Returning Member

Hi all,

I joined this forum a few years ago but left after I found myself getting a little too caught up. I think a lot of us can fall into the trap of seeing others find a cure & then getting hopeful that their cure will be ours but I think I started trying too many things all at the same time. Anyway I have decided to come back , as I think it will help me to talk about how it's making me feel.

I have had vulvodynia for 7 yews now. It has been a long, frustrating journey. There are a few triggers that I think may have started this. I think this started in a very typical fashion, I had a very strongly scented bath one night, and think it caused me to develop thrush. The I visited the dr to get some thrush treatments, they didn't help, I visited the dr again, and have to say I think she was a bit abusive. She was running late, and I was going to be late for work, so I acted a bit annoyed when she called me in: I told her off, so when she did a spectrum exam, she was a bit rough. Now you'll all know that when you have a spetrum exam, the dr is usually quite delicate, but this dr inserted the spectrum, opened it until I gasped, then opened it further. She then proceeded to twist it really agressively, until it brought tears to my eyes. I told her in a pained voice how painful it was, but she continued to twist. It was a horrible experience. Part of me has always wondered if that was the clincher that made me develop full blown vulvodynia...

It took me around a year to be seen by a specialist, she diagnosed vulvodynia and put me on amitriptyline, local anaesthetic, and change to toiletries. I saw her around 3 times before moving for work. When I moved, the new area I lived in didn't have a vulval clinic, so the dr passed me from pillar to post. I sawa gynaecologist, who didn't believe in Vulvodynia. She tried estrogen, thrush treatment. She did a biopsy and diagnosed 'contact allergic dermatitis'. I then asked to see a dermatologist to find out what I was allergic to. The dermatologist scoffed 'a biopsy can say dermatitis, it can't say it's an allergic reaction', but we ran an allergy test and tried steroid creams, but he said the pain I feel could not be dermatitis pain, so he referred me on to a leading specialist in london. She was fab - after 3 years of being passed about, sheconfirmed the original diagnosis, although said it was vestibulodynia. She gave an action plan, putting me back on steroid creams, local anaesthetic, amitripyline, and basically reassured me that we'd find something that could work.

She suggested I see a pain clinic, and that's where I am now. The pain clinic is trying me on some other anti-trycyclic anti-depressants, and also wants me to see a psychiatrist. The theory is that it can help to talk about our pain.

The pain clinic feels the pain might be linked to abuse I suffered as a child - when I was , a girl in our street (around 4-5y.o.) was sexually abusing other kids on the street. My sister came forward about it, and I was there when she met with the social services. When she was telling them about the stuff this girl did to her, I realised she had been doing the same stuff to me, but I hadn't realised it was bad. I don't remember anything she did now, I was too young at the time, but I do remember it happened. The thing is, I know I also made up some of the stuff she did, it was merely saying that some if the worse stuff she had done to my sister, she had also done to me. The best way to describe it is that she was grooming us, and she was just further along the path with my sister.

My parents took us on holiday, and when we came back, this girls parents had told the whole neighbourhood that my sister and I were the abusers, and suddenly we were ostracised. Not long after though, other kids in the street came forward to say this girl had abused them too, but my sister and I still found kids were wondering why 5 minutes earlier, my sister and I were so bad, and those friendships never quite recovered.

I don't think this is the cause, like I say, I don't remember it, but the specialist does want to investigate it with a psychiatrist.

The thing that I find hard is that I'm now at an age where I want to think about kids and marriage, but I can't until I'm better. I can't manage sex at all.... I've been with my OH for 8 years, and we are getting lots of questions about when to expect wedding bells and hints that 'my clock is ticking' (I'm 27!). It just makes me feel awkward having to evade these questions... I'm half tempted to say I can't have kids because of a medical condition, and we're waiting until I'm better before deciding whether yo wed (so I don't tie my OH to a childless future).

Sorry that did end up being a bit long... I thought it would be good to go into full detail, as my theory is that if it's emotional causes, and I put them out there, it might start my brain healing process...

I should have said my symptoms haven't improved, but I hope that might change!