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» Had this for 5 years, looking for people who understand
Sun Nov 18, 2018 11:22 pm by srbry

» IMPORTANT FOR UK SUFFERERS
Sun Nov 18, 2018 8:42 pm by srbry

» Found relief after more than 15 years of pain!
Thu Oct 25, 2018 4:29 pm by AlwaysInPain

» Back pain, burning feet and vulvodynia....all related?
Sat Oct 20, 2018 3:50 am by lindsey_taylor

» Anyone have pain with urination?
Thu Oct 18, 2018 9:55 am by Gaby

» New member - just looking for feedback
Mon Oct 15, 2018 5:40 pm by mertzwl

» Will I ever be able to wear jeans?
Sun Oct 14, 2018 4:14 pm by Npage14

» Amitriptyline Success and new-found love
Thu Oct 11, 2018 8:29 pm by megaanx

» Diagnosed recently, looking for advice
Wed Oct 10, 2018 2:30 pm by wuhujen

Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 9:46 pm by blackberrie

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

Comments: 3

Anyone have pain with urination?

Tue Oct 16, 2018 2:35 pm by mertzwl

Hi everyone - I can't believe I've been dealing with this for almost 10 years and an appointment scheduler at a urogyn office is the one to suggest I look into vulvodynia. Honestly, I don't care, I just thankful I might have an answer.

I have pain in one specific spot right around the urethral opening so it always coincides with urinating (it's not a uti). Does anyone else deal with pain …

Comments: 6

Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

Comments: 4

From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

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 …

Comments: 4

6 year sufferer but I’ve found some hope

Wed Oct 10, 2018 1:33 am by Npage14

Hey, ladies! I’m new to this support group, I’ve thought about doing something like this for a while so I wanted to try this out! I’ve had vulvodynia for 6 years now, I am self diagnosed. I’m 20 now and the pain started when I had my first encounter with sexual contact when I was 14(I still remained a virgin though it was fingering). For a couple years the pain was so bad I could hardly …

Comments: 0

Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

Comments: 5

Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

Comments: 1

Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 3

I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

Comments: 6


From a concerned husband

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From a concerned husband

Post  ConcernedYorkieHubby on Thu Jul 12, 2018 10:45 pm

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.

ConcernedYorkieHubby

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Re: From a concerned husband

Post  emalita on Fri Jul 13, 2018 6:02 pm

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!

emalita

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Re: From a concerned husband

Post  Anonym on Fri Jul 27, 2018 12:01 pm

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

Anonym

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My Cure

Post  angelique2016 on Mon Jul 30, 2018 7:48 am

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

angelique2016

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Thank you!

Post  shope610 on Wed Oct 10, 2018 1:46 pm

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

shope610

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Re: From a concerned husband

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