Vulvadynia

[64andcruising]

My understanding is that ‘vulvadynia’ simply means vulval pain and therefore covers many problems. My problem is constant [8 years now] burning on the labia majora and a tendency for the skin above the clitoris on the outer bit to actually split. It is so painful. I’ve seen specialist vulval dermatologists but have only had strong antifungal treatments in case it was thrush [I’ve had thrush years ago andthis is nothing like thrush] and a low dose of antidepressant which is meant to block the pain. It doesn’t. I’m at my wits end. I’m on HRT, testosterone and oestrogen but that has had no effect in terms of toughening up my skin or thickening it. Does anyone else have this and does anyone have any suggestions for treatment?

I sympathise so much.
I have been celebate for more years than l care to remember.
I think I've tried everything offered to me.
Estrogen cream twice a week.
I use vagisil with lidocaine.
Cold compresses ( muslin cloths run under cold tap).
Donut ring .
I use petroleum jelly as a barrier if l go swimming.
I only wash my vulva/ vagina part with warm water ( no soap or anything ( l use soap on groin area). I only shower ( don't have a bath).
I use non bio washing gel.
Ive tried antihistamines ( didnt work).
I also am soon seeing a urogynocologist for my vaginal prolapse bladder.. so I'm hoping she can offer some more help.
I'm not sure what more l can say.

From personal experience I would recommend using Yes lubricant daily as a barrier cream, a little goes a long way and provides lasting comfort from persistent soreness and that associated dry feeling. You can buy it online and it’s reassuring to read their website and the reasons behind it being created.

I would recommend washing only with dermol or another soap substitute and making sure your shampoo etc cannot come into contact with intimate areas when rinsed.

Wash underwear in washing powder only at a high temperature, no fabric conditioner and rinse twice.

Limit wearing tight trousers and any activity that causes friction such as running.

The above is general maintenance advice and you are probably already doing this and more as you have been surviving this pain for 8 years.

I would consider seeing another vulva dermatologist. I had a biopsy on my vulva skin which came back negative and therefore confirmed I had nerve pain. This was when I was finally able to get the correct treatment.

Things that have worked for me are gabapentin then switching to pregablin, concurrent use of nortriptyline, citralopram for the associated anxiety, CBT, yoga, acupuncture and acceptance.

Acceptance that this is the situation as things currently stand but not acceptance that this is the way things will always be.

It’s a chronic condition and has got easier to accept and manage over time. I can now walk for miles even if I can’t run, I am much stronger through yoga even if I can’t go swimming, I can curl up with my children and read a book / watch a film even if I can’t cycle with them. And that’s okay. I try and remember to be grateful for what I do have and what I can do, rather than what I can’t.

Keep going OP, it took a long time to get my diagnosis. No one believed me. I spoke with NPs, numerous GPs, various gynaecologists until I met an amazing dermatologist who started to turn things around for me. You shouldn't have to push for answers but do keep pushing - this is the first time I have spoken about my condition as I couldn’t read your message and not respond. I understand how hard it is to get the correct care and treatment but there are people out there who can help you.

Thank you both for the advice and empathy. I find it most infuriating that so many women have ‘vulvadynia’ but no cures seem to be available there or even ongoing research. Vulvadynia is as useful a diagnosis as ‘headache’; brain tumour, aneurism or hangover? There are a lot of underlying possibilities. I’ve ordered some Yes moisturiser, I will ditch the fabric conditioner as well. I’m losing weight which should help. I’ve made a note of the medications mentioned above and will ask at my next vulval dermatologist appointment about their efficacy and if she can recommend/prescribe. Fingers crossed.

Did you have any improvement @64andcruising ?
just wanted to know if you had checked your bacteria levels both in urine and vagina? As an abundance of bad bacteria can cause vulva pain and also if you have too much good bacteria in the vagina…. There are treatments for both vagina issues …..hope you doing ok

As you can see by my username, I've had issues. I now use a Vagifem pessary every night and it's taken away about 80% of the pain. Sex is out of the question, I can't wear trousers or tights unless they have a gusset, but I can live my life, work etc. which I struggled to do before.

I was diagnosed with Vulvodynia about 6 months ago after suffering for about a year. I paid to see a private Gynae, she diagnosed Lichen Sclerosis and said the Vulvodynia was secondary to the Lichen. She started me on a steroid cream for the Lichen and amytrptilline to reset the nerves. But most importantly she also referred me to a women's health physio who has been immensely helpful. Of course I've had to pay for all this (such is the state of the NHS), but 6 months down the line there has been great improvement. You say you've been seeing a dermatologist, have you actually seen a Gynae? And do consider seeing a women's Health physio.