T.W. Age 21 – Victoria
I am a 23 year old, biomedical science student and I would like to share my story of vulvodynia with others.
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.