From a concerned husband

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot of you can vouch for this too, but she’s had so many incorrect diagnoses, and too much poor advice (in the form of prescription medications which ended up doing more harm than good) to keep count. Evey time we think we’re getting somewhere the doctors either run out of ideas or just fob her off with thrush treatment (which better consultants have told
us may have led to other problems).

She doesn’t like to talk about her problem to anyone, which is why I’m asking anonymously on here for help. I don’t know if I’m breaking any rules by being here as a man (I apologise if I am), but I just don’t know what to do any more.

My wife is incredible, that she is able to function day to day is a testament to her strength but I know how much she suffers. I really want to help her.

Thank you for reading my introduction, and genuinely sorry if I’ve caused any offence or broken any policies with my post.

Hi,

Certainly no rules broken, and I admire that you care so much to reach out!

All of us are so different, which makes vulva pain so hard to figure out, but if you could answer a few questions, it may help some of us tell you what's worked for us if we've had similar symptoms.

1. When did your wife's pain start? Can she pinpoint when it started getting bad (e.g. after a UTI, yeast infection, other infection, trauma to her back/hip/tailbone, pregnancy, using hormonal birth control, constipation, douching, etc.)?

2. What does her pain feel like? (e.g. burning, itching, muscle spasm/aches, shooting pain, pin pricks, prickly, hot, raw, dry, tight, etc.)

3. Where is her pain located? (e.g. vaginal opening, clitoris, inside the vagina, urethra, etc.)

4. Is her pain constant or only when provoked (e.g. sex, inserting tampon, touch, while urinating or having a bowel movement, sitting/standing too long, etc.)?

5. I assume all tests are negative currently (e.g. BV, yeast, STDs, UTI, lichen sclerosis, etc.)?

6. What has she tried and has any of it reduced her pain? (e.g. antibiotics, diflucan, yeast creams, boric acid, gabapentin pill or cream, antidepressants, estrogen, etc.)

7. What treatment is she using now, even if it's just soothing techniques she's doing at home (e.g. ice packs, baths, lidocaine, etc.)?

8. Since the pain started, how long has she gone without doing anything to her vulva/vagina and being as gentle as possible (e.g. absolutely no creams, antibiotics, boric acid, soaps, douches, washing, kegels, keeping shampoo/lotion/laundry detergent/fabric softener/ultra plush or scented toilet paper off her vulva, etc.)?

I know this is a lot, but it will help us know if we have anything new to offer. Heck, I even read a sufferer's blog where she found the cause was unfiltered water at her home, and when she went on vacation and drank only purified bottle water she was symptom free. So there is a lot to learn from everyone's experience.

If you or your wife would prefer to send me a message privately, please feel free to do so. I'm happy to listen and provide support in any way I can.

Best of luck!

I'm in a similar situation too. We could discuss in pm.

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) used sparingly every night only before going to bed, and not to wash to much off in the shower in the morning. I did this for about 3 months, took the Nortriptyline at night before bed and used the ointment at night before bed. This worked, why, because the Nortriptyline, is for pain, and makes the brain stop thinking about the pain, as it has now become persistent pain, and the ointment, soothes the skin and it has properties in it to help heal the skin. Anyway I stopped posting on here as I was getting abused by people that were not able to get a hold of the medications in other parts of the world. So if anyone is interested in this information, and if you can get these medications, then it will cure you, you will need to do your pelvic floor exercises after you are cured to help strengthen the muscles again, but I hope that this information can help some people out there, as I know how extremely excruciating this problem is, it bought me to tears, and no sleep and could hardly sit, wanted to go to the hospital so many times, I nearly went crazy with the pain, and of course no intercourse what so ever, could barely even wee without pain, had to wear loose clothes, not tight jeans what so ever.

So I wish everyone all the best, please dont write back nasty things to me, simply because the medication might not be available in your country, perhaps look for medication that are of a similar nature that will help you. All the best everyone! Smile

Thank you for sharing!! You can't please everyone and it takes courage to share, so Thank you!