Helen’s story

This is the story of my struggle with Vulvodynia over a number of years and how I ultimately was able to obtain a positive outcome through persevering with this complex problem.

Up until the age of 42, the only gynaecological issue I had faced was a minor problem with thrush from time to time , which was easily resolved. In August 2003, a couple of months before my 42nd 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. He explained I no longer had thrush but rather 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. 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 Lac from 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 Melbourne 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 a psychologist/physiologist who came to Melbourne once a month. I did book in with him 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. The therapist 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 27th 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 the therapist 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 who 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 the doctors who helped me as they were the ones who found 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.

Note from Bettina – I’m delighted Helen found solutions to her complex problem but I do wonder whether a physiotherapy specializing in the pelvic muscles might have been helpful in removing tension and relaxing those muscles. Physiotherapists are doing wonderful work with women with pelvic pain – readers should contact me for referrals.