Eventually I had an internal ultrasound to see if there were any cysts in my urethra/bladder that were causing pain, but all was clear yet the pain was escalating. The pain was at its peak in 2009/2010. I was eventually told that it was psychological and further told by a female psychologist that in most cases it is psychological, this made me feel very low.

I was munching down Pandeine Forte but not coping so my boyfriend took to me to the Royal Women’s Hospital (RWH) in Melbourne, but they could not help and scheduled me in for a vulvar clinic three months down the road. While waiting I stayed on Panadeine Forte. When the clinic time came it was confirmed that it was clitoral pain and not psychological. I was prescribed antidepressant tablets to take orally but because I was on other antidepressants already I had to come off these before starting the new ones. I asked if the were any other medications and as a result I was prescribed Gabapentin (800mg x2/day), maximum dose, and a numbing gel. I kept going to the clinic every three months but there was no change in my symptoms. I was then prescribed an antidepressant cream to apply to the clitoral area. After a year of using the cream nothing changed. I sought alternative medicine consults and tried acupuncture and hypnotherapy twice a week and this took some of the edge off the pain but then plateaud and no further improvement was made. I returned to the RWH and told them nothing was working, the senior specialist then discussed with me the possibility of surgery where the removal of the clitoris was discussed. I was bent on having my clitoris removed to get rid of the pain.  I reached the point where I did not want to live anymore, I could not cope and could not maintain any relationships. The pain was unbearable. The more I searched the internet the more hopeless it seemed.

My sister could see I was not coping and fading and she searched the internet and found the vulvodynia.com.au website. I was so skeptical and felt it was another stab in the dark but went along with my sister to the first appointment. After a comprehensive discussion of thehistory and pain mechanisms, Marek explained the cause of the pain in a waythat made sense for the first time in four years of consults and visits. I felt as if I had finally received some insight and an answer. It all made so much sense and so I started therapy. After a couple of session with Marek I stopped all other appointments as I realized other therapies were of no benefit – I stopped the hypnotherapy and acupuncture and reduced my session with the psychologist.

I did a course of intensive therapy in Adelaide and my pain has reduced at least 70% and its made a huge difference. Previously I could not go for a moment without being aware of my pain and now I can function without even giving it a thought. I can finally see some light at the end of the tunnel.

I’m looking forward to ongoing therapy with the hope of seeing this pain further reduced.

It all started shortly after our Honeymoon. I came back with a dreadful yeast infection that I thought had been caused from the bubble bath at the hotel and/or too much sex! I took the usual over the counter creams and tablets to get rid of it. It would go away then my Husband and I would have sex and would both get symptoms of thrush. We again both got treated with creams and the problem went away for a few weeks. Then I got it again. I went to the doctors who gave me nizoral 10 days and more cream which I used. This time, the infection went away, the pain did not. Sex became painful and it felt so tight and burned I could not even tolerate it much less enjoy it. I could not understand I had never had pain from sex. I knew this was way more than a yeast infection. It felt like I had flames between my legs 24/7 and even when I had no clothes on at all I was in such pain! Jeans or pants and finally even underwear was too much to bear. This all happened in a short period of 3 months.

So began the journey of finding help. I was given tests for STI’s had blood tests, swabs and ultrasounds. Got referred from Gyno to Gyno and explained to them as they proceeded to shove a speculum inside me that it was burning and felt like my skin was being ripped. They could see no physical obstruction so concluded there was no problem, and no physical reason why I couldn’t have sex. I could not wear underwear let alone have sex!  Even when I was referred to a vulva specialist, she on two occasions wrote letters back to my gp explaining she ‘questioned physiological factors’ as my description of pain was not typical or like anything she had seen before, and she was supposed to be familiar with vulvodynia. When I questioned the possibility of vulvodynia she said it was not possible as I had not suffered from first tampon use. After much research I could see I was suffering classic symptoms of secondary vulvodynia, even after I went back and showed here the research she insisted my problem was neurological. After CT scans and Mri scans came back clear, and the neurologist said this was not a neurological condition, she said that pain management was the best option she could give me. Another wrote to my GP saying ‘with distraction the examination was not painful’. (I was screaming the whole time) Needless to say I did not go back to either of these ‘specialists’.  This, I have now sadly learned is a common occurrence for most if not all vulvodynia sufferers.

I constantly felt like the so called ‘specialists’ were not telling me something or trying to pass the book to some other ‘specialist” I have lost all faith in doctors. I took it upon myself to find a solution without them. After 3 months of intense pain on a daily basis I could not wear pants of any kind and constantly had ice packs trying to cool the burning. I consulted the internet which rewarded me with Marek Jantos’ website. I made an appointment to see him the following month. My Husband and I were greeted by an extremely calming knowledgeable man who showed us what my pelvic floor was doing with the use of biofeedback. Up until then my Husband doubted there was a physical reason for my pain. This made him see, and he has been 100% supportive ever since.

I soon started with dilators, I was terrified because I could not even insert a mini tampon anymore, but Marek was ever patient and encouraging and taught me deep breathing techniques to relax my pelvic floor.  I started working with #2 and then moved to a #5 but when we tried intercourse it was still terribly painful. During this time, for some reason I also developed bladder, clitoral and ureathra pain, hemorrhoids and an anal fissure. Marek knew this was all linked with the Vulvodynia and started to work on the trigger points around my bladder neck and urethra. I developed a burning sensation in my hands and feet and was becoming quite distressed with my state of health and slow progress.  Marek put me in touch with a support person who had been a sufferer for 8 years – Sherie. It was such a relief to know she had been through the same thing and came out the other side.  She will never know the confidence she gave me in my ability to overcome this and how much her warm and calming nature meant to me. It made all the difference. I also began endep 20mg which controls the nerve pain in my hands and feet nicely, although not ideal it is working for now. For the moment I am more focused on my recovery from vulvodynia.

My husband and I decided to go to Adalaide to work with Marek and Sherie on a 4 day intensive therapy session in order to resolve the bladder pain and to make more progress with the penetration side of things. The progress I made there was quite remarkable. I would highly recommend this to anyone seeing Marek for vulva pain. We worked on the tension held in my hips, glutes lower back and tummy as well as all the internal trigger points. Sherie was even kind enough to show my Husband how to do the trigger point work so as he can help at home.  I was immediately able to use tampons, and a few weeks after coming back from therapy we could have pain free sex again! I would say now sex is pain free about 85% of the time, sometimes a little burning happens afterwards and we sometimes have to do stretches before hand if I am feeling sore but for the most part I can enjoy once again what I used to take for granted, in fact I would go as fart as to say sex is the only time I do not feel pain. I still have a daily level of pain 2/10 on average.

I recently persuaded my GP to put me on long term difflucan because I am convinced I flare up with a yeast infection at least once a month, since being on these I rarely have burning, it is more of awareness and a slight ache which I know is purely muscular, so to keep up with the trigger point work I see a women’s health physio close to home every few weeks to make sure things don’t get nasty again. I plan to return to see Marek in a few months for a follow up.

Although vulvodnia is not something that can be cured as such, I now know exactly what I have to do in order to prevent the pain from going back to how it was. I have learned to control muscles I did not even know existed and how to relax them in order to have sex again. Marek has said with time and patients I will be able to return to wearing jeans, and it won’t hurt (in fact as I write this I am wearing pants, slightly uncomfortable but not causing pain yay!). Marek said I should get to 90% and this is what I will aim for. I do get down sometimes at the fact I have to deal with this condition, but I must remind myself that some people are not as lucky as to get the treatment I have had so far and are still being told it is in their heads! Although I still have a daily pain level, and still suffer on and off with the bladder pain, just the fact that I can be intimate with my husband again means so, so much to both of us. I would never have come so far without the help and support of Marek and Sherie and I owe so much to the both of them.

It has now been almost a year since the whole thing started. I hope by this time next year I will have left this whole thing behind and be living a completely normal pain free life. Only time and hard work will tell. The difference is I now know I have support from these two fantastic inspirational people that actually understand, to help me get there. Thank you a thousand times over to both of you for getting me to this point. You have given me back my sanity.

I would also like to recommend a book to fellow sufferers ‘heal pelvic pain’ by Amy Stein. It reiterates everything Marek centers his treatment around and has also helped me get through the odd tough day since Adelaide treatment.  If anyone suffering wishes to contact me regarding anything to do with vulvodynia please ask Marek for my contact details. I know how awfully frustrating and emotionally draining this thing can be so would love to help others struggling with this condition. It can and it will get better, I promise.

Up until the age of 42, the only gynaecological issue  I had faced was aminor problem with thrush from time to time , which was easily resolved. In August 2003, a couple of months before my 42^nd birthday, I made a big life change and moved from Melbourne to country Victoria to live with my fiancé, who I was planning to marry. Being a light sleeper, I found it difficult to sleep with someone else night after night as I was easily disturbed and found myself getting run down very quickly. This led to me getting thrush again and although I took the pessary cream for it, this time it didn’t seem to clear up. I was put on oral medication for chronic candida, but things did not seem to get better. I could have sex but afterwards would feel burning, stinging and strange sensations which then over time escalated to not being able to have sex at all due to the pain. I was also having constant discomfort when sitting or wearing tight clothing.

I was referred to a gynaecologist in Wangaratta, who told me to go off the candida medication because although it had started as that it was no longer that and what I had was called Vulvodynia – a name given to a group of pain symptoms for which there was no other diagnosis. He wanted me to have a hysteroscopy which I did, but nothing unusual was found. He then told me that he couldn’t help me any further.

I was of course devastated by this news and fairly angry but determined to find an answer for myself, so I went back to the GP and asked for a referral to someone who knew more about these issues. He referred me to a specialist in Melbourne who he said specialised in vulva pain. This doctor put me on Endep, which did work for me. I gradually felt the pain symptoms lessening as I slowly increased the dosage and I found when I got up to 50 mg per night that I could have sex and everything felt normal again. I was going along quite fine for about three months and then the symptoms of pain returned again. When I told this doctor he said it was probably the candida interfering again and told me to take Diflucan one. This did work, but I found myself never being able to be stable as every few months I would have to take Diflucan again in increasing quantities. Things continued like this for a couple of years. When I explained to the specialist that I was still having to take Diflucan quite a lot, he mentioned that some of his patients had told him that Three Lac had helped them. So I ordered some Three Lacfrom the internet and found that after a month and a half things did get better, so I kept taking it. I continued along this way until I started to get a white discharge that persisted. By now it was 2008. I went to a Traditional Chinese Medicine specialist who gave me bitter herbal medicine to take three times a day. After three weeks of taking the medicine the discharge stopped. I found that the Chinese medicine did work for me and needed to continue to take it for a few years. I also had to be really strict with my diet and restrict sugary, fatty or processed carbohydrate foods.

In 2009, all of a sudden I went downhill and was back to feeling pain every time I tried to have sex and found I couldn’t have sex at all, even though I was still taking the Endep and other medications. This was around the time that my periods had stopped all together.

After five months on the waiting list, I finally got an appointment to see my Melboune specialist again. He said for people like me, the last option was to have a vestibulectomy but first I should try increasing the Endep maybe even up to 100mg and use topical anaesthetic if I wanted to have sex. I really wasn’t happy with any of his suggestions as I wanted to get off the Endep not increase it and didn’t like the sound of a vestibulectomy as he said it changed the anatomy of the vagina.

I asked him about Bio-feedback therapy that I had heard about and he said I could see Marek Jantos who came to Melbourne once a month. I did book in with Marek and started the dilator therapy but found that although I could insert the dilators okay, that was all I could do-any movement was painful and although I tried over several weeks, things did not improve-it was too irritating and distressing to continue. Marek took a reading using the vaginal probe and it showed that my muscles in the contracted state were strong but in what I felt was the relaxed state, still held tension.

Realizing that I was no longer happy about seeing my Melbourne gynaecologist as he had basically run out of options for me –except for the vestibulectomy which I did not wish to rush in to, I decided to ask about other gynaecologists interstate. That’s when I heard about Dr. Richard Reid in Sydney. I made an appointment to see him and my husband and I flew up to Sydney in late March 2010. Dr Reid tested my Bartholin glands by pressing on them. I felt intense pain at the touch. He said I would probably need an operation to remove my Bartholin Glands. This made sense to me as I could feel how painful they were. Unlike a vestibulectomy, this procedure would not alter me anatomically and I felt okay about the thought of it. Dr Reid also put me on oestrogen cream for the effects of diminishing hormones.

I decided to take the option to have my Bartholin Glands removed and had the surgery on 27^th July 2010 at Eastern Suburbs Private Hospital in Sydney. After four weeks of rest I returned to Dr Reid’s rooms to commence the second part of the treatment which was to recommence the dilator therapy.

I saw Marek again and began practising with the dilator at home twice a day. This time I could feel things were working as I no longer had interference from the painful Bartholin glands. After 11 days, I mentioned to my husband that things were feeling quite normal and he didn’t waste any time trying it out for real! I was quite amazed that I could have sex normally and without any pain. It was wonderful to be free of this affliction that had been with me for years.

Since then I have continued to be well, except for a bit of a setback where I had to take strong antibiotics for tonsillitis. I subsequently got thrush again and had to use Boric acid pessaries. I found these helped but I also had to continue being strict about what I ate, as I had before.

Now I have been able to wean myself off the Endep and the only things I need are the oestrogen cream and Three Lac. I find if I try to go off the Three Lac that itchiness returns so I quickly go back on it.

It is now 2 years after my surgery and I am thankful everyday for my health and for all the doctors that helped me along the way. Each one of them gave me a piece of the puzzle, like stepping stones across a river. I also had to use my own judgement in deciding which treatments to go with and keep persevering through the years. I am especially grateful to Marek and Dr Reid as they were the ones who helped me find the final solution to my problem, when I was beginning to wonder if I ever would. Without them I don’t know where I’d be. I am also extremely glad that my husband was able to stick by me through all this (we married in 2006) and at last we can enjoy our married life together.

It is not an experience I will ever forget and I hope that telling my story may help other women going through similar problems. I find I am much happier these days as I am not burdened down by a seemingly unsolvable and secret problem. During those hard times I had to still have faith and hope and not give up on myself. I had to keep believing that I would find an answer. For me, it definitely meant believing God would help me find the key to solving this puzzle. The feeling would pop into my head at times that “What’s lost will be found”. It did take a fairly long time but it did eventuate, making me thankful everyday for my good health.

Medically I’ve always had some aches and pains due to stomach problems from when I was born, I got my period at 10 and it was always irregular and a struggle. Regardless of all of these complaints, I was extremely active; I played 4 sports along with cross country running. When I was 12 I had my first laparoscopy, to find the root of terrible tummy pain and intolerances to everything. From the surgery, they found my right ovary was ‘overactive’ but no sign of a gastrological problem; regardless I was placed on Somac (an antacid) and had to write a food diary, writing what I ate and its effects for 8 months and was put on restrictive diets, to no effect.

The pain increased and when I was 14, I started passing out at school and no matter how much I exercised, put on weight with my lower abdomen protruding. I saw 5 doctors, had every test imaginable; with one doctor handing me a box of tissues and asking how my school and home life was and if I suffered abuse from my parents; I have the best and most supportive family imaginable, so you can understand why I felt insulted. Two days later my mum (a nurse) marched up to a doctor and got a referral for an ultrasound. They found my right ovarian tissue was entirely used up by a cyst of 1.2 litres of fluid, 1 kilo in weight and 21 cm in diameter. I had surgery 8 days later and am extremely fortunate that the mass was benign. The unfortunate bit is that the surgery cut through my lower abdominal muscles in the pelvic region and I was homebound for 10 weeks, after which, I was told that being 14 I would bounce back, and consequently had no rehabilitation.

I was confronted with the possibility of not having children and tried to re-establish friend groups at school. I didn’t notice that I had almost completely lost the ability for any exercise, but did notice a significant jump in pain levels. I have never been able to use tampons, and it would hurt if I had even a single pubic hair inside my vagina. I also had intense pain before, during and after bowel movements and would vomit following exercise.

When I was 18 I met my first boyfriend, and sex was like burning barbed wire. Gradually I came to the point where I didn’t want to try, as much as my boyfriend didn’t because of the fear of pain. I stayed with Him for 4 years during which I had 3 attempts at pap smears, for the first two I was crying and the doctor said I hadn’t been having sex for long enough. It was the third one that my luck changed, the doctor recognised the abnormal amounts of pain, and couldn’t even get the speculum in. She referred me to Dr Jillian Wionarski, whom I saw 3 weeks later; this was three years ago when I was 20.  Jillian told me about vulvodynia and vulvar vestibulitis syndrome. I had the first pap smear done and was started on thrush treatment, Endep and was referred to Janetta Web, a wonderful pelvic floor physiotherapist. The Endep didn’t start numbing out the pain until I got to 80 mg, and I kept going until 150 mg, If anyone is ever advised to go on Endep be warned, you’ll feel like a zombie- not able to focus, can’t feel very emotional (the bad or the good), I was constantly burning myself or getting chill blains, because I didn’t have full sensory perception in my hands, I couldn’t really go out with my friends, I lost a lot of my drive and it didn’t address the cause of the problem at all.

At this time I also started work with Janetta in using dilators to stretch out the vaginal muscles and was from there able to have penetrative sex, although it was still very painful.

It was during this time that I got treated like a drug seeker when going to get a script for my Endep, and found that a lot of doctors were really ignorant and unsupportive. I had one doctor tell met that if it is vestibulitis syndrome, that it must be in the ear and I had the wrong name for it! Needless to say I understand the constant struggle to get health professionals to listen and often its difficult to put up with their attitudes and opinions.

When I had finished with Janetta I could use size 5 dilators but still had the pain, I went back to Jillian and it was then she referred me to the care of Marek Jantos and Sherie Johns at their vulvodynia clinic. I say care because they really do! It was a relief to talk to people who knew more about my problem than I did, and actually gave me hope of a cure, not just a management plan and coping strategies.

I started seeing them just 6 months ago after pursuing the drug and solely physio route for 2 and half years. After just one appointment I realised I had stepped into a golden opportunity.

I started with the u-control and doing stretches every day, and at my next appointment I was thrilled that I was making headway just with relaxing and calming through the pain (which is bloody hard). I then had the first trigger point sessions, and I am not going to lie, they are painful, some more than others. I had three more monthly appointments (I live in Melbourne so that was the frequency I was available to do) and then I went to Adelaide for an intensive week. It was massage, stretching and trigger points, by the end of the week I was pretty tender. The next week I went for a follow up appointment. Everything had calmed down and I couldn’t feel anything apart from the one spot that gives me grief, which we then went over and then, the most awesome thing; I had NO pain, just the feeling of pressure, I couldn’t believe it, after all that time, after all the crying spells of feeling like I was getting nowhere, of being ‘the one’ with the medical problems, I could step outside of that role and be completely comfortably now. The best thing about the therapy, other than how lovely Marek and Sherie were, was I can identify which spots are flaring up, which muscle I aggravate when stressed or strained when sitting or working for too long. I can then use the techniques I have learnt, and deal with them myself. I feel totally in control of my own body; and not afraid of the pain coming back, because I will knock it on the head before it can becomes a problem.

Six months after first meeting Marek and Sherie my life is totally different. I have joined a tennis club, swim and go for hikes, I had pain free sex, can use tampons easily and I am now off the Endep. My advice is trust Marek and Sherie, it is non surgical and drug free, and if you dedicate yourself to the treatment it will pay off and then you can do low stress maintenance and can put the pain in the past where it belongs.Thank for reading, with huge thanks to Marek, Sherie, Jillian, Janetta and my wonderful family and friends.

Dr Marek Jantos has been invited to present at the 16th Biofeedback Foundation of Europe Meeting to be held in Rzeszow, Poland, September 11-15, 2012. Marek and Sherie will co-present a two day workshop on Female Sexual Pain Disorders and Marek will also present a keynote lecture. Workshop Title New Perspectives on Female Sexual Pain Lecture Role of EMG in Understanding Sexual Pain Disorders
Please join us for these and many other great presentations at this conference.

Dr Marek Jantos and Sherie Johns have been invited to present at The International Society for Pelviperineology Annual Scientific Meeting in Yokohama, Japan, October 22-25, 2012. Their presentations include a half day workshop, symposium and two lectures. An open invitation to Urologists, Gynaecologists and professionals with an interest in pelvic floor disorders.

Promoting a greater understanding of Female Sexual Pain Disorders

It was then, in year 11 that I was confronted with the unknown concept of vulvodynia. Not only had I never heard of this disease before, but soon learnt that most gynaecologists in fact know very little, to nothing, about the topic.
I am fortunate enough to be brought up in an exceptionally warm and loving environment. Living in the eastern suburbs of Sydney, my close-knit family is extremely open with each other. I am constantly surrounded by a group of girl friends that adore each other and are extremely loyal, and I am part of an extremely supportive Jewish community.

However being diagnosed with vulvodynia, I felt very much alone, very excluded. Besides my mother, I had no-one to speak to about this, no one to relate to.

At the time I was confronted by the secretive nature of this disease, as I was to some extent ashamed of it. On a social level, I was embarrassed of vulvodynia as the norm and expectation for teenagers is simply, “sex, drugs and rock n roll”. Sexually I saw myself as faulty and thus unable to live up to the social expectation of my age group and my circle of friends. Also, on a social level, my relationship with my boyfriend whom I was madly in love with, was strained. While he was extremely supportive and patient, I always felt like I was letting him down. The physical pain (especially during penetration) translated to psychological pain. I found myself being scared and afraid of my long-term boyfriend, whom I loved and cared for- and thus tensions were ultimately created in our relationship.

Furthermore, on a cultural level, I still question whether such a disease is accepted or in fact looked down upon. Vulvodynia became my little secret. I felt like a failure, as I am apart of the Jewish community in Sydney, and thus expected to achieve, strive and perform to my best. Being Jewish I was brought up with the mentality that sex is spiritual however only within marriage. Thus being a teenager I was forced to repress my sexual problems.

It was only when I found this bio-feed-back program online that I truly understood that many Jewish teenagers like myself suffer from the pain, discomfort and frustrations of vulvodynia. While I verbally still keep this disease to myself, I hope that with more scientific and gynaecological research such a disabling disease will soon be widely understood and accepted, in all families, romantic relationships, social groups and religions. I am pleased to say that with the help of Marek I am now completely pain free.

When I think back on my early twenties, it is all a bit of a blur of tension, worry and confusion as I vacillated between trying to ignore the pain and pretending nothing was wrong, to visiting countless doctors to find a solution. I went to approximately 15 medical professionals in search of answers. As a young woman, I was extremely stressed about the situation and hid it from my partner and family for quite a long time. I assumed I had somehow contracted a STD as that was all I had heard about in regards to problems in that area. I was tested for everything under the sun and the tests always came back negative, which was reassuring but also confusing as the pain continued. The pain became so bad that I could not wear jeans and would wince when I sat down. It either consumed all my attention or was always at the back of mind if I was attempting to concentrate on something else. My whole pelvic region became extremely sore and I experienced urinary tract infection symptoms as well.

Of course there were a number of sympathetic doctors who tried to help but I was also told by many to “just relax and it won’t hurt as there is nothing physically wrong with you” and one urologist said “you must have been sexually abused and I can’t help you unless you admit it to me”. I tried anti-depressants, numbing cream, long-term thrush treatments and steroid creams but nothing helped. I went to elaborate lengths to avoid sex with my boyfriend and all of this stress eventually took its toll and the relationship ended. I have always been a little socially cautious because I have hyperhydrosis (excessive sweating due to an overactive sympathetic nervous system) but in general I was a confident and sociable young woman who appeared on the outside to be “normal” but inside I was falling apart and became teary and withdrawn at home and I often cried myself to sleep.

I became obsessive about my personal appearance as an attempt to “mask” what I thought was a deeply flawed individual. I often felt like I was living a lie as I went about my everyday life. I developed irritable bowel syndrome and began having panic attacks. When I look back on this time of my life I am amazed that I managed to graduate with a teaching degree, maintain my friendships and work part-time as in private I was in a highly stressed state all of the time.

A doctor recommended I see a dermatologist to see if they could diagnose a skin condition as the opening to my vagina often did look a little red and inflamed. The dermatologist couldn’t find anything wrong but she mentioned Marek Jantos who was a specialist in the area of Vulvodynia. I contacted him and commenced treatment. The diagnosis of my pain being related to muscular tension made complete sense to me and I began to feel hope that I could at least manage this problem and get better. I lost contact with Marek as I began to feel better, the pain lessened and became more manageable on a day to day basis. I combined the exercises with other minor treatment strategies such as bicarb soda baths, cotton underwear, loose clothing and barrier cream and when I met my husband we were able to have relatively pain-free sex.

As time wore on and I became complacent with my exercises the pain began to return and has recently become so bad that sex is impossible although I feel relatively comfortable if sex is not had. However, my earlier experience with the condition has changed my personality and I am now easily stressed and prone to anxiety. My whole body is often sore and exhausted as I am in a constant state of tension. My leg muscles, neck and shoulders in particular often ache with tension and are shaky.

I was relieved to learn that I would need IVF if I wanted to have a child as the thought of conceiving one naturally seemed impossible to me. I had a baby girl in 2009 and chose a caesarean birth as I feared any activity in that region would be risky to my new found relatively pain-less existence. Pain associated with sex has taken a massive toll on my libido and I have become very disinterested in sexual activity because I have such negative associations with it. After much discussion with my husband (who is supportive but a sex-free marriage is of course not his or my preferred way to live) I decided to contact Marek again. I am so glad I did. He explained what we would need to do and that I would benefit from intensive treatment at his Adelaide clinic.

I have just returned from a follow up session with Marek. Now, a week after returning home from my intensive training in Adelaide I was very pleased to have significantly reduced sensitivity. This weekend, I was able to achieve pain-free sexual intercourse with my husband for the first time in a very long time. I feel very positive about the future, and know that with regular exercises and maintenance techniques, I have a much fuller and comfortable life ahead of me.

I have found Marek and his colleague Sherie to be absolutely wonderful in their professionalism, knowledge and bed-side manner. I can’t thank them enough for all the work they have done with me as it has given me a new lease on life.

I tried to find help from numerous professionals in that first year of marriage, including a number of GP’s who diagnosed vaginismus, gynaecologists who screened me repeatedly for STD’s and suggested that I might be allergic to my husband, and counsellors who took me through various psychological techniques to get over some childhood sexual abuse. I didn’t find any relief to the physical pain, and our relationship went through massive lows resulting in blow-ups where I would resolve to make a bigger effort towards our love life and pleasing my partner. At times my husband felt like it was all his fault, that he wasn’t able to please me and that I wasn’t attracted to him – which I could understand as I was not engaging in normal sexual activity unless I made a conscious effort to and even then was not able to be aroused. Sometimes we sadly joked that we had a better love life before we were married and attempted intercourse – the pleasure of slowly removing boundaries prior to our wedding night did not initiate any pain and was the only time in my life that I had felt real sexual desire.

Years passed, and the responses from various specialists I visited were more discouraging than helpful, resulting in avoidance and trying to ignore the problem. It was a miracle that I feel pregnant a number of years after being married, and gave birth to a beautiful baby. However the birth was instrumental and physically traumatic leaving significant scarring and bladder pain. Painful intercourse worsened after this experience, and my GP just advised me to tell my husband to “stay away” for at least a year. Some time later I shared what was going on with a girlfriend who insisted that I see another gynaecologist to try to get it resolved. He suspected endometriosis and performed a laparoscopy and removed adhesions, which provided some relief to the deeper pelvic pain.

However the external burning, bladder pain and lack of arousal continued, and again it felt almost miraculous that I fell pregnant with my second child. I gave birth to her without interventions but found the final part of the labour excruciating as I struggled to relax my pelvic floor and allow her to come out. I had a perineal tear that was poorly managed, and the dyspareunia continued even worse than it had been before. Finally I plucked up the courage to mention it to another GP, who suggested sex therapy and a visit to another gynaecologist. This gynaecologist prescribed and antidepressant, steroid cream and physiotherapy. As I left the office I was beside myself, I did not understand the therapy she had prescribed and felt degraded and misunderstood, so went back to the GP who referred me to yet another gynaecologist. I was too traumatised by these events to proceed with the physiotherapy, but decided to try the antidepressant which was a disaster – I walked around like a Zombie for the short time I took it. I had all but given up on ever finding a solution and felt myself becoming depressed and overly focused on the issue. One last-ditch attempt to find answers resulted in coming across Marek Jantos’ website – which was the beginning of my journey to both physical and psychological healing.

I read through some testimonials and was flooded with tears of relief that there were other women with symptoms and experiences similar to mine. I sent him an email hoping for a response, which was received within just a few days. I couldn’t believe that there was a real person at the other end – and was willing to pay whatever it cost to see him and even travel to the other side of the world if necessary.

The treatment commenced with a thorough explanation and introduction to treatment, and I was surprised and relieved that Marek was more interested in the fact that I had found using tampons painful as a teenager than about asking details of the childhood sexual abuse. It was so nice to have him provide a physical explanation rather than a psychological classification that had in the past made me feel that I was somehow to blame. I was also surprised at the level of ease I had discussing such personal issues with him, as in the past I had the sense that the doctors and therapists I had spoken to appeared uncomfortable and did not really want to address the issues which made me feel even worse.

As treatment progressed, I began to see significant results, and was excited to see a reduction in overall pain levels, particularly the bladder pain and urethral sensitivity. Marek made me understand that resolving this problem required a holistic approach, including reducing stress levels and changing the way I naturally responded to stress. At one point in time I set an alarm on my phone that alerted me every few minutes to do a muscle scan to remind me to stop bracing the pelvic floor, which was one of the most powerful exercises in retraining my tension patterns.

Towards the end of my treatment I had a week of intensive therapy in Adelaide, and on conclusion I estimated that the pain was was 95% improved, and could achieve penetration without discomfort. A small amount of focal point pain remains, but I am so positive with my progress thus far I am sure it will resolve with some more time and patience. I am just so grateful for Marek’s dedication to this poorly understood area of female health and his ever kind, professional approach. I hope that his approach will become more widely accepted and well known, so that many more women can achieve the phenomenal relief that I have found and avoid the amount of searching and trauma that misdiagnosis and mismanagement causes.

I walked out of Dr. Jantos’ office, smiling and very happy with my husband beside me. I saw a young woman sitting at the reception area, eyes full of tears and face turned away. My heart went out to her and I wanted to comfort her. She was exactly where I was more than 18 years ago.

The biggest difference was that this woman was about to see the kind Dr. Jantos, whereas 18 years ago when I was seeking professional help I was practically violated without any explanation. I was asked to get on to the examination table/bed where doctor proceeded to insert her fingers while I was screaming with pain. She said that everything was all right and referred me to a psychiatrist. The so-called psychiatrist tried to convince me that I was homosexual (which I knew I wasn’t). These people only made me doubt myself, made me think that my pain must be in my head and etc.

Long story short, after going through 4 years of depression while seeing the professionals, the day arrived where I decide enough was enough. I overcame depression all by myself as I started to trust and believe in myself again and led a normal life except for my sexual life. Sometimes I felt as though my whole life was a lie. My husband stood by me and supported me the best he could, even though eventually I stopped getting any intimacy from him. I settled for less as I could not give this very important part of myself to him and was not able to satisfy my husband or myself sexually. All those years I felt guilty that I could not share a child with him. And I silently suffered whenever my husband shared intimacy with a woman even though it may have being a very innocent gesture like touching hands, hugging etc as my husband had stopped sharing those simple gestures with myself.

About 8 months ago I finally got the courage to talk to my GP who I have seen for the last 10 years, a very understanding, and modern thinking one. This GP referred me to Dr. Janet Hall, who after 3 sessions with me referred me to Dr. Marek Jantos. Within 3 months of seeing Marek, for the first time in my life I was able to have intercourse with my husband and became sexually active at 43 years of age. Three months ago I could not even insert my own little finger. Thanks to Marek my husband and I were able consummate our marriage after 18 years and 8 months of married life. What a day that was!

Marek patiently help me realise that I had everything I needed to help myself right inside me. He taught me to live in the moment and to let go and relax, relax, relax. He helped me to trust and believe in myself and by doing so gave me hope as to what I could achieve. Marek brought out these qualities I had hidden deep inside myself. When I read all the other case studies I realised that many women have gone through similar situations before meeting Marek. This increased my confidence in my own and other women’s fighting spirit and self-knowing. We know our bodies and we all know that it isn’t in our heads. Thank goodness for Dr. Marek Jantos. I have fulfilled my wish of having intercourse and a sexual life with my husband thanks to Marek. He has even given me hope that I will be able to have my own child. I cannot thank him enough for all the help that he gave me. And I cannot stop praising his name, Marek helped me overcome pain and live my life as it is, without deception and lies which no-one else could do for over 18 years.

M

We have been unable to consummate our marriage of 18 years due to pain that my wife encountered. We have a unique relationship where sex wasn’t the ultimate experience in forming the foundations of our marriage. Even though we both wanted it to be solved we made no progress. We were always able to ignore it and enjoyed a very happy and successful marriage. However, now I realise that we coped by concentrating on other aspects of the life like education, careers and friends rather than solving our problem.

After our first encounter of painful sex we went to see our GP. She was from the same ‘cultural’ background as us. She prescribed my wife some relaxant tablets and virtually asked me to have sex with my wife after she goes to ‘sleep’. I totally refused to do that as it felt like I was raping her.

After few years we went to see another GP and he tried to examine my wife while she was screaming with pain. It also didn’t work and both of us lost the trust with General Practitioners. Again after few months we went to see a doctor at a family planning clinic. She inserted a dilator to my wife’s vagina while she was screaming and asked me to have a look and said ‘see there is nothing wrong with her opening’ and said we should be able to have intercourse.

All these episodes made us unable to trust GPs anymore. Meantime we worked on building a new house and were very successful in our careers. By this time all our friends had children and they started to tease us because we didn’t, and even our relatives started treating us differently. After moving to the new house we went to see a new GP. He was the same age as we were and was open to discuss any problems. However, it took us another 10 years to discuss our sexual problem with him. This particular GP referred us to a top psychologist and sex therapist in Melbourne. After few visit with her she referred us to Marek Jantos.

In our first appointment Marek he explained his approach to vulvadynia in detail and referred us to a gynaecologist to resolve some skin irritation before beginning therapy. My wife saw Marek a few times in Melbourne where she was taught how to do some relaxing exercises. She then progressed to intensive therapy in Adelaide, and after two days of treatment he asked us to attempt full intercourse. That night we were able consummate after 18 years of marriage.

Although our marriage was happy and successful I had a very difficult task to convince my wife that I was not having affairs with other women. Whenever I was close to another woman she would accuse me of having affairs. When she saw me being affectionate to others she thought that I was getting my satisfaction from outside. I now realised that I used to shutdown/turn off the sex part of my brain. I lost libido. I was not intimate with my wife. I concentrated most of the time on my studies, hobbies and on my professional career.

None of the GPs were able to diagnose this condition. They always thought that this problem was in my wife’s head. Only now do we realise how much it has affected our marriage. Thanks to Marek’s vast knowledge and experience in this issue we have been able to resolve this issue. He is a very calm and collected professional and it’s easy to openly discuss your problems with him.

I have been always proud of my wife’s achievements. However, the efforts she put forward to overcome this condition made me realise that how much I love her. She did it for both of us. We proved that a marriage can survive without sex but with commitment, love and care for each other. Yes, you will encounter disagreements and accusations. You can survive if you are faithful, care and love each other.

As a partner of a vulvodynia sufferer I can assure you that there is hope. We were able to overcome it with the help of Marek. I sincerely hope that people who need help will get it from this remarkable person. After 18 years of sexless marriage we did it so any one can do it.

I am 23 years old and have been consciously dealing with vulvodynia for a couple of years, since getting married. I was fortunate that my sister was diagnosed with vulvodynia several years before me, so at least I had an idea of what was going on. This didn’t make it any easier to deal with though, I couldn’t believe that it was happening to me as well, and assumed for quite a while that I really was making it up, just copying my sister. It took me a while to go to doctors and gynecologists, and when I finally did they dismissed me with a very cavalier ‘The pain will go away, just keep having sex’. We basically stopped looking for answers after that. My mum stumbled onto Marek’s website through sheer desperation for my sister and myself. I visited Marek with little confidence, but after a few months of biofeedback exercises and stretching I came back with my sister in tow for a week of intensive therapy. The week was very hard physically and emotionally, but very successful. This time was made a lot more comfortable due to the fact that Marek had a fantastic girl working with him, Sherie Johns. The pair of them worked in perfect unison to complete the treatment of myself and my sister in a supportive, caring and understanding manner. I will forever be grateful and would recommend any woman out there to these two amazing people.

I am 26 years old. I have been aware of my chronic pain problem for just over three years – ever since I got married. My very understanding Mother dragged a very reluctant me along to a Gynecologist who diagnosed me with Vulvodynia a year after my marriage. Although she was helpful and I was thankful that she suggested lots of different solutions, at the time it was too much for me to deal with and I played the whole Ostrich-Head-In-The-Sand trick from then on. I also found myself horrified at some of the suggestions i.e. “its really just in your head because your brain is telling you that it hurts when it doesn’t.” This gynae also said one of the ways of reducing the pain was to have surgery and cut all the nerves. As you can imagine I never went back. So I continued on not having sex. It wasn’t until my younger sister got married that we realized there really was a problem. I have to say that, very selfishly, I was relieved she had a problem too. It made me feel that much less of a freak. It sounds horrendous and I would never wish this on anyone but I was glad someone else understood exactly what I was going through. My sister however, wasn’t going to settle for being told there was nothing wrong. She tried out doctor after doctor until she was nearly at her wits end. We had many tearful phone calls to each other wondering what we were going to do. We could hardly expect our husbands to stick around for a lifetime of no sex now could we. When our Mum found Marek’s website I was dubious. I had reached the stage where I thought nothing could be done so I might as well just wait for my husband to leave me. However, in the mean time Rachael had begun treatment with Marek and was so positive about her experiences that I started to consider it myself. Finally, she gently talked me into coming down and having an intensive week with him. I decided it was worth a try. It was a very full-on week but so very worthwhile. Marek is a wonderfully gentle and sensitive man, and to help him out he had a wonderful girl assisting him called Sherie Johns. Knowing that Sherie has gone through this same situation made all the difference for me. Between them both I believe I made progress and I can honestly say I know there will be a light at the end of the tunnel. Its up to me now to continue doing the work to get there. I would highly recommend both of these terrific people to any woman suffering out there – they know what they’re on about and with Sherie there it’s like Marek has a secret weapon – one who knows exactly what you’re going through.