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Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci


I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

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 (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

Comments: 10

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 1

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

Comments: 6

Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering


I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

Comments: 1

New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 3

Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

Comments: 0

Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 22

New to accepting this--- I also have Lupus, IBS, (possible IC and Crohn's) Anyone else?

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New to accepting this--- I also have Lupus, IBS, (possible IC and Crohn's) Anyone else?

Post  rhiannon75 on Sun Jan 13, 2013 12:14 am

Okay people. I have been living with chronic pain all over for years. Off and on I have painful sex, but at times I have experienced some really good sex. Rare, but I have. But normally, sex has always hurt and now, it is almost impossible. And I am including all types of sex here, not just intercourse. I have always had vaginal infections/UTI (never showed up on urinalysis but had all the symptoms) and pain off and on for years, but I attributed it to Fibromyalgia, Lupus, etc. Only this past year did I really even start losing sex drive, only because I knew it would hurt so badly. I am almost 38 so I guess it could also be hormonal. Not just my privates but also my joints and muscles all over my body because of my other health conditions so sex has been avoided. Miraculously my husband is sympathetic. We almost divorced in 2007 because my Lupus was undiagnosed at the time and I was extremely sick and in pain after having our son. He just didn't really believe me, although now he says he simply felt helpless and didn't know what else to do. Our relationship has withstood a lot but the possiblitiy of never having enjoyable sex with him again is devastating. I have lost a lot to Lupus, the ability to even swim in the ocean or sit out on the beach (Lupus and the sun are enemies) losing friendships because people don't understand. Not being as attractive as I once was, Lupus affects the hair, skin, and just makes you look unhealthy even though most people may think you look fine and its so frustrating.

I am on this board because in Sept. I had what I thought was a raging yeast infection. I had stabbing pains in my vulva. I had visibly swollen "parts." I had discharge both from the vagina and urethra, and also my "IBS" resurfaced after being dormant since going gluten free a year before. I even had some brownish discharge from the urethra. I am still currently experiencing irritable bowel. The vulvar pain, itching and burning got so bad in Oct. that I was convinced it was some latent Herpes outbreak or something. What else could feel like hydrochloric acid on your parts? Like I said, having infections and pain down there was not completely new, but nothing like this...

At the very least I thought it was a yeast infection, and because I have Lupus I assumed it was just out of control. I called the gyno and I was prescribed both oral Diflucan and a 7 day treatment. Both bad ideas. I threw up for days following the oral and the vaginal cream set me on more fire. I was having panic attacks. I was certain it was Herpes. Maybe my husband had given me an STD when we were separated in 2007 and it was just rearing its ugly head! I didn't feel well overall. Maybe I didn't have Lupus at all! Maybe it was Herpes or HPV, both can make you sick for years as they are viruses!!!!! Anyway, you see where I am going. I was scared.

I went to my awesome gyno. He took one look, and after listening to me said " You don't have any yeast infections or recognizable bacterial infections. But I think you have the beginning symptoms of IC. I also I have always suspected that you have Crohn's, and what I am seeing down here is some very thin, raw, skin between your rectum and vagina, like a developing fistula, and slight swelling overall. Sometimes this can be associated with Crohn's. I would like you to see a new gastroenterologist. Lupus and Chron's and IC can all be interrelated."

Basically he had sent me to gastro years before and the colonoscopy didn't reveal anything. But this time he hinted that he didn't really care for that particular doctor and he referred me to a new out of town gastro and I will be seeing him in a few weeks. Also said that if the urinary problems continued, he would refer me to a urologist.

Well here I am. The majority of the pain and burning stopped over Christmas although pants will flare it up every time. When I had my period symptoms subsided but now they are back. I have stimulated my husband but I have been terrified to recieve and rightly so, because after a month with no stimulation, I tried a little petting and ended up crying, and for 3 days since I have had another flare up of itching, burning, and this time increased urination. I feel also like I have something heavy sitting on top of my pubic bone when I stand up and walk around. I am having major irritable bowel. I am a music teacher. I have to be active, but I had to come home from school within a few hours of being there for general discomfort and I have felt terrible.

I am reading everyone's posts and its pretty obvious I have vulvodynia. I also have had some weird cut like things in the past and sores that were not STDs, yeasts, or vaginitis. The sores have been attributed to Lupus but may also have been Crohn's.

I am here because I have been very strong about my autoimmune diseases and have fought depression through it all. BUT THIS ON TOP OF IT ALL???? Its terrible. It's like SEX is just jumping out at me in ads, tv, and I see young couples and I am just mortified that I may never enjoy making love again. The psychological aspects of Lupus have always been the most crippling, and since Lupus destroys everything, I would be apt to blame this vulvodynia on it. Anyone else with similar problems????

Last edited by rhiannon75 on Sun Jan 13, 2013 12:22 am; edited 1 time in total (Reason for editing : grammar)


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Re: New to accepting this--- I also have Lupus, IBS, (possible IC and Crohn's) Anyone else?

Post  Sarah001 on Sun Jan 13, 2013 3:46 pm

Hi rhiannon welcome to the forum! Like you I have a couple of other chronic pain conditions (Fibromyalgia and Hypermobility Syndrome) so I'm used to constant pain but the V is just a nightmare isn't it?! What really puzzles me about your case though is the brown discharge, have they taken a swab of that and tested it? Brown discharge in women is usually old blood which could be the case but if you get it alot I think that is something that warrants further investigation because it isn't part of the Vulvodynia profile plus if it is old blood and you get it alot that needs investigating too. I also think they should check very carefully the thin raw skin between vagina and rectum because even a tiny hole would allow bacteria through which could easily cause vulvar infections and pain. I just feel you're not done with tests yet and V is a "diagnosis" of exclusion which means they should have thoroughly checked those issues out before they give it. I hope you have a decent doctor who will look into these things for you and if they yield no relevant information and it is V fair enough but until they do I think they've been a bit hasty.


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Re: New to accepting this--- I also have Lupus, IBS, (possible IC and Crohn's) Anyone else?

Post  rhiannon75 on Sun Jan 13, 2013 8:42 pm

Thank you for your reply. I have not been officially diagnosed and I figure I will have to go to tons of doctors before everything is straightened out. I took years of having my pain dismissed before I finally got a Lupus diagnosis. I am afraid of cytoscopy because I worry it will just aggravate everything further. I don't have the brown discharge all the time but I have noticed it a couple of times and also I have a white crusty (gross, sorry) type of discharge where my urethra would be on my underwear everyday.

I just started the low oxalate diet if for nothing more than the hope it gives. I have tried every type of diet out there for my chronic health issues and I truly believe that the root of it all is systemic Candidiasis (yeast overgrowth) but no Western trained doctors will even conisder it unless you have aids or cancer. I tried to get rid of it for 2 weeks a couple of years ago by doing cleanses and anti-yeast diet and I got too sick to function. I guess you need to be in a clinic with holistic doctors to help you. So for now I am trying to just cut back on the foods that are aggravators. I went totally (no cheating) gluten free last year and I improved for a while but now I am worse than ever and I practically have lived on potatoes and beans as a way to get my fill in place of breads, both are high oxalate foods. I haven't eaten red meat in 6 years so I eat chicken, some veggies (not enough) and potatoes, and some junk food that is gf. I was completely raw foods, vegan organic for 8 weeks and got down to 90 lbs so that diet wasn't a fit for me either. I have just tried anything to make me feel better but nothing is a permanent fix.

I guess I know I will be having a colonoscopy soon. I hope a urologist will really listen about what else is going on down there.


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