L.R. Age 29 - Sydney

I consider myself one of the lucky ones when it comes to vulvodyina, which I would describe as one of the most all-consuming, debilitating and depressing conditions a woman could experience. I’m lucky because my symptoms only lasted approximately one year. However, after that year I did experience another crippling associated condition, which could be described as Painful Bladder Syndrome.

My vulvodyina symptoms started when I was 28 years old. After an operation to remove my appendix, I suffered many bouts of thrush. I remember experiencing a few bouts of thrush in my early twenties but these thrush infections were quite aggressive and frequent. My boyfriend at the time thought I had some STI and wasn’t supportive, so when I started to experience an ongoing burning sensation in my vulva region it added more pressure to the relationship.

I just assumed that the burning sensation was due to the series of thrush infections after my operation however; one day I started experiencing a sharp stabbing pain at the initial stages of intercourse with my boyfriend. I was confused, distressed and kept thinking that I had some bizarre sexually transmitted disease even though time and time again my pathology was clear. I felt alone, depressed and withdrawn.

In the end, my relationship suffered and I fell into a deep depression. I stopped menstruating and I was barely coping on a daily basis. I kept thinking I was being punished, like I was the only person experiencing this. I went from doctor to doctor, none of whom really new what was happening. I turned to alcohol to get away from it all and being single after my break up, I didn’t think I could meet anyone because they might think, like my ex-boyfriend that I was dirty and diseased.

I found Marek through this website and working with him honestly saved my life. He was the only person who understood what I was going through and had a clear pathway for improvement and even a cure. I was thrilled! I remember walking out of his office crying with joy that someone out there could help me. I started the biofeedback treatment five months after my symptoms started and noticed an improvement within three weeks. I didn’t realise how much tension I was holding within my pelvic floor region and it was a challenge to remember to always relax my muscles in day-to-day life. After a couple of months I started with the dilators and noticed a considerable improvement.

To better improve my situation I quit my job and had the opportunity to take a sabbatical at my parents house in Adelaide as I was working in a highly stressful environment, which was only fuelling the stress and anxiety of the condition. I took two months off and practiced my biofeedback exercises twice a day and worked with my dilators once a day. The improvement was considerable; I would say almost 100% normal.

Upon returning to Sydney I slipped into a similar career role, highly stressful and fast paced and had a couple of months of living like a normal female with pain free sex and no burning sensation. Then in early 2009 I experienced a severe urinary tract infection, with symptoms that never seemed to clear up. I experienced an increase in urination urgency and frequency and would have to void two to three times a night. I also experienced a constant discomfort in the bladder region and would constantly have to take strong pain medication for relief. This was a devastating blow after what I’d just been through with the vulvodyina. Once again I felt isolated and deeply depressed. Again no doctor could diagnose the condition, as my pathology was clear with no sign of infection. I had a cystoscopy, which showed a perfectly healthy bladder, but still I was experiencing pain on a daily basis.

Again this affected my relationship with my new boyfriend and I became distant and extremely moody. Even though he was extremely supportive, I couldn’t cope with intimacy as I associated it with pain and discomfort and in the end I completely self sabotaged the relationship. I just wanted to be alone. I couldn’t believe I was going through another crippling condition with no sign of an explanation, why or how?

On a whim, I called Marek and he determined that this was definitely related to my previous vulvodyina condition and I began two weeks worth of intense muscle therapy to loosen the rigidity of the muscles around the base of my bladder and urethra, which was causing the pain and discomfort. I noticed improvement after the treatment however I wasn’t fully back to normal like prior to the UTI.

Relief came when my sexual health therapist and my gynaecologist considered the fact that I still wasn’t menstruating. The bladder, urethra and vulva rely on oestrogen, which essentially thickens the lining of these parts. A simple hormone level test indicated that I had low levels of oestrogen, which could be contributing to the discomfort as the lining of my bladder and urethra were thought to be thinning. I was prescribed the contraceptive pill and noticed an almost 100% improvement after two weeks. I felt like the combination of Marek’s work and the contraceptive pill definitely contributed to my vast improvement.

I wouldn’t say I am 100% cured because what I’ve been through is constantly in the back of my mind. I still feel depressed at times and I do suffer from a general anxiety disorder due to the last two years of dealing with these conditions. They’ve affected my career, my relationships with men and also how I feel about myself and I will probably still be dealing with the affects of these conditions for quite some time. However, I do feel like the worst of it is over.

Like I said, I consider myself lucky, as I’ve only had to deal with these conditions for a couple of years. Many women suffer their whole lives. One positive outcome for me is that I’ve realised that I want to change the direction of my life and career and help other women with these conditions because at times I felt like they had truly beaten me.

All I can say is that with the help of Marek, my gynaecologist, my sexual health therapist and my amazing family, I now feel like I’m on the way to leading a happy and normal life and to help with my healing, I am now taking steps to set up a support group for other women who are suffering.

Vulvodyina and Painful Bladder Syndrome affect every aspect of your life. They are all-consuming and debilitating conditions, if you are suffering and need to talk to someone please contact me through the vulvodyina website.

C.J. Age 22 - Perth

It was about six years ago when I started to suffer from Urinary Tract Infection (UTI). I was admitted to the emergency department and prescribed antibiotics. I was told the pain would clear in 1-3 days. But the pain never cleared. I would spend up to six hours a night on the toilet in too much pain to stand. I become very dizzy from the pain. I had all the symptoms of the UTI but each time my urine samples came back negative. Countless GP’s decided that I had an infection that was not there and I was kept on antibiotics for 12 months. Every few nights the pain would be so severe my mum would take me back to the emergency department. Still nothing would come up on the tests. Again I would get even stronger antibiotics through drip and prescriptions for tramadol, a painkiller. The tramadol made my stomach hurt and I could not keep any food down but the nausea was better than the intense burning I would feel otherwise. In the first year of these UTI symptoms my partner and I could no longer engage in sexual intercourse. It started out with burning on the outside then gradually with any penetration, even tampons, would send sharp pains through my bladder and into my lower back. I became very distressed and told my GP’s but they said that obviously my boyfriend was too rough. They also questioned abuse but I told them that we were having painless intercourse before this began and that he would never want to do anything to hurt me, so I knew that there had to be more to this.

After arguing that I was not imagining the pain my GP referred me to a Urologist to see what they could do to help me. Again no bacteria was found in the urine samples and the Dr put it down to ‘chronic ureteristis with no visible infection’ but I had no idea if this was even a real diagnosis but I took the extended 12 months antibiotics. This Dr did an operation to scrape my urethra, which was meant to take out any bacteria that could be hiding. Everything was meant to go back to normal after the recovery period but this only made the everyday pain worse than before. He did this again, and it again made the pain worse. I tried to tell him how depressed this was making me but he also decided that if he couldn’t fix the problem then it was in my head, so I left.

I had taken absence from my apprenticeship for six months because I could no longer stand straight. I only left the house for Drs appointments and I always had ice packs between my legs. My sisters and mum would have to keep changing them for me through the night and when I had bad flare-ups I needed help to get to the toilet, to the shower and to bed.

I saw another urologist and he performed a cystoscopy, placed a camera inside my bladder, to see what was going on, which I now had done twice. He found that my bladder had severe scar tissue damage and my bladder turned a greyish, black colour when a healthy bladder should be pink with veins. He later did a urethral diathermy, to burn off the top layers of my bladder and any scar tissue. I had a catheter for a few days but when taken out the pain was still present. I had put all my hopes into this treatment so that when that failed I became very depressed. I lost my appetite causing me to rapidly lose 20kgs. I was lethargic and sick all the time.

My mum would say to me that all this happened because I let my partner touch me. This contributed a lot to my later depression. I tried telling the Drs how depressed I was but my GP told me it was not a normal disease. At King Edward’s hospital they referred me to a psychologist and urologist but I found that not to be helpful.

I was then referred to the sexual health clinic at the women’s hospital where I spoke with gynaecologists, psychiatrists and physiotherapists. I went under more tests with the gynaecologist and when lightly touched with a cotton tip on my vulvar I was scoring pain at 8 to 10. That was when I was diagnosed with vulvar vestibulitis, chronic pain of the vulva and bladder and pelvic muscle spasms. I tried countless numbers of treatments from vaginal pessaries to laser physiotherapy and put on high doses of Amitriptyline and Gabapentin to help ease the nerve endings sending pain. I have now been with this hospital for 3 years and progress was slow.

The Drs at the women’s hospital finally gave me a number to Marek Jantos who came to Perth once a month. I have now been seeing Mr Jantos for 8 months. Although I already knew that my pelvic floor muscles (PFM) were tense, he was able to give me a reading of exactly what they were doing and showed me what they should be doing. We could see that I was using 80 percent of my strength at times when they should be relaxed. We have been trying to train my PFM to relax but I was having difficulty with this as it now feels natural for me to tense. I have been using the biofeedback at home every second night to learn to use my PFM properly and dilators every other night to bare down on my muscles. My partner usually helps me with some exercises and is always telling me to take deeper more relaxing breaths as I seem to breath short and shallow when doing this and that does not help me to relax.

I went to Adelaide for some of the treatment done and since that time I have seen some huge improvement. My partner continues to help with the dilator stretches and then we managed to achieve penetration. We have to do ‘warm ups’ before, which is a bit of a mood kill, but without it I would get scared and my muscles would brace expecting pain. Frictioning was still uncomfortable but nowhere near as painful as before. Only once in those 6 months did I have a bladder flare up where I needed to go back to hospital but I am not having bladder spasms multiple times a day, which I was having in the past. I can now do some activities that I had to give up before and my boyfriend and I became very optimistic about the future thanks to Marek Jantos.

I have had 6 years of pain and been told I am crazy, that its STD’s in front of my mum (negative) and started to think it was my boyfriends fault. I am so glad I didn’t give up as I planned because I was finally with the right treatment for a real condition. It can be very degrading and embarrassing being poked and prodded by doctors but Mr Jantos is very comforting. I knew that with him I would soon be completely pain free. As of the last 2 months I’m pleased to say that my boyfriend and I are now able to enjoy completely pain free intercourse. My boyfriend of 7 supporting years and I cannot thank Marek Jantos enough.

M.K. Age 30 - Sydney

For at least the last eleven years I have had problems "down there". At my last visit to my GP, I sat in tears explaining that I thought I had a bladder infection, a yeast infection, pain during and after intercourse and chronic constipation. The problems seemed overwhelming and when nothing was found wrong after the swab and urine tests - I was close to giving up. My GP (who I have seen since childhood) told me again that he thought my problem was psychological. Recognising that I was close to depression again (which I battled for many years while finishing my law degree and dealing with this condition) I decided to make one last effort to treat these issues. I also knew that my relationship with my boyfriend of over a year would suffer with me in this state. So I made an appointment to see Dr Richard Reid.

Dr Reid diagnosed me with vulvodynia. He diagnosed a chronic yeast infection (which is what has triggered this condition) and I started a long term course of Nizoral. I immediately responded to the Nizoral. Though not completely being able to get rid of it, I am continuing to take it. And he referred me to Marek Jantos.

I first saw Marek in Sydney where I was taught how to do u-control exercises. However, within a few weeks of the exercises I had developed a new pain - clitoral pain - which Marek knew immediately was related to intestitial cystitis. I altered the way I did the exercises and after spending two days working with Marek I think the progress I have made towards eliminating my bladder problems and treating the vulvodynia are amazing. I am now working towards eliminating the chronic thrush and hope that as a result of my muscles relaxing, the way my bowel functions will change as well.

Marek's patience and knowledge in this area is nothing short of phenomenal. I honestly feel very lucky to be in the care of such knowledgable experts - and now have hope that I had lost many years ago.

R.R. Age 24 - Sydney

My partner and I had been together for approx 2 years before I began experiencing pain during sex. We started out like any normal couple however after a couple of years I started to feel tightness whenever we would have intercourse. To begin with it was just uncomfortable however over the following 2 years the pain slowly increased until I was unable to endure penetration at all.

I saw 3 GP’s before I was referred to a Gynecologist. The first suggested it was simply a “mismatch in sizes” which I knew wasn’t right because to begin with I didn’t have any pain. After every doctor’s visit I got more frustrated and upset. I wanted an answer as to why I was in pain and I wanted to be taken seriously. Eventually I saw a Gynecologist and he immediately referred me to Dr Richard Reid who advised I would need to have my Bartholins Glands removed as this was one of the sources of my pain and once this was done I would be able to start treatment with Marek Jantos. I had the surgery and recovered quickly however sex was still extremely painful. Two months after my surgery I started working with Marek. To begin with I was skeptical of how effective the treatment would be. I started using the biofeedback which strengthened my muscles and then began working with the dilators. I started with a size 4 and have now progressed to a 6.

Along the way there have been many setbacks. I thought that gradually sex would become less painful each time I tried however it wasn’t like that. Sometimes it hurt quite a lot and other times it wasn’t so bad. There were times when I would get so upset that I couldn’t watch a love scene on TV without wanting to cry because all I wanted was pain-free sex like everyone else. I tried talking to my close friends about it and they tried to understand however it was hard for them to relate to such a unique problem.

Throughout the treatment the most important thing to remember is you WILL improve. I have gone from intercourse being a 9/10 on a pain scale to generally being pain-free in 6 months. You just need to stick with the exercises and try to stay focused as you will get results it just takes time and patience.

Through it all my partner was incredible. I was racked with guilt about not being able to have a “normal” sex life and he never pressured me. He was constantly reassuring me that we were in this together and it was OUR problem, not mine alone. He understood that this was not something I could control. Below are his thoughts from the male point of view.

In the beginning all was normal with our sex life but after a couple of years we both started to notice the discomfort with intercourse. We began to think that it may have been an intimacy issue, and spent a long time working on this. Over the next 2 years, what was originally discomfort progressed to actual physical pain, so intense that we could no longer have intercourse, or if we tried, it would end in tears. After many visits to different doctors we were left feeling helpless, not getting the answers we knew were out there. Finally we were referred to a gynaecologist, who then referred us to Dr Richard Reid. Dr Reid did an examination and gave us a name for what was going on. Vulvodynia. We were so relieved to find out there was an actual medical condition for what was going on, but also apprehensive about the pending operation and months of exercises and biofeedback. And also worried that the operation might not make a difference.

The biofeedback was the next stage, and over the first month we got into the routine of it all and began noticing positive changes. Over the time we have been visiting Marek we would always leave our appointments feeling positive about the progress we were making. We are now back to having basically pain free sex.

It was so difficult for me to see how upset it was making my partner, she felt so guilty, I knew it wasn’t her fault that this was happening, but all the while she still felt guilty, I just kept reassuring her that we would have a positive outcome. Telling her how much I loved her and why, and letting her know that it was ok that we weren’t having sex because I understood that it was painful for her. And letting her know that she had no reason to feel bad about it. I truly believe that going through this experience has only made our relationship stronger.

H M 44 - Melbourne

I thought I would let you know about some progress I have made with my vulvodynia in case it is helpful to any of your other patients.

When my vulvar symptoms started years ago I was advised to stop using soap and start using a soap substitute and I choose Cetaphil. While looking up allergies on the internet, I happened to read about many people being allergic to Sodium Lauryl Sulphate and Sodium Laureth Sulphate. I checked and Cetaphil contains Sodium Lauryl Sulphate. So I changed to Hamilton Wash which contains a different detergent and no SLS. I had been thinking for a while that is was impossible to keep all the Cetaphil away from my vulvar area when rinsing. It is easy to keep hair shampoo away from the vulvar area when washing hair, but not possible to avoid it when washing the rest of my body. Since changing to the non-SLS skin wash I have noticed a big drop in my irritation levels! I still have tight muscles but the skin is a lot less irritated.

I have also recently been diagnosed with a slightly overactive thyroid. The endocrinologist wants me to use PTU but I am wondering about having another child and am reluctant to take anything. I have read about L-carnitine on the internet but am not sure about that either. But I do have some of the symptoms of hyperthyroidism eg agitation, nervousness, irritability and insomnia so I will interested to see what happens to my vulvar tension when I do eventually start taking medication to treat my thyroid.

HM 44 - Melbourne - Return to Top

J R - Melbourne

It was about 12 months ago when I began to experience symptoms of Vulvodynia. These past months have been very challenging, however I am 80 % better now thanks to Mr Marek Jantos. I cannot imagine what state of mind I would be in without his help.

My pain became evident in January 2007. I was in the first few months of a relationship with my partner. I was a virgin, so we would engage in other sexual activity for a few months before we had intercourse. I would feel some burning during sexual activity, but still enjoyed it and put the burning down to my body getting used to it. Gradually, I began experiencing daily vulval burning, as well as itching and red raw irritation. The pain became constant around the same time my partner and I eventually had intercourse for the first time. It wouldn't alleviate nor would it subside with any treatment I tried. Intercourse was painful and again I put it down to my body getting used to it.

So I started my battle with this condition. I have been to countless doctors appointments, including a very unprofessional gynaecologist who would later have a huge impact on my psychological well being. I felt like a freak, that I was wasting the doctor's time, especially when they would fully examine me and tell me there was nothing visibly wrong with me. I did every test imaginable and they ruled out any type of infection I could have. No matter how many tests and treatments I did, the pain was still there and it certainly wasn't something I was imagining.

When I saw my gynaecologist, she mentioned the condition Vulvodynia. I asked her for more information on this unknown and rare condition. She told me to look it up on the internet. This caused me a great deal of emotional pain. At this stage, I still wasn't sure if that's what I had as I was still trying to rule out any infections that may be present. You can imagine what I read and how I felt when all I could see was that this condition didn't have a simple cure and that it was something I would have to learn to deal with. I couldn't believe what I was reading and because of the state I was in, I believed every little detail. I became addicted to finding out as much as I could. I was convinced that I was handed a life long sentence of pain and suffering. To add to this, she examined me as if she were examining a woman who had already given natural birth to 5 children. I was in tears the whole time she poked and prodded and this was before I was sexually active!

I continued to see my local doctor who then mentioned a vulval specialist by the name of Dr Ross Pagano. Finally after months of what felt like torture, I thought this may help me. I made an appointment, but could only get in after a 6 month wait. I also tried another vulval specialist who refused to see me because I didn't have private health insurance. Her receptionist told me this was to cover them in case they had to operate on me! Once again, another brick wall and I fell into a deeper depression.

My life was turned upside down. I stopped eating, sleeping and fell into a bout of depression. I couldn't concentrate and I began feeling very anxious and edgy. I was constantly thinking about it and looking back I have no idea how I went to work and functioned day after day during that time. I couldn't stop crying (even at work and in public) and it worried my parents and partner. After the initial ‘what's happening to me' stage, I began to feel completely inadequate and guilty. I was worried I would never be able to have a sex life and that I couldn't please my partner. Feeling totally insecure, I started thinking of the future and began to worry that I may not be able to lead a normal fulfilling life. It was very hard for me to pretend to be happy during that time, my partner and I would visit friends, go out to dinner. I struggled to do ‘normal' things. No matter what, my thoughts were plagued with Vulvodynia. It was so frustrating that no one out there could tell me when it would all go away or at least let it leave me in peace for even a day!

Then a wave of determination hit me. I decided I had to find the solution myself. As a last resort, I looked up www.vulvodynia.com.au for pure curiosity. Sure enough, there was a dedicated website with accurate and up to date information. I almost cried in relief. I read it all and it made perfect sense. Even more importantly, I could relate to it. I was so happy to hear I wasn't the only one and that there was help out there! I read case study after case study and these women sounded exactly like me. Mr Jantos' details were on the website. I called his office right away and got through to him on the spot. He agreed to see me in 2 weeks! You can't imagine how happy I was to hear that. He briefed me on what to expect and I waited eagerly for our appointment.

From day one, Mr Jantos was brilliant. I was a bit worried prior to our first appointment, but he immediately made me feel comfortable. He measured my pelvic floor activity and showed me how tight my muscles were down there. He told me why I was in pain and how we could treat it. He told me that the daily vulval burning would subside and that I could eventually resume normal sexual function. He showed me how to use the biofeedback machine to relax and desensitise these muscles and we eventually progressed to dilator exercises. I have progressed to a size 5 dilator and continue to do my exercises. I learned so much and how I could start to control my body. My muscles are still hypersensitive in some areas, mostly deeper muscles that we are still trying to correct. I have also been suffering with haemorrhoids for as long as I can remember, so we have discussed techniques to relax all the muscles in this area also. I'm still working hard to get it all back to normal! Just recently I had a flare up so I called Marek for some guidance and got through to him then and there. He was so supportive over the phone and answered all my questions which gave me the confidence to get through it. Having this contact with Marek outside of appointments when I'm feeling down helps me a lot as we talk through any negativity I may be feeling and I feel a lot calmer. I have called Marek on more than one occasion to ask random questions about VV and each time he has been patient, helpful and comforting (which helps when you are in pain and no one else seems to understand!)

I am in a much better state of mind these days and my pain has almost diminished. The burning that I was experiencing has subsided and my flare ups are very rare (they usually happen when I have had a ‘break' from my exercises or have been under emotional stress which can happen when you're female!) I can finally enjoy sex! Sex upon initial penetration can be painful as well as thrusting (especially if I am not well lubricated), but I am so much better and I can finally enjoy what other people take for granted. Earlier on, sex was close to unbearable and I would get a horrible burning feeling afterwards. This has improved immensely. My partner has been and continues to be endlessly supportive and for this I am eternally grateful as my Vulvodynia began early on in our relationship – if it was anyone else, they would have walked out! We are now stronger than ever and even though I still get plagued with negative thoughts at times, I maintain my positive outlook.

To any women out there who have recently been diagnosed or have self diagnosed themselves, please know that you CAN get better! I never thought I would be able to get through this but here I am telling you that no matter what, things can get better and you can manage this. I know that I am not completely cured, however I am a million times better than what I was a few months ago. I was feeling very low back in the early stages and he gave me real hope with results.

I would not have been able to cope without the guidance and support from my partner and my parents. Mr Jantos saved my sanity and I cannot thank him enough for his expertise, kindness, understanding and support.

J R - Melbourne - Return to Top

T F - Austria

After our lucky meeting in Melbourne, I am completely amazed that my health has so quickly improved. I started off well with the exercises,
but then began to feel unsure about my progression, and was not regularly practicing. About 4 weeks ago I re-read a few case studies on your web-page. It helped me focus again, and the result since then is remarkable!

My husband and I had intercourse for the first time since our marriage (just over 3 years!)

My pain is still present - but much more subtly in a few places, towards the stretching region, it is completely fine now.
I am hoping it will continue to progress.

I have attached my story - I really hope it will help others.

My husband and I enjoyed sex for a few a months before I felt a small region of painful hypersensitivy at the opening of my vagina. This small region seemed to increase with time, and with each new effort to have sex, became worse. I received treatment for thrush from 2 different gynaecologists, and was then reassured that my vaginal health was completely normal, and one suggested that perhaps I was tensing and not relaxing enough during intercourse with my partner. I was reluctant to seek further advice from other consultants, as it was clear from their results that my physical symptoms were unverified. This held negative dramatic consequences for me and my partner. Eventually I was unable to consider intercourse, because the pain was so extreme, and created a depressive spiral, and a cycle of repression towards the problem. It was amost 1 ½ years before it was desperation that drove me to find a solution to my terrible state of health.

I found consultants with a range of opinions, between Australia and Europe. The European consultants tended to emphasize the psychosomatic condition, without offering referral to practitioners (such as physiotherapists/dermatologists) for relief from the physical symptoms. Psychoanalysis/psychotherapy (long term) was advised on 5 accounts.

The Australian consultants emphasized wholistic health, some discrediting the usefulness of psychotherapies, and others respecting the balance of physical remedies within a psychological context. I agreed to a trial with allegron, beginning the dosage with 10mg. We increased the dosages over a period of 5 months, but as there was no physical change in my symptoms we stopped the medication. I was receiving weekly psychotherapy during this period, as I needed support from the depression and anxieties which were a result of this chronic illness. I observed that whilst taking the allegron I had strong suicide ideation/depression whenever the dosage was altered. (I have since been told that studies have revealed such symptoms for some clients) My mood state improved significantly when I was no longer on the medication.

I began finally to consider the biofeedback, pelvic floor muscle option. I was always in (irregular) contact with a therapist, as finding a path toward healing with so many discrepancies was proving challenging. I found Marek Jantos on the internet, and was extremely fortunate to have consultations with him right away. After the initial testing, it was very clear that I was suffering from vulvodynia, and that my muscles were in a constant state of tension. It had been 3 years that I had experienced symptoms classified as secondary vulvodynia. As a result my anal sphincter was also very tightly stretched and my stomach was often in tension. I felt the first sign of physical relief from the dilator exercises and was immediately able to comfortably use tampons.

I am continuing these exercises, and have seen significant improvement. (It is now four months, since I met Marek, and we have had normal intercourse.) I cannot underestimate the value of therapy within the context of this problem, because the symptomology creates a distrust of oneself and can potentially open up much psychological unrest. But it is disastrous advice to be involved only in forms of psychotherapy without the physical therapies. Unfortunately, some practitioners discredit alternative forms of therapies, different to their own, which makes it extremely confusing for the patient. I was led to believe that in effect I had brought this nervous disorder upon myself, and that by making analytic pathways through my mind, the symptoms could be eventually resolved. Triggers towards certain problems can certainly be exacerbated by witheld tension and repression and I have no doubt that psychotherapy can be very hard work, and very rewarding, and can help resolve such tensions. But it is extremely clear to me now, that without actively changing the physicality of my muscle hypertension, I would possibly never find a path for healing, in both my mind and body. Thus, I am extremely indebted to Marek Jantos.

T F - Austria - Return to Top

Case Study - November 2006

I am 30 years old and have been married for 3 years. My partner and I have been together since we were 21. Until recently, I have not been able to have sexual intercourse with my husband without experiencing a great deal of pain. Sexual Intercourse was so painful that we rarely had sex. I have been experiencing this pain since I can remember.

When I was 15, I had my first period. I had tried using tampons countless amount of times. It was far too painful so I haven't been able to use them. Since my husband and I met 10 years ago, we have been trying to have sex, but unable to do so. I consider myself extremely fortunate to be with someone so understand and patient. I have seen several doctors and they all came to the same conclusion, that my problem was not physical, but psychological. I had seen a psychologist, but no progress was made. I gave up hope. I continued to try to have sex and try to push through the pain, but it was not possible.

In 2004, I visited my G.P. to treat my migraines. She looked at my medical history and asked me how the progress was going. I told her that no progress was being made. My G.P. then referred me to another gynaecologist at St. Vincent's Hospital. I visited this gynaecologist and she gave me another pap smear and took a biopsy. All of the test results came up clear. She said that my symptoms sound like vulvadinia. She then suggested that I visit another gynaecologist at the Royal Womens who is knowledgeable in this area.

I went to the Royal Womens and visited Dr. Ross Pagano. Before sending me to Marek Jantos, he wanted to be sure that we had exhausted every other options. Dr. Pagano then put me on a course of tablets that were to help me with the thrush that I had. He also put me on another course of tablets that were designed to decrease the sensitivity in the vaginal area.

After 9 months of trying these tables, he referred me to Marek. I was very sceptical and didn't believe anything would work. I have been very depressed about the situation for many years and despite all of the doctors I have visited and all of the medication I had taken, it seemed that there was no solution. My first visit with Marek Jantos was interesting. He explained vulvadinia and his research. I began with the bio feedback. After three months, I had my second appointment. I felt very comfortable with Marek Jantos as he was able to explain my problems and it made sense. I looked on his website and read through all of the case studies and was thrilled to know that I wasn't the "freak" that I thought I was. It was also comforting for my husband to read the case studies as he could also see that my problems did have a solution.

After my third appointment, I began using the dilators. The size of the dilators then increased. I felt less and less pain. I was so happy that I could actually now insert a dilator. I could also finally use tampons!

Under Mr Jantos's recommendation, we began having sexual intercourse. It was painful on entry, but nothing compared to what I had previously experience. The pain would only last 5 seconds and then I was able to finally enjoy sex with my husband. Every night for 2 weeks, we had sexual intercourse. Before my period, sexual intercourse became relatively painful, however, still nothing compared to the pain I experienced prior to visiting Mr Jantos. I am now still using the dilators and the biofeedback to help to further relax the muscles.

During one of my consultations, I also discussed my phobia of belly buttons. When I was 8 years of age, I fell off my bicycle and fractured my jaw. Soon after, I developed this phobia of belly buttons which has worsened over time. I cannot touch my own belly button. Even saying the word makes me cringe. When I watch television and there is an show or advertisement that shows a belly button, I have to look away. My anxiety about my belly button is so bad, that I am put off ever having children. I fear that when I am pregnant, I will have to see my belly button. I am also scared about my reaction to viewing my child's belly button. I have started to do some stretches with the area around the belly button to hopefully reduce the hypersensitivity. The stretches have helped me relax that area, but my phobia still continues.

R.J. Age 30 - Melbourne - Return to Top

Case Study - November 2006

I can’t recall exactly when the pain began but I know I was not yet a teenager (maybe I was 10 or 11). I would tell my mother that my vagina hurt and she would try to reassure me it would pass and was probably just part of growing.

I was also encountering back pain, which I attributed to an incident when I jumped off a high diving board and landed on my back into the water. I went to a chiropractor and a physiotherapist and discussed my back pain with my doctor but I was reluctant to have my vaginal pain investigated. I had an x-ray of my spine, which didn’t show anything significant other than a straightening of the spine probably as a result of the tension of my muscles responding to the pain.

I became sexually active at 13 and didn’t encounter any pain during sex but still had almost daily episodes of vaginal pain that didn’t seem to have any pattern to my cycle or my sexual episodes. Over time the pain began to come more frequently and was more severe. I had never experienced pain during urination but this developed to the point where I would avoid urinating until the last possible moment because I was frightened of the pain I knew I’d encounter. The pain is a burning, stabbing, stinging pain.
At 15 I developed cystitis regularly and thrush. After one very heavy case of thrush my pain changed. Any touch became unbearable, even wearing underwear and wearing trousers or jeans. I was in a loving relationship with a fantastically understanding guy but I could no longer experience intimacy without having pain during and especially afterwards.

I gave up sports and was reluctant to go out just in case the extreme pain came. I was emotionally exhausted and started to need to take days off school which frustrated me as my education is important to me. Every day I suffered with the pain intensity sometimes being a 9 or 10 and the days of only a 3 or 4 were almost a relief. I am never pain free. I had a part time after school job for only three evenings a week but could not keep it as I hated needing time off because of the pain.

I visited my doctor with my mother as I was finally fed up with the pain and decided any examination or treatment would be bearable if the pain could be taken away. My doctor referred me to a gynaecologist/urologist and I was placed on a low dosage anti-biotic to keep the cystitis at bay. The gynaecologist examined me, took swabs and sent me for blood tests and an ultra-sound. Nothing abnormal showed up and she referred me to a pain specialist.

He prescribed norpress and neurontin increasing the dosages at each visit. Later I was also prescribed Tramadol and Panadol in conjunction with the other medicines. I was eventually taking over 120 tablets a week and began to detest them. I became numb emotionally and I was still suffering from the pain. A MRI also didn’t show anything to explain my pain and the next step suggested was exploratory surgery. I tried TENS but it made no difference whatsoever.

I became despondent when I caught the flu and the virus caused me to feel the pain even more acutely. I couldn’t keep the pills down and stopped taking them, intending to get back onto them once I recovered from the flu but dreading returning to them at the same time.

My mother began researching even more furiously for alternative courses of action because we both believed surgery was not yet an option and this brought us to Marek.

We booked a flight as quickly as we were able and Marek saw us as often as he was able for the week we were there. Marek showed us with the biofeedback device attached to the computer how tense my muscles were. The tension level was off the scale and it was a relief to finally see a the cause of the pain I was encountering instead of all the tests suggesting everything appeared normal. He explained the relaxation methods, which I was able to do to bring the tension measurement down to a more acceptable level for short bursts and the device was easy to understand and use.

Because we were having a crash course in the biofeedback treatment by the last day we decided to merely discuss the progress and plan for the weeks ahead rather than have any more treatment as I was hurting.
I felt uncomfortable having my mother assist me with my treatment back at home so I explained it all to my boyfriend. He and I have got into a really good rhythm of my “exercises” and my family is respecting our privacy.

With a recent weekend away I was unable to do my exercises and with school exams the tension has increased again. I was back to a size 1 dilator but with the knowledge Marek has given me I am back on the road to recovery (size 4). I am now ready to ask Marek for the next size dilators.
I am only at the very, very early stages of my treatment but I can understand now what my body is doing. It doesn’t matter why I have this condition because I know it’s not a growth that can be removed or an illness that has a “cure” as such. What I need is the knowledge and tools to reduce and relieve the pain and I am feeling hopeful that one day my pain will be a thing of the past.

T.R. Age 16 - New Zealand - Return to Top

Case Study - May 2006

My battle with primary vulvodynia began at the age of 10. Until last year (at the age of 33 when I met Marek), this condition has been a nameless, unacknowledged, humiliating thorn in my side. It has caused me profound frustration and millions of silent tears. I’ve hidden it from my closest friends and have learnt to tell ‘little white lies’ to desperately cover my tracks when necessary to keep it to myself.

I’ve fought with medical opinion (expressed, implied or completely ignorant) that my problem is non existent because my vulva looks healthy enough. In the last 5 or so years I completely gave up looking for help because I always came away feeling like it must be ‘all in my head’ even though I’ve always known deep down it wasn’t. I try to bury my thoughts of frustration and the ‘why me’s’ as it is counterproductive. I find in doing this though that I never really learnt to cope with it either. I have only just begun to speak about this problem, and find having someone who is willing to listen, a huge help.

Pre-treatment:
I live with constant vulval discomfort and/or pain, itching/burning and a ‘tight’ feeling at the vaginal entrance (it feels like I’m sitting on a narrow bike seat all the time.) I cannot wear pants at all, cannot straddle a bike, as these things are so painful. The best way I can describe it is like wearing a pair of shoes 2 sizes too small, you just can’t think of anything apart from taking them off, so it is for me with pants and bike riding. Obviously, not being able to wear pants affects my life in many ways –can’t follow fashion, what jobs I can go for (if pants are the uniform) going to the gym (I don’t go, I don’t want to get ‘caught out’ – what could I say?) It’s hard to hike, ice skate etc in a skirt. In winter it’s hard to keep my legs warm. If I wear tights I have to wear them with the crotch part half way down my legs, not a good feeling either! Winter time always gets me down.

I find the vulval pain (mainly stinging/burning) gets worse just before and during a period. Until reading other case studies of vulvodynia I thought this was normal for everyone! The first tampon I used was at age 15. It was such a memorable experience for many reasons. Firstly, I could barely get it in, no matter how much lubricant I used. I tried a hot bath, relaxing etc but eventually I just used brute force. Mum said it would get easier, and I was only having trouble because it was the first time. (It never did.) That first tampon then would not come out and I ended up at the GP’s after hours, and he cut my hymen to get it out. He didn’t seem to think it was a big deal.

I worried all through my teens about how I would ever have sexual relations, my external vulval area was always painful – it waxed and waned but was never good, I had bad days and worse days! It remained very painful to use tampons and GP’s suggested perineal massage used for preparation for childbirth. The idea is to stretch with two fingers until a mild stinging is felt.
I couldn’t even insert two fingers without great difficulty and pain, I wondered then (and still do) how any woman could give birth vaginally and not be a mess afterwards.

I had gynaecological surgery at age 17 where my labial tissue was reduced (almost entirely removed as it turned out). The idea was the less labia the less irritation. Apparently many women have this operation and gain much benefit. I didn’t. I have blamed my pain largely on this procedure in the past but now believe that as I’ve had pain since the age of 10, it cant be entirely to blame (and all but one doctor I’ve seen agree.) It just blurs the borders and makes it harder for me to be properly diagnosed now.

I met my husband at age 20. I was still a virgin, and still hoping that somehow once the ‘passion’ took over it would all be okay. It was hard to have him fall in love with me and then have to tell him that our love life would be difficult. I feared rejection and felt like such a failure as a woman (I still do). Our sex life has always been hampered by my pain and penetration has always been slow, painful, but at least eventually I can usually ‘get beyond’ the pain and enjoy it somewhat. Afterwards I always have the feeling in my vagina of burning, like someone has scrubbed my insides with a scrubbing brush. This feeling lasts up to an hour.

Initially when the problem started at age 10, I blamed the vulval pain/discomfort on the particular pair of pants I had at that time, I thought they must be getting too small even though they looked okay fit-wise. I then found it painful to straddle those inflatable ‘pool pony’ toys – and I blamed the central seam in the toy, even though to touch with my hand it didn’t seem sharp, but to my vulval area it seemed very much so. I remember these events vividly, they really were the turning point into vulvodynia and started at the same time puberty did.

Over about the next 2 years the problem deteriorated to the point it is at today – no pants are comfortable, not even fleecy track pants, and I have a constant awareness/discomfort - even when wearing no clothes at all. I do avoid sex as I find it exhausting emotionally and physically to get beyond the pain barrier. I am sick of trying to guess what is causing my pain but find it still plagues my mind daily. It is hard to forget about something that is one of the most defining things in your life.

I am extremely prone to thrush, I do everything they say to avoid it. I only wear cotton underwear, never use soap in the bath or bubble bath, change my underwear 2-3 times a day on hot days etc. I use canesten cream but find although it helps somewhat it never seems to take the problem away entirely (although I wonder how much I confuse thrush with vulvodynia as a separate entity anyway.)

I have two young children, born via caesarean section. I took out private cover just to make sure I could definitely have caesareans and not have to have a vaginal birth. It wasn’t the pain of a ‘natural birth’ that scared me, but I just do not believe that I could do it without massive tearing causing me more life long pain. I have enough of that already. I have a recurring dream at night that I’m giving birth vaginally and that it goes well, so obviously there is part of me that wished I could have. At the time I was pregnant I had overwhelming fears of going in to labour and not getting to hospital in time. I fear vaginal birth more than death.

I worry that my daughter that she will end up with vulvodynia too. I really hope there will be a huge increase in the understanding of this condition and its treatment so that if she ever is faced with it there will be something more that can be done so she doesn’t go through what I have been through.

Treatment, first five months:
I began to see Marek about five months ago now and have begun biofeedback and dilators. Initially I felt the problem got worse for about the first month but I was determined to stick with it. Now I am much improved, the feeling of tightness that I was constantly aware of in my daily life is much reduced (I’ve finally got off that bike seat I felt I was sitting on). Now I am aware how much I subconsciously brace the muscles of the pelvic floor, especially when I’m feeling rushed or stressed. This awareness has taught me to stop and relax the muscles, stopping what was a vicious cycle.

I am using tampons with ease now (I still cant believe its so easy) and penetration is much improved. I no longer have the ‘scrubbing brush’ feeling in my vagina after sex. I am still unable to wear pants and find if I do I start to brace. I still have some external irritation but it is becoming more specific to certain areas and so I feel I am beginning to separate what was the result of the surgery as opposed to what was primary vulvodynia – I have never been able to separate the two before.

Emotionally I am much better, I couldn’t have written this case history at all a year ago as I felt no one understood or wanted to listen. I was so ashamed. Outwardly I’ve always been very smiley, honest ‘open book’ type of person in all aspects of my life apart from vulvodynia - I know people who think my life is fabulous from where they’re looking in from the outside (they tell me so) I think “if you only knew…”. They’ve had no idea about the vulvodynia and in some ways I feel like such a phoney (although I don’t know what they think I’m doing in all those skirts!!) The vulvodynia aspect has always remained my hidden shame. Now that I am seeing Marek and have read other case studies I finally feel I am not alone and that there are people seeking to understand and treat this condition. I am grateful to finally unburden myself and hope what I’ve written will help other women in some way.

K.G. Age 34 - Adelaide - Return to Top

Case Study - May 2006

For 13 years I have suffered vulvar pain and discomfort, and experienced incredible pain during sexual intercourse. Vulvodynia has not only caused physical pain, but also depression, fear and low self-esteem. Over the years I have seen at least 15 different doctors and specialists in Denmark to get treatment, and for years I have had at least a hundred treatments (i.e. Difflucan) for yeast infections, which only gave some temporary relief. Years later I was among other things injected with Botox to help the tense muscles relax, but that only helped for 2 weeks. At that time I was ready to give up!

Last year my boyfriend and I moved to Australia for a year and in this connection I was told by my very professional Danish gynaecologist that the possibility of having vulvodynia treatment in Australia was far better than in Denmark and anywhere else in Europe. The last month before our return to Denmark I got in contact with Mr Jantos – fortunately. I went from Melbourne to Adelaide for the first two treatments where initially Mr Jantos taught me some techniques to relax the muscles following exercises that stretched the rock hard muscles. Already at that time, I felt that even though I had a long way to go, I had come so far compared to the last 13 years with no progress.

After 2 weeks I had a new appointment in Melbourne - this time together with my boyfriend who was taught how to do the stretching exercises properly. Even though I would have preferred to continue the treatments with Mr Jantos I was convinced that we would be able to overcome the problem on our own back in Denmark. My boyfriend during 3 ½ years has without exception been totally understanding and supportive, which has been an invaluable comfort to me.

It is my intention to introduce my Danish gynaecologist to Mr Jantos’ methods and hopefully some day similar treatment will be accessible in Denmark/Europe so women do not have to go through years with pain and frustration and no possibilities of getting correct treatment.

Mr Jantos is an extraordinary and proficient psychologist and I would like to thank you for helping me, for being so understanding and professional.

I.L. Age 29 - Denmark - Return to Top

Case Study - May 2006

I was diagnosed with vulvar vestibulitis about 4 months after I started having symptoms. I had initially been treated for thrush, but numerous swabs failed to reveal any evidence of thrush after the first occurrence. My GP referred me to a very good dermatologist, Dr Frances Watkins, who diagnosed vulvar vestibulitis. I had already become aware of the condition through internet research, and had been in touch with Marek. He recommended Dr Watkins and said he would be happy to see me pending a diagnosis.

By the time I saw Dr Watkins, my symptoms had settled considerably. However, Dr Watkins recommended treatment with amitryptiline. When Dr Watkins diagnosed the condition, I felt utterly disheartened. I knew the condition was notoriously difficult to treat, and that it was likely to be a while before I completely recovered. I was desperate to feel normal again.
I decided against taking the anti-depressants simply because I didn’t want to take medication with that many side-effects for such a long period of time. I also wanted to have a second child, and was reluctant to wait that long. I live in Tasmania, but decided to go and see Marek for treatment. I had a couple of consultations with Marek, and everything he said about the condition being a muscular response made sense. We made good progress, and I left feeling optimistic, and went home to practice my biofeedback and dilator exercises.

It has now been 2 months since I first saw Marek. I have had some setbacks – after first seeing him I had terrible pain after my muscles braced from the small amount of work we had done. I restarted the exercises slowly and gently, and my muscles responded well. I also recently had a bout of thrush, which we treated with topical treatment, as I discovered I am pregnant. I am sure this will not be the last setback I have, but at least I know they are only temporary.

I have recently been to see Marek again, and am continuing the biofeedback for a bit longer. My reading had improved, but Marek wanted to see it drop a little more. I will also focus on releasing internal muscles, and the accessory muscles in which I tend to hold a lot of tension. I have had times over the last couple of months when I haven’t had symptoms at all, and I just hope that soon this will be permanent!

Marek doesn’t think he needs to see me again, but we will stay in touch by email. I am just thankful that Marek is so approachable and reassuring, as he has helped me through the frustrating times. Dr Watkins was also very encouraging about me seeing Marek as an alternative to taking the drugs, which helped a lot. I will continue to see her to update her on my progress, as well as my GP who has been great. And Marek will be there in the event that I need to see him again which in itself is reassuring. I’m really glad I became aware of Marek and decided to try the non-pharmacological approach to treating this condition.

J.L. 33 - Tasmania - Return to Top

Case Study - November 2005

My story started about 12 years ago when I started seeing my now husband. Whilst very attracted to each other physically, we decided to save penetrative sex for marriage. Over the 5 ½ years leading up to our wedding, we had a normal healthy sex life save for not having penetrative sex. During that time, I had extensive periods of low back pain and sciatica in my legs which no amount of physiotherapy, osteopathy, remedial massage or acupuncture could help.

Once married, we tried having penetrative sex but I found it incredibly painful. My husband could just not enter me at all. It felt like there were barriers in the way and touching them was very painful. It made me cry. Within a few weeks I asked my GP about it and she gave me an article about vaginismus, suggesting my pelvic floor muscles must be spasming and all I needed to do was relax. That suggestion was not helpful, no matter how hard I tried. The pain was dreadful so we stopped trying for a while as it was putting stress on the relationship.

There was a lot going on our life at that time as we had moved interstate a week after getting married, my husband had been made redundant and my boss had started bullying me. My hours working as a solicitor were long and we were trying to get by on one income in a city where we didn’t have any family or friends. Not surprisingly, I was soon diagnosed with major depression and prescribed anti-depressants.

After taking the medication and seeing my GP once a week for months, I still wasn’t feeling any better and we were both very upset at our inability to consummate our marriage and have a normal sex life. I felt it was all my fault, causing us to engage in a blame game. I felt a fraud and not a whole woman. It made us feel like our marriage was a charade. It weighed on our minds every day. Seeing friends have children made it doubly hard. We didn’t tell anyone at all given it was so incredibly private so we had to suffer in silence. Well-meaning family and friends kept asking when we planned to start a family which increased the distress we felt. I changed jobs but that didn’t help my mood as I soon discovered my new boss was also a bully.

My GP referred me to a psychiatrist whom I saw with my husband for many months. He was convinced the pain was all in my head. I underwent months of cognitive behavioural therapy with him about dealing with pain. My husband talked to him about being very anxious and was given anti-depressants. He was treated for premature ejaculation. He found it very hard as a man to discuss such private matters such as my internal anatomy with a stranger. None of the treatment helped our problem although eventually I weaned myself off the anti-depressants and stopped seeing him.

I then returned to my GP and she counselled me over a period of many months about relaxing when trying to have sex. Every attempt was disastrous and extremely upsetting for both of us. At around this time, I was diagnosed with major depression again so recommenced anti-depressants. Finally when she seemed to have exhausted all options, she recommended we see Dr Richard Reid to see if he could help. I had never seen a gynaecologist before as I hadn’t had the need, not having had penetrative sex.

We saw Dr Reid in April 2003. He conducted a pelvic examination which was the most painful experience of my life. I cried and almost hyper-ventilated at the pain. My husband held my hand and was in tears. He could not believe the amount of pain Dr Reid was able to replicate. Dr Reid asked us both how much we thought my pain problem was mental or physical. I said “70% mental and 30% physical”. My husband said “50% mental and 50% physical”. Dr Reid said “You’re both wrong. It’s 100% physical, the condition has a name and I should be able to help fix it”. We both dissolved in tears. After all the years of pain, heartache and spending thousands of dollars on treatment, someone could help us – it was not all in my head.

Dr Reid told us I was suffering from a chronic pain condition called vulvodynia and had a severe case. Symptoms were varied but the back pain and sciatica I had experienced years before could have been referred pain. The problems with penetrative sex were due to a pain loop which affected the operation of my pelvic floor muscles, causing them to go into spasm whenever penetration was attempted.

He said my condition was too severe for medication and surgery was the only option. He could remove my Bartholin’s glands which were acting as pain receptors. To completely remove all the pain receptors would mean a hysterectomy so that wasn’t an option. He could also remove some flaps of skin which had formed to make barriers. My hymen had grown into a very thick band which also prevented entry so he could remove the hymen. He recommended we think about it and let him know whether we wanted to have the surgery.

After a couple of months, we told our parents and a handful of close friends what we were going through so at least from that time on, we had some support.

I had the first operation a few months later and took three weeks off work to recover. Two months after that, I had the second operation and again took off three weeks. I saw Dr Reid shortly afterwards and he told me I would need to see Marek Jantos to start the second stage of my recovery. He also referred me to another psychologist Jo Langham.

In addition to this, Dr Reid gave me several glass dilators and told me I had to practise inserting them twice a day with the help of lubricant and squeezing my pelvic floor muscles around them. I found this was physically very hard at the beginning, not to mention emotionally distressing. I knew I had to do it but loathed it.

We saw Mr Jantos for several months and he showed us how to use the biofeedback machine. It was very hard work at the beginning but Marek was very kind and patient. The main difficulty we encountered at this time was actually making the time to practise with the dilators and biofeedback machine. My long working hours as a solicitor made it stressful for me to make it home to have dinner at a reasonable enough time, let alone fit in going to the gym and having a life. I was putting on weight and my depression had not eased. Having to make the time for such daily treatment, which was not exactly a pleasurable use of one’s time, was a real nuisance. The anti-depressants lowered my libido as well which didn’t help our cause. I tried using testosterone creams and patches but they didn’t make any difference.

At this time, I was reading one of the case studies on this site which really helped change our minds about the approach we needed to take. One couple had written they were so desperate to solve their problem, they were prepared to move overseas for treatment. That made us realise we were so lucky to have found such wonderful professionals to help us in our own city and we should make the most of the opportunity.

We decided I would take time off work to work on my recovery. What was meant to be a 3 month break turned into a 10 month break. It was the best thing I could have done. I was able to carry out my treatment every day without stress and at my own pace. Mr Jantos was so pleased at the improvement in my recovery pace and that made us feel better. My husband helped with myofascial work several times a week – I am forever indebted to him for that help. It was very painful and often resulted in tears but gradually we noticed the pelvic floor muscles loosen up. I was able to relax generally and took up hobbies which gave me pleasure. We started to eat better and took up a sport together. I had regular massages. I saw Jo Langham for cognitive behavioural therapy - she was incredibly supportive and helped us to face up to our fears about the whole pain issue and whether the treatment would actually work. I worked with a personal trainer to lose a lot of weight.

Finally, after about 4 months off work, we made love for the first time, after 11 years together. Only we will ever know the amazing flood of feelings that triggered. Finally I felt a whole woman. I no longer felt a failure. We had great pleasure in telling Dr Reid, Marek Jantos and Jo Langham who were all so happy for us. I soon stopped the anti-depressants.

All of that leads us to now – our first baby is due in a couple of days’ time! After all those years of heartache, I can write our story for you. All the hours of treatment and perseverance were worth it. Hang in there – it can, and does, work. Don’t ever give up. Stick with it. If you have a partner, keep supporting each other. Trust the professionals. These amazing experts have helped us reclaim our lives. Consider taking time off work if you can manage it. It cost us a lot financially but the value to us of solving this problem is priceless. Mr Jantos has told us I may never be completely cured of the condition but from now on, it’s basically a management issue. We’ll just take it as it comes, confident in the knowledge that we have such fabulous professionals to turn to should we need help.

The main thing we feel about the whole process we have been through is the lack of information in the wider community about the existence of vulvodynia. Too many health professionals seem to assume the person is suffering from vaginismus when that often isn’t the case. There must be a lot of people out there who are suffering needlessly when the treatment is actually out there for them. The fact you are reading this means you are already on the road to some sort of recovery.

J.G. 35 - Sydney - Return to Top

Case Study - February 2005

I am a 30 year old mother of one and I think that my story will not only make an interesting read but will also shock you to the extent I went too to fall pregnant. I have had vulvodynia for a while now and was diagnosed at least 4 years back. Before I had this my fiancé then and I had a normal sexual relationship with no worries, but after a few years things just didn't feel the same and eventually got worse. I thought it was due to the fact that I had and still have chronic pains from endometriosis but surprise, surprise this was a bigger kettle of fish that I wanted to tackle ASAP.

Once I was diagnosed I was advised by the specialist to take anti depressants to help and alleviate the pain. I took the tablets for only a month with some reservations as you can understand, I kept on investigating the side of affects of taking the drugs on a long term basis and I wasn't at all thrilled. So I took the liberty to attend the consulting rooms of the specialist where I advised him of my reservations in taking the tablets on a long term basis. We both agreed that if I wasn't willing then I should stop the medication, which I did.

The situation passed on by (things remained the same) and I put the whole thing behind me and concentrated on my career and then moved interstate. Over a year ago my fiancé then, husband now and I decided to have a family.... okay interesting enough equation which all in all makes sense but how was this going to happen when the dear husband and I cannot physically have intercourse? The thought of not being able to share my love with my husband was killing me but now this became a bigger issue so off to the fertility clinic we went and I had the pleasure of starting a program of artificial insemination.

After 3 months I fell pregnant to my delight. I look at my little boy now and smile because he is my little miracle though I wish I could have conceived him naturally, though I love him just the same.

I was also told that I should have a c-section delivery by my obstetrician who advised me that he was unsure if I had my son vaginally that it may have caused more damage to my condition. So of course a c-section was booked in advance.

I have decided to take the plunge and visit Marek in April this year 2005 since the grand plan is to have another bubba though this time round I would love to be able to do this on our own. I would also love to have a NORMAL relationship with my husband again. So fingers and toes crossed I will be able to conceive naturally. I look forward to commencing therapy with Marek.

K.C. Age 30 - Tasmania - Return to Top

Case Study - January 2005

The Vulvar pain started when I was pregnant with my daughter around 3 or so years ago. It was put down to verrucous veins then and that I just had to put up with it until I gave birth and they'd go away. Sex or any kind of penetration was very painful. Then after having a perfectly normal birth with my daughter, the pain just simply didn't go away. Going back to my GP, the verrucous veins had disappeared but the pain was still as bad as ever.

As the time went on, I was constantly on Thrush Creams not because I had thrush but thrush like symptoms. Burning, stabbing pains and just constantly uncomfortable. My partner found it hard to deal with as neither of us knew what it was and he thought I was making it up as an easy way out of not wanting to be intimate with him. The pain was bringing me down and I couldn't understand what was happening. The loss of interest in enjoying any kind of daily activities, not wanting to go out and the effect it had on my family were huge.

I decided to switch GP's and he then diagnosed the pain as being related to nerve damage and began treatment on Tegretol (Teril) from which there was a slight improvement, just took the edge off the pain but did not start to heal it. At this stage, there was lots of pain from tensing up all night rather than relaxing, I'd wake up as if I’d play sport and was stiff after having restless night sleeps. The only way I could help these pains was to jump straight in the shower and loosen the muscles up a little. By this time I was so depressed and my sexual interest had just disappeared. And being only aged between 18-20, I felt that it shouldn't have happened to me yet.

Then, thanks to a Gyno at the Royal Hobart Hospital that was performing a colposcopy on me, after telling him about the pain that I’d been having, he diagnosed me with a condition that I'd never heard of (vulvodynia) and it was only lucky that he'd just been to a vulvar pain conference a few weeks prior to that. As I was in Tasmania it wasn't well heard of. I felt such relief that someone actually knew something about the pain I was experiencing. He then told me to jump on the internet and do a search on vulvar pain. So that night I went home and typed in vulvar pain and come across this website in which I read case studies and the information on it and I’m thinking this sounds exactly what kind of pain I’m experiencing. So I didn't waste any time in getting in touch with Marek Jantos. He emailed me back the same day and I then called him and had a few discussions with him and with help from the Patient Transport at the RHH, I had my appointment to see Marek in Melbourne.

My partner came along as well because I needed him to have a bit more of an understanding about it as well. Marek was just wonderful. So polite and made me and my partner feel very comfortable with Marek showing my partner what was happening and why there was so much pain around the area. I started the biofeedback program. After a few more visits, there was little my muscles were getting increasingly worse, not just around my lower back, thigh, glutes and stomach but also my shoulders and upper back and I was finding it really difficult to relax them or any of my vaginal muscles. Marek insisted that I go back to my gp and get a few tests done. One being for my thyroid gland which came back fine and one being to go and see a specialist in rheumatism. But my gp had a bit of knowledge on fibromyalgia* (refer below to what fibromyalgia is) and from there we trialled Lexapro 10mg which is an anti depressant, and a SSRI (Selective Serotonin Reuptake Inhibitor). And to my absolute relief all pain had just disappeared! I was finally able to start enjoying being intimate with my partner again.

*Fibromyalgia (previously known as fibrositis) is a condition in which discomfort is widespread and felt within the muscles and ligaments, which may be tender. Damage to joints or other tissues is not a feature. A common association with sleep dysfunction and irritable bowel symptoms suggests an underlying neural irritability. Fatigue, feelings of demoralisation and seemingly insoluble life stresses may be part of the picture.
Fibromyalgia is to be distinguished from 'soft tissue rheumatism' which refers to irritation or inflammation of structures such as ligaments and the synovial sacs (bursae) that lubricate tendon movement. Information from www.trikearoundaustralia.com.au/arthritis_types.htm

Without Marek's help and broad knowledge, I probably would have just given up and just put up with the pain of it all and without a doubt it would have gotten much worse. I just hope that if there are women with this condition not only in Tasmania but worldwide, that they do persist with finding the information they need in order for the pain to be resolved for them. I also hope that there will be more GP's with more knowledge of the condition.

T.N. Age 26 - Tasmania - Return to Top

K A -Sydney

In addition to the symtoms that I previously mentioned I was also suffering with frequency and urgency issues in regard to emptying my bladder. I had two appointments with Marek in Sydney and we did some release work in regard to these issues.  After the first session the urgency had significantly decreased, and during the night I did not have to visit the bathroom once whereas before I was going to the bathroom 4 to 5 times per night. After the second session I have noticed that the urgency no longer exists and over the last two nights I have not had to go to the bathroom once, so I have been able to have uninterupted sleep yeahhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh.

Marek took my biofeedback readings at these appointments and my resting baseline has decreased from 6.7 to 0.8 which is a huge difference and also means that I no longer have to continue with the biofeedback and now my focus is on the release work.

Thank you so much to Marek as I am begginning to feel human again, which also means a great release of tension worry and stress about what was happening to my body.  I am so grateful that I have been able to work with Marek as I am already seeing results.

K A -Sydney - Return to Top

Case Study - August 2004

It’s been a long journey. Having been brought up with a Christian background, I had never attempted sexual intercourse until 3.5 years ago I got married to a wonderful man & basically from our wedding night we discovered we were unable to have sexual intercourse. In my teens I tried once or twice to use a tampon with no success and thought it was something that I would just ‘grow into’. My vagina was like a brick wall, it was very painful with nothing being able to be inserted. But looking back this was the first signal that I did have a problem.

At first I thought the problem was just psychological, because my conservative family upbringing always avoided discussion about sex and I grew up with a negative perception about this whole topic. It seemed that my inability to have intercourse was just another symptom of the wider problem of my inability to express myself or my emotions because I also did not have good communication role models while growing up. Unfortunately all of this came to a head upon becoming married.

Initially, I had counselling to try to see if talking through some of the issues would help with this problem. But then I also saw my GP who referred me to a gynaecologist. I was diagnosed with chronic vulvar candidiasis and because of the localised pain this was causing, this was thought to be in turn precipitating vaginismus. I was placed on several months of an antifungal medication and the infection cleared. But the problems continued and I ended up having a vulvoplasty, a small operative procedure. Even then my symptoms continued, so the gynaecologist then finally referred me to Marek Jantos.

I began seeing Marek approximately 18 months ago. It turned out I had a condition called vulvodynia with particularly tight internal pelvic muscles. The vaginal opening appeared to be extremely small & I found I was bracing this area involuntarily due to my feelings of anxiety.

From my first appointment I felt immediately comfortable and at ease with Marek’s genuine caring approach. Finally I had found someone who truly recognised the nature and anguish of my problem, and that there was no “quick fix” to this problem, but rather as Dr Phil says it needed to be put on “project status”, to move through the process in baby steps.

We began using the biofeedback “U-control” machine. I used this in daily sessions along with exercises Marek taught me in the initial aim of achieving more control in utilising and relaxing the vaginal muscle groups. There was continued but slow progress and I was then able to use dilators which were increased in size every month/couple of months. The amount of improvement I saw in my ability to use biofeedback and enable opening of my vagina even to that stage was remarkable. Especially when not so many months before I was unable to have any entry whatsoever. However despite this progress we were still unable to have intercourse, any attempt thwarted due to continual bracing, anxiety & extremely tight internal muscles. This required further release work, which was again successful.

The rollercoaster ride continued, at times I felt so positive and encouraged by the progress, but other times it was hard to persevere with my exercises Marek had given me because we still felt so far from achieving sexual intercourse, continually expecting failure. My husband and I became very pessimistic and felt hopeless on many occasions and certainly our failure created tension in our relationship, and our problems permeated all facets of our life. One could not help thinking if we would ever overcome this and I started to think about what would happen to our marriage and my future. Thankfully my husband was a great support and encouragement although it was causing him a lot of stress and anxiety too.

Despite the difficulties though, Marek was very encouraging and he noted progress each visit which gave the confidence to keep working at it and strive for success. As time went on it was clear the stress of work and life tended to channel into the tension of my muscles and exacerbate my vulvodynia. But with Marek’s instruction on the muscle release work, breathing, relaxation exercises and stretching I found this beneficial not only in my vaginal region by also in relieving my general muscle tension and my general wellbeing.

Another aspect of my difficulty was the isolation one feels with such a problem. Apart from my husband there was no-one I felt comfortable in talking to about my problem. To everyone else we looked like a normal married couple living a normal married life but of course this was not really the case. My visits with Marek then became so important to share my feelings, my frustrations all to someone who always cared, understood and encouraged with such warmth and friendship.

While vulvodynia and inability to have sexual intercourse may seem a physical in a way the most difficult aspect was the emotional toll this took on myself and my husband. My self-esteem became lower and I found it hard to maintain my relationships at times with friends and family. Along with the demands of fulltime work, being a wife and keeping afloat it was a exhausting challenge to overcome my sexual problems.

Just recently my husband & I finally had sexual intercourse for the first time after 3.5 years of marriage and failed attempts. Without Marek’s ongoing support, being accountable and open to him and the continual encouragement and hope he gave me we would simply not have succeeded in this.

Thus I would urge you, don’t give up or think you are alone with your problem. Through case studies such as this I was amazed how many thousands of people in Australia have this condition, and it was of great reassurance. Especially when like myself, people have come through immense challenges to be successful in the end.

There is still a process of rebuilding in my life taking place but I am so thankful for this breakthrough and look forward to my future ahead.

It doesn’t happen overnight, but it does happen!

V.M. Age 28 - Melbourne - Return to Top

Case Study

Since the birth of my daughter in early January this year, I had been experiencing severe vaginal pain. At my 8 week check-up, my GP Obstetrician told me that I probably just needed a little more time to heal up after having stitches and to leave it a few more weeks before trying to have sex again. I took the advice, but the pain didn’t improve. I experienced constant pain – burning, itching, throbbing etc. so I visited my GP again and was diagnosed with thrush and he tested me for other bacterial infections as well. He prescribed a thrush medication as well as an oestrogen cream. After completing the course of thrush medication, which made little difference, I started the oestrogen cream. I was in so much pain I could barely insert the applicator and ended up in tears most of the time. The test results came back with nothing, the oestrogen cream was affecting my milk supply so I was advised to stop the medication and just “be patient”. I made an appointment with my gynaecologist who tested me for just about everything, to no avail. I was told to stop using soap, only use unbleached toilet paper, only wear cotton underwear and that I would just have to accept that it would take a while for me to get back to normal. He kept saying to me that my libido would improve slowly, even though I made it quite clear that this pain was not just occurring during sex – it was constant.

I tried physiotherapy, massage and chiropractic therapy to ease the pain. All of the practitioners got to the point where they told me there was nothing else they could do for me.
Whilst having a coffee one afternoon in a local café, I picked up a magazine and found an article titled “Sex is too painful”. I read the article and was surprised to find that the author had all the symptoms that I was experiencing. I wrote down the web address at the end of the article and got on the net as soon as I got home. There was a link to Marek Jantos’ own website. I went to the professional contact link and typed in my details and a brief rundown of the symptoms I was experiencing. Within half an hour (8pm on a Sunday night) I had a phone call from Marek Jantos. We made an appointment for the following month.

After the first appointment, I felt a huge amount of relief, especially once I realised that what I was experiencing was something that could be treated. I began the biofeedback treatment straight away and have now been doing this for 8 weeks. After my second appointment with Marek, he suggested that I could expect to be able to have sex by the time I had my next appointment. I remember laughing about this when I told my husband. But he was right!

Although I am still experiencing occasional mild discomfort, it doesn’t stop me from doing simple things like walking, sitting, standing etc. as it was before.

I am so grateful to the woman who wrote the article about vulvodynia as it enabled me to diagnose myself and finally find some relief for the constant pain I was in. I have found that whilst doing the biofeedback treatment I have had ups and downs and have been depressed when things don’t improve as quickly as I would like. However, after seriously thinking I would never be able to have sex again or have any more children, I am now starting to see a light at the end of the tunnel and know that I will be able to be ‘normal’ again soon.

Reading other women’s case studies has been very encouraging and kept me going when I start to get disheartened. Having a supportive husband has been an enormous help. I only wish that more medical practitioners were educated about vulvodynia so women did not have to spend so much time and money trying to figure out what was wrong with them before finally finding relief from this debilitating condition.

A.Y. - Age 28 - Melbourne - Return to Top

Case Study

I went to see Marek Jantos in Sydney because of continued vulvodynia pain and spent two days with him where he did a series of massages and taught me how to use the biofeedback machine. By the time I arrived back home from Sydney I was much more relaxed and confident and managed to have sex with my husband for the first time since March this year. It was a very empowering experience for me as I felt that at least I was gaining a part of my life back and that there is a possibility of a light at the end of the tunnel. I still experience pain on sitting for periods of time or driving but trying to relax is very important and I continue to use the biofeedback machine and live in hope of someday having a full recovery. At least Mr. Jantos is listening to us and helping us, that's half the battle.

L.R. - Age 46 - Brisbane - Return to Top

Case Study – N.M - December 2003

Two and a half years have passed since I was diagnosed with vulvodynia, 18 months since I became a patient of Marek Jantos and over a year since I wrote my first case study. Although my particular condition has been severe and slow to respond to treatment, it has been worthwhile persisting. Although I am not yet free of symptoms, I am excited by a recent break-through: I was able to have intercourse with my husband for the first time in 3 years (only the second time in our marriage). In the past, I despaired about my inability to tolerate intercourse due to pain, but on this occasion, I cried tears of joy. I hope my story might bring hope to other sufferers of this debilitating condition.

Looking back on my journey since being diagnosed with vulvodynia, I am most grateful to Marek Jantos for initiating three key factors in my progress: a holistic approach; empowerment; and moral support.

Marek’s holistic approach has had a positive impact on not just my vulvodynia, but also my general well being. While I have continued therapy directly related to vulvodynia and the pelvic floor muscles, such as biofeedback, dilators, massage and stretching, Marek has also encouraged me to make a commitment to my general health. This has included recognising the importance of healthy habits such as good sleep routines, diet, exercise, stress management and focussing on the positives rather than the negatives. Marek also introduced me to relaxation and breathing techniques, which when practiced regularly have helped me deal with both pain and anxiety. These techniques and knowledge do not offer a ‘quick-fix’, but my progress has become slowly apparent in the last year, and I am now in a better position to deal with life (and vulvodynia’s) ups and downs.

I have found these techniques enormously empowering. It has been fascinating learning more about my body and how I can consciously control my muscles, breathing and relaxation to help deal with pelvic pain and anxiety. I no longer feel that I am a passive recipient of medical treatment, as I had experienced in the past while enduring the side effects of various medications (which also proved to be ineffective), two surgeries, which were necessary (and skilfully performed by Dr Richard Reid) but physically traumatic, and Botox injections to the pelvic floor muscles, which offered immediate (but unfortunately short-lived) pain relief.

Vulvodynia and resulting depression and anxiety have had profound ramifications for my self-esteem, sexual desire and relationship with my husband. I am fortunate to have been blessed with such a patient and caring partner, who has supported me unconditionally throughout. I would encourage partners of other vulvodynia sufferers to be sympathetic and patient, as the guilt and other negative emotions associated with sexual dysfunction can be devastating to the self-esteem. Our marriage is stronger for working at this problem, as it has required a real commitment on both of our behalf. We are now at the stage of rebuilding physical intimacy into our relationship, as although I am now physically able to have intercourse, I need time to adjust to being a ‘sexual being’ again, after associating sex with pain and failure for so long. Marek assures me that in time this will arise naturally as I continue to progress.

Marek Jantos is an extraordinary person; not only is he extremely knowledgeable, but his compassion is truly inspiring. I owe him much for his encouragement and for the fact that he never gave up on me, even when the pain was wearing me down and I was losing hope. Women who are referred to Marek should take heart and be confident that with his help, support from your loved ones, and your determination, you will find relief from vulvodynia.

N.M. Age 29 - December 2003 - Return to Top

First Case Study – N.M. - November 2002

Only eighteen months ago I had never heard the term ‘vulvodynia’, but the more I learn about it, since diagnosis and commencing treatment nearly 18 months ago, the more I realize how complex and difficult it can be to treat. In my case, I clearly experience two aspects to the condition: pain at the entrance of the vagina and clitoral pain. Although some contributing factors have been easily recognised, such as my long-term back and muscle problems, hypertonic pelvic floor muscles, chronic yeast infections, and even my fair, sensitive skin, I am still in the process of experimenting with treatments one year later.

I have been suffering from vulvodynia for more than 12 years, since my teens, although even as a child I remember getting pain ‘between my legs’. In my early to mid teens, I found it impossible to use tampons and when I first attempted sexual intercourse at 17, it was also incredibly painful. I thought my pain was due to a lack of experience or maybe I was ‘too small’, but I am now 28 years old and have never had intercourse, used a tampon or had a gynaecological examination without feeling significant pain. This pain is now quite disabling; I have been unable to have sexual intercourse for the last two years, which is very unfortunate as two years ago I married a wonderful man. I suffer so much guilt and frustration about my inability to live a full married life. My pain has stopped us from even attempting sex anymore and has had devastating effects on my self-esteem, confidence and libido.

In my early to mid twenties, I was able to have sexual intercourse, but would experience a sharp, stabbing pain around the entrance of the vagina, especially on the initial penetration and thrusting. I would often have strong spasms of the vaginal and thigh muscles due to the pain. Afterwards, I would feel a stinging sensation from the ejaculate, and feel very sore and irritated for up to a few days later. The pain during sex could fluctuate between making penetration impossible, to being relatively mild and allowing me to still have some enjoyment (after the more intense pain of the initial penetration). Most of the time it fell in the middle somewhere, but gradually worsened over time. I now have a constant burning, itchy, irritated feeling, even without having sex. I have found some activities, like bike riding, wearing tight jeans or even sitting, quite uncomfortable, and sometimes too painful to do. In recent months, by taking careful note of what I was feeling and examining myself with a mirror, I have narrowed down the focus of the pain to being worst at the 5 and 7 o’clock positions at the entrance of the vagina, where I can also see two small red blotches. I also feel pain at these points slightly inside the entrance. The left side is more painful than the right.

Whenever I had a routine pap smear or examination, I kept expecting the doctor to comment on an abnormality of some kind, which would give me a clue to why I was feeling so much pain. Due to the intimate nature of the problem, I was reluctant to bring it up with doctors, especially after being told by the first two I confided in, that I needed to ‘try to relax’. To me, this implied that I was bringing the pain on myself and it was ‘in my head.’

The pain escalated significantly about two years ago, when I started getting recurrent yeast infections triggered by several prescriptions of antibiotics for persistent tonsillitis. I had experienced thrush prior to this, although I was unaware of it until a doctor noticed it during a routine pap smear. I tried Canesten cream, several 12-week courses of Diflucan and the anti-candida diet, but little relief was gained.

It was at this time that I caught the end of a segment on a medical/lifestyle show on TV about vulvodynia. It gave a web address for further information, and when I looked it up it I was astounded at how similar my symptoms were to the description of the condition. Armed with this knowledge, I mentioned it to a new doctor, who was treating me for thrush, who confirmed the diagnosis and referred me to Mr Marek Jantos for treatment.

Marek Jantos did an assessment of the tension and stability of my pelvic floor muscles, and I started biofeedback treatment in order to learn how to relax these muscles. Under the guidance of Marek, I did biofeedback for 5 months and used dilators for 3 months, but thrush infections and the persistence of vaginal pain slowed my progress. Despite this, one positive outcome has been that through using the breathing techniques Marek has taught me, I now have more control of the muscle spasm that would occur on touch or insertion of a probe or dilator. Using breathing techniques, the muscle spasm is not as violent or frequent. I am now able to insert the probe or dilator relatively easily, whereas in the beginning it took some time to work up to it. When using the dilators or probe, I still feel pain both at the lower part of the entrance of the vagina and at the upper part, around the urethra (especially when tensing the muscles.) I also feel an irritated, burning sensation afterwards that an icepack can help soothe.

Before I started treatment, I felt like my whole vulva hurt. Now I am able to distinguish between the pain at the entrance of the vagina and a second aspect; clitoral pain. This pain is focussed in the clitoral area, although sometimes I can feel it radiating up into my lower abdomen or down into the urethra area. Sometimes I feel like I need to urinate, even when my bladder is empty, and occasionally I experience some discomfort on urinating. The quality of the pain is different to the pain at the entrance of the vagina. Although it is also a burning-like sensation, I also experience tingling and an over-stimulated, almost painfully aroused feeling. This pain has become continual and can be very distracting.

After intensive massage and myofascial work with Marek, I gained significant relief from the clitoral pain. I have had back and related muscle problems since the age of 11 when I suffered injuries doing gymnastics. These ongoing problems, particularly tightness in the gluteal muscles, seem to be a contributing factor in my vulvar pain. When Marek pressed certain places in the gluteus, I suddenly felt the pain increase in the clitoral area. After having appointments on consecutive days with Marek, I was given the most relief I had experienced. Immediately after the appointments, I felt the pain had been stirred up, but the next morning, once it had settled down, the clitoral pain had gone from 8/10 down to around 2/10 (10 being the most pain experienced). This relief lasted for around a week, but as my muscles tightened up again, the pain gradually increased.

The relief from the clitoral pain has been promising, though it starts to return sometime after treatment. Unfortunately, we still have far to go with understanding all of the factors involved with the pain at the entrance of the vagina. Experimenting with various treatments has been expensive and time consuming and the chronic pain has been wearing me down, physically and emotionally. I suffer from a lot of anxiety at times, and I have to fight very hard not to give in to feelings of hopelessness, but I am afraid that I will suffer from this condition for the rest of my life. I am lucky to have a supportive and devoted husband, who also attends my appointments and has been actively involved in the whole process. I am also very fortunate to be treated by Marek Jantos in particular, whose compassion, empathy and wisdom has helped me keep a positive attitude through this difficult process.

N.M. Age 28 November 2002 - Return to Top

The following is the history of my struggle to treat my condition – N.M.

Therapy - (Marek Jantos)

· Biofeedback.
· Dilators.
· Breathing techniques.
· Massage, Myofascial work etc.
· Muscle Stretching.
· Progressive muscle relaxation.
· Managing stress and anxiety.
· Healthy, balanced lifestyle – diet, sleep, exercise, relaxation, positive outlook etc.

Surgery – (Dr Richard Reid)

· Bartholin’s glands removed, neurovascular island flaps to correct contracture of vaginal   opening, (Feb. 2003).
· Botox injections to pelvic floor muscles, laser, Z-plasty of scar tissue, (May. 2003).
· Improving scar tissue, Laser, Mirena IUD, (Jan. 2004).

Medication

· Endep: (Unsuccessful – 6 months)
· Allegron: (Unsuccessful – 4 months)
· Tegretol: (Unsuccessful – 2 months)
· Mexitil: (Unsuccessful)
· Neurontin (Unsuccessful)
· Ovestin cream (Helpful)

My desperation for improvement has helped me deal with the unpleasant side-effects of many of these treatments.

Treatment of Yeast Infections

· Depo-Provera.
· Diflucan.
· Boric Acid vaginal capsules (excruciating to use, but got rid of the thrush for a while).
· Monistat,
· Canesten.
· Anti-Candida diet.
· Natural yoghurt.

Treatment of Bacterial Vaginosis

· Clindamycin Pessary.
· Metronidazole Acidophilus Gel Pessary.

Treatments to soothe skin and reduce irritation

· Avoiding irritants.
· Barrier cream.
· Sitz baths using baking soda.
· Cold pack.

Case Study - Tasmania

My problems began about 3 and a half - 4 years ago after years of prescribed antibiotics due to a skin disease. I was diagnosed with having a heavy thrush infection, and was prescribed the usual creams, nilstat, diflucan and ketaconazole tablets. The intolerable genital pain remained, radiating through to my buttocks, as well as this horrible red rash that reacted to every cream prescribed, even those from a chemist which was a general dermatitis/eczema cream.

I could barely walk, sit, or care for my family, sex was out of the question, my social life was non-existent and the un-ending intolerable pain had me in an emotional mess, and in absolute despair. No pain killers worked, and I tried gabapentin which failed, and then epilim which failed also and caused me to lose half of my hair as a side effect.

I had many swabs, tests, blood tests, and an ultrasound which all came back normal. I felt like some sort of medical mystery, and in all consulted 6 GP's, a professor, gynaecologist, bowel specialist, gastroenterologist, pathologist, 2 naturopaths and a dermatologist. The worst insult I experienced was when one of these specialists wouldn't answer my calls, regarded me as a nuisance, wrote and told my GP that he had no interest in treating me once all his prescribed creams and tablets failed. It was even worse when I heard the staff discussing my private business and how frustrated the doctor was with me.

The only one who stuck by me was (and continues to be) my marvellous GP and I dont know what I would have done without his support and his advice not to give up.

Not much is known by many doctors here in Tasmania about vulvodynia, and no treatment is available, and as I was put in the 'too hard basket' and left to suffer by the specialists I visitted, and I find that very hard to forgive.

I was about ready to jump off the bridge, as I couldnt handle this any more, even after attending emotional counselling. The pain had ground me down that low I dreaded waking up to endure another day. Surely I thought there must be someone out there somewhere that could help me, but nobody here knew of any vulvodynia specialists, and I was told I would have to go to a pain clinic and be pumped full of yet more drugs.

In desperation I searched the internet, and found Mr. Jantos' website, and quickly rang and made an appointment in Melbourne, with a specialist's referral. On meeting Mr. Jantos my husband and I were pleasantly surprised. He is a very pleasant man, caring and understanding, whose knowledge and expertise about vulvodynia is remarkable. I felt finally like I was being treated like a human being despite my condition and felt completely at ease with Mr. Jantos. It was a relief to find someone who finally understood and could treat this disabling condition.

After two trips to Melbourne, and with the support of my caring husband who has participated in my home treatment, I have progressed a little, but have yet my skin condition to resolve so as to enable further treatment. Due to being allergic to everything I have applied thus far, I was pleasantly surprised to find a that a pure calendula healing cream - formulated by a specialist on the mainland - helped me. She told me that the dermatitis was drug poisoning from all of the drugs and creams I have been prescribed, and I am certain she is right, as a naturopath verified this. Hopefully, the skin condition will be on the mend when I attend my next treatment, and I will progress to a normal life sometime in the future .

Thank you Mr. Jantos for your understanding, unfailing support, compassion, and encouragement, without which I could not have carried on. You are an absolute God-send to women with this devastating complaint. It is my hope that the medical profession are made more aware of vulvodynia, its effects on ones life, and that help is available. I hope my story benefits someone, and I will send in a conclusion after my further treatment. TASSIE LADIES < HELP IS OUT THERE!

PS - Before travelling to Melbourne I was medically advised to try a tens machine for pain relief from the vulvodynia and eczema/dermatitis. I appear to have become allergic to every cream possible and hope of pain relief was lost. I walked into Mr. Jantos rooms, wired up to this contraption and had found that it only helped to alleviate some of the pain. When I completed treatment that day, I was still in a lot of pain, but able to cope without the tens machine. I was glad and relieved to unload that machine as you may imagine the concern and embarrassment it would have caused at the airport, unless I promptly handed over a letter explaining it to airport staff.

S.M. - Age 42 - Tasmania - Return to Top

Case Study

My partner of 4 and a half years and I have always enjoyed a healthy active sex life but two years ago this all changed. I was a typical young happy teenager. I had just finished high school started my career and was in a happy 2 year relationship with my high school sweetheart. Then two years ago I started getting yeast infections all the time. I went to many doctors who told me the same thing. “It’s very common you just have to wear cotton knickers, don’t use harsh soaps and eat yogurt etc....” I did all of that and the infections kept coming back. All the doctors did was prescribe thrush treatments which merely subsided the pain but didn’t get rid of the problem.

I started to become very depressed as no matter what I did and who I saw the thrush infections kept coming back. I tried to not let this affect my relationship with my partner but every-time we had sex it would burn, sting and it felt like he was hitting something inside and afterwards was even worse. The opening of the vagina was very sore to touch and the whole area was red raw and dry. I started thinking something was just not right with my body and my self esteem became very low. It was very hard because I was moody all the time and although my partner was there for me the whole time we had drifted apart sexually which made me feel depressed, frustrated insecure and useless. My sexual desire was completely gone and I avoided any intimate moments which may have led to sex. It slowly got worse and worse I noticed that I couldn’t wear any tight pants or g strings, I couldn’t sit down for long periods of time in the end I couldn’t even wear tampons as my vagina area had completely closed up. At this point I was an emotional wreck, no one would help me, any doctor I saw told me it’s a common thrush infection and every woman gets it.

One year later I was reading a Cosmo magazine and an article in their reality section that I read was very interesting. It was called ‘My vagina is depressed’ I read the article over and over again saying out loud I have this and I have that. All the symptoms this woman had were very similar to mine. At the bottom of the article was the ‘Vulvar Pain Clinic’ website which I immediately logged on to. As I was reading I diagnosed myself with Vulvodynia I was very excited and surprised my answer was in a Cosmo magazine. My heart sank when I saw that there was no clinic in Perth so I rang Mr. Jantos on his mobile and described everything to him he was very helpful and understanding. He explained that he had another Perth patient flying out to see him in Adelaide in about three weeks and he would love me to come too. I couldn’t give him an answer there and then as I had just moved out of home and didn’t think I could scrape up the money to fly to Adelaide. I was desperately trying to find the money and at this point my condition was at its worst. Sitting all day at my computer was so painful and as soon as I got home I’d be lying on the couch in tears in baggy clothes and with an ice pack on my vagina trying to numb and cool the burning, stinging, stabbing itchy feeling I was feeling constantly. On top of everything I also had developed constipation and hemorrhoids which I couldn’t work out why I just put it down to being cursed. I explained my situation to my nanna who not only lent me enough money to go but enough for my partner to come as well. I was over the moon and counting down the days till I flew out to Adelaide.
My first appointment with Marek was a bit scary as I didn’t want to get my hopes up with high expectations as I had so many disappointing appointments with doctors enough to last me a life time. Marek was so professional, caring and understanding I felt completely at ease with him. We progressed very quickly in the two days I was in Adelaide and we learn’t that it wasn’t just my vaginal muscles that are very tight it’s also my thighs, stomach, lower back and bottom which were as hard as a rock. This then explained why I was having trouble going to the toilet as my gut muscles had tightened up. Marek involved my partner in everything and went through exercises we could do at home together. Including how to use the biofeedback machine and dilators required to improve my condition. I left feeling sore from the extensive muscle work that we had to do because of the short time we were there but I felt very excited that we had made such great progress and had a positive outlook for the future.

Back in Perth I worked hard with my stretching exercises and was emailing Mr. Jantos with my progress on a regular basis. I was still having trouble going to the toilet and saw a nutritionist who said I had developed irritable bowel syndrome. I then heard Marek was coming to Perth to give a talk to all the women over here about Vulvadynia and he wanted to make another appointment with me. I thought I had improved so much as I wasn’t in constant pain anymore. My muscles were still very tight and it was still uncomfortable to have sexual intercourse but I had definitely improved from what it used to feel like and my sexual desire is slowly coming back.

Today I am seeing Marek every month and we are now concentrating on the deeper muscles which are very tight, sensitive and sore. I am over the moon that Marek is now coming to Perth every month because I have high hopes for the future that I’m going to keep on improving with time. Thanks heaps to my beautiful partner you’ve stuck by me and I couldn’t have done it without you and a big thank you to Marek for everything you have done. You are so professional, kind and very understanding I don’t know where I’d be without you and I look forward to more appointments in the future because I know I’m going to get better and I’ll be back to being a normal healthy happy sexually active 20 year old.

K.J. - Age 20 - Perth - Return to Top

Case Study - Rachael & Ben

We first started going out in our early-mid twenties and were married 3 years later. We both decided to wait until we got married before having sexual intercourse. After our wedding we were disappointed at not being able to achieve penetration due to muscle spasms. There was a lot of fear associated with this from Rachael’s point of view and this impeded our progress. We still, however, were deeply in love and had an enjoyable physical relationship.

We first sought help from a gynaecologist however we were disappointed with the lack of support and understanding of Rachael’s condition. To rule out physical abnormalities, Rachael underwent a full examination under general anaesthetic. Everything seemed in order and we were left with “Don’t worry – you’ll get over it!” from the doctors. We even briefly visited a sexual therapist who was uninterested in getting to the cause of our problems.

A few years later Rachael summoned up enough courage to see another doctor about her condition. The desire to have children was now overwhelming. This time the female doctor from Healthy Women suggested another sexual therapist. The therapy concentrated on Rachael’s mentality toward sexual intercourse and some simple Kedgel exercises to encourage familiarity with the vagina. After 6 months Rachael had only progressed to being able to insert one digit (at that time it was considered a milestone!!). The therapist then suggested that we see Marek Jantos in conjunction with continued counselling.

The first meeting with Marek was a revelation. For the first time we had the feeling of direction and understanding. Marek was able to explain how the “U-control” could help Rachael contract and release the muscles in the vagina. Until then, Rachael had no idea how to control these muscles. Rachael mastered the “U-control” surprisingly quickly and Marek instructed us on exercises and breathing techniques to facilitate a relaxed vagina. After a few sessions we progressed to inserting dilators. Having tried this before – we were ready for failure. BUT – knowing how to contract and relax the vagina AND the right breathing techniques – Rachael was able to progress from dilator 1 to 6 in about 2-3 months. We had successful intercourse after only seeing Marek for approximately 6 months.

Now – we cannot believe how far we had come in such a short space of time. If only we had seen Marek earlier. Now we are eagerly awaiting pregnancy tests each month and are so excited about our future.

R.B. Age 31 - Brisbane - Return to Top

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