My story and cure

Hi everyone, I really sympathise with everyone going through the various stages of Vulvodynia, believe me I know how you feel! I thought I'd share my story so that readers know there is hope and that finding a cure is possible, despite how hopeless the situation can seem. I'm going to try and be quite descriptive with my symptoms, as I found reading others descriptions when I realised I had the condition helped me diagnose my symptoms fully, and aid the cure process.

I'm from Dublin in Ireland and have been pain free for almost three years. I'm 26, and I first started seeing symptoms when I was 22, and the pain began as a result of what I thought was a yeast infection (I'm prone to getting them). The pain was sharp, throbbing and consistent in one specific area (just outside the entrance to the vagina, and I also experienced some internal pain as well), I had never been sexually active so the pain wasn't caused from anything like that, but there was also some external symptoms in the form of swelling (but no itchiness). The pain was unprovoked, though if pressure was applied to that particular area, it would also become more intense.

Long story short, I saw several GPs for about two months, and all prescribed me with the same topical creams and antibiotics one would use to treat a yeast or bacterial infection, and nothing worked. The pain remained the same day in, day out and I slowly sunk into depression and started to spend all say in bed, refusing to eat etc,, I was in a bad way. It's worth noting here that I've had Mild Cerebral Palsy, my whole life, though my physiotherapist couldn't find anything to tie up the two. My pelvic muscles are also in really good shape (so I'm told!), so doing this form of excersize didn't help me in any way either. I eventually went to a swiftcare health clinic when I couldn't take any more, and they found an ulcer which, despite careful self - examination and visiting quite a few GPs, we all seemed to miss! I was then referred to a Gyn who did a few tests, and as soon as I mentioned my symptoms, he told me about Vulvodynia.

Unfortunately, he doesn't practice anymore, but it can't tell you how much it helped that right from the get go, he was so supportive of me. I went under general anaesthetic twice so that he could take a closer look at things (I can only stretch so far when awake due to the CP), and he did a biopsy and not only removed the huge ulcer, but discovered that this had pretty much been blocking the entire entrance to the vagina, causing blockages of discharge etc.. I found it odd that I didn't notice the ulcer, but because of my narrowness and the fact that the ulcer was difficult to see, he said I never would have been able to myself. Anyway, you can imagine my happiness that there was a reason for my sharp, throbbing external pain, but even after the ulcer was gone (and it took about 6 weeks for the stitches to heal, which was very painful in itself), the internal pain remained.

I began to get depressed again, because it was the daily, internal pain that bothered me the most. In tears, I returned to my gyn and we decided that he should take a look internally as well. When I went under again, my gyn concluded that the entire area (internally and externally), was hyper-sensitive, thus causing the internal nerve pain. So he prescribed me a six month dose of Gabapentin - 350mg, 3 times a day. During this time, I did all the usual things like only wearing loose fitting clothes and cotton underwear, and avoiding perfumed products and I didn't even think about sex - I couldn't until the pain was resolved. What helped me was the reassurance of my gyn: "if this doesn't work," he said, "we'll keep going until we find something that does." So, girls if you're not happy with your gyn, try looking for another who'll offer more support. And after about 6 months on the tablets three times a day, the pain stopped as quickly as it had started and I haven't had to take a tablet since, and that was three years ago. I do think my pain was amplified due to the fact that I couldn't focus on anything else (and how are you meant to stop this because of where the pain is?!), but I knew I had to try, so I stopped reading about the pain etc and as I continued to take the tablets and felt the pain lesson, I decided to try and change my outlook and think positively about my pain: I was going to defeat this, it was not going to consume me anymore, the way it had for over 18 months. And I took more tablets and after two years, the pain was just not there anymore and I weened off the pills.

It was a long, painful and stressful journey, but I found my cure, despite all the hard work and tears in between. Even to this day, I'm conscious that the pain could rear it's ugly head at any time, so I always try and keep a prescription on standby in case I need to start a dose of them again. I'm not hugely sexually active by any means as a result of all this (I'm conscious that given my history, sexual activity will trigger the internal pain so I approach this side of things a little warily than I might have if this hadn't happened unfortunately), but when I did attempt it when the Vulvodynia pain subsided, it wasn't hugely uncomfortable at all (it was for other reasons, but this had nothing to do with my Vulvodynia pain), and now it's (thankfully) virtually pain free - yay! Sorry about the length, but I hope this will encourage others to keep looking for a solution and know that it is possible for the pain to subside and for your normal life to resume again. I wasn't prepared to give my life up to this pain, I was going to find a cure, and if it ever starts up again ( as I'm fully aware it might), I'll find one again.

Good luck everyone, I know it's tough, but keep trying to get through it xxxxxx

THANK YOU FOR POSTING THIS STORY. GOD BLESS YOU AND ALL THERE IS, I am also on 50 mg amitriptyline and it works for my nerve pain, I am positive if I add more meds I will be able to live a better life

Thanks Mary Jane, I hope it works for you. It's very much trial and error when it comes to defeating Vulvodynia, and about finding a combination that works for you. The problem I had with this was the pain that your left in up to this point! I know just how awful it can be and reading stories that had positive outcomes helped me to stay sane and gave me hope during the worst of days. This forum is fantastic; having support like this is so vital. Before I found my gyn, I was very much coping with it alone, which was one of the toughest parts.