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Fri Apr 20, 2018 10:07 am by amyhp

» HELP!! Topical cream?
Mon Apr 16, 2018 5:49 pm by Sad

» Please tell me this can get better
Sun Apr 15, 2018 11:31 am by amf329

» Pressure to have sex.
Sun Apr 15, 2018 2:00 am by Sad

» Vulvodynia and other neurological diseases?
Sat Apr 14, 2018 8:00 pm by wuhujen

» I'M NEW - Do I listen to my gyno who I feel has it wrong?
Sat Apr 14, 2018 7:57 pm by wuhujen

» I wanted to share a resource that has made a huge difference for me
Wed Apr 11, 2018 9:28 pm by amf329

» Loneliness
Wed Apr 11, 2018 11:36 am by sophiarp

» I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone
Fri Apr 06, 2018 4:06 am by Warrior2010

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 4

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 3

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14

Lidocaine with condoms?

Wed Mar 21, 2018 10:44 pm by AEM1

Hi everyone! My doctor just prescribed me a topical lidocaine to administer before sex, but I forgot to ask if it is okay to use with condoms. Has anyone else used this before and know it is safe to use with condoms? Thanks! Very Happy
Unrelated, but I just started Lyrica a few weeks ago...no changes yet, but I'm hopeful something will come out of it. 3 years with vulvodynia and unable to have sex …

Comments: 1

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: 23

Recently Diagnosed which has motivated my research study

Tue Mar 06, 2018 4:54 pm by ebclose2free

Hi everyone,

My name is Eliza Barach and I was diagnosed with vulvodynia in October of 2017. I'm also PhD student at the State University of New York at Albany. I work several professors at SUNY, but one in particular, Dr. Mitch Earleywine researches marijuana and its possible efficacy as an alternative treatment. Our previous examined cannabis and symptoms of PMS/PMDD and found that women …

Comments: 0

MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

Comments: 3

New and desperate for advice

Sat Mar 03, 2018 2:37 pm by srbry

Hi everyone,

I'm new here and was told to find a support group because this is all getting a bit much really...

I lost my virginity when I was 18 and it hurt - that was normal. Loads of women had told me that it hurt so that was fine I didn't question that. I was with the same guy for a couple of months and each time after that it was uncomfortable and not great. I didn't tell him because I …

Comments: 3


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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