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» New here would very much appreciate advice at the end of my rope
Fri Jan 11, 2019 1:46 am by Jma990o

» Diagnosed Recently
Tue Jan 08, 2019 3:55 pm by flissyg

» Looking for suggestions or encouragement
Thu Jan 03, 2019 11:09 am by Gaby

» Clinical Trial for Vulvodynia Treatment
Wed Dec 19, 2018 7:13 pm by wramirez

» New and need advice and help
Thu Dec 13, 2018 9:48 am by Derry59

» Things that have worked for me
Tue Dec 11, 2018 11:32 am by Amethyst

» Found relief after more than 15 years of pain!
Tue Dec 11, 2018 11:17 am by Amethyst

» I'm new to this forum and would love some advice! :)
Tue Dec 11, 2018 3:06 am by Cin124

» I think I know what causes vulvodynia-it's the memory of pain
Sat Dec 08, 2018 1:24 pm by foxysugarpants

New here would very much appreciate advice at the end of my rope

Wed Jan 09, 2019 9:09 pm by Jma990o

This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

Comments: 2

Diagnosed Recently

Tue Jan 08, 2019 3:55 pm by flissyg

Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

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Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 6

New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

Comments: 4

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: 13

Hello. Happy to have found this group.

Fri Dec 07, 2018 9:01 pm by foxysugarpants

I am new here and hope to gain some insight into my vulva pain. I suffered for a long time not realizing that there are ways to feel better. I saw the Dr. yesterday and I am starting P/T pelvic and valium suppositories. queen

Comments: 0

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

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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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