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» Lichen Sclerosus
Fri Feb 16, 2018 2:47 am by ryn207

» MAY HAVE FOUND A CURE- PLEASE READ
Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

» NO PAIN DURING SEX
Wed Feb 14, 2018 3:33 am by Athena

» Coping with Vulvodynia
Tue Feb 13, 2018 3:55 pm by NaughtyNanny

» Newby not sure where to turn
Tue Feb 13, 2018 2:10 pm by sarisbaris

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: 0

NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

Comments: 2

Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

Comments: 4

Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



Comments: 8

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

Comments: 0

So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

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: 4

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

Comments: 11


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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