Vulvar Vestibulitis

[poetgirl]

For nearly a year now I've had the same symptoms - pain, burning and redness/rawness in the vulvar region, usually flaring up a week or so before my period. Forget about trying to sit comfortably! Anyway I went to a new OB-GYN today and he did the swab test, etc and said I had a "textbook" case. (Lucky me...)
:(
He is starting me on an estrogen cream to see if it will help. Has anyone else been through this? I am feeling less of the vulvar pain now that I've been on the IC meds, but still, there was definitely sore spots when he did the swab test. eek

[momw/ic]

The estrogen has worked well for me. Also I started using a mild soap for allergy sensitive skin. My doc suggested a mild soap and wash undies separate from other clothes in an allergy detergent like Ivory Snow and don't use any fabric softener or dryer sheets. I have seen a total remission in my symptoms since trying this. My doc says using fabric softener is the same as pouring motor oil in your undies and then wearing them! Also, wear only cotton undies.

Good luck and I hope this helps.

[poetgirl]

Thanks for the suggestions. I have started washing with Cetaphil, since it's fragrance-free and non-irritating (it's what I use to wash my face since my skin is so sensitive.) I started washing my clothes in fragrance/dye free detergent -- haven't tried drying them without the dryer sheets though.

The Detrol has helped curb the bladder spasms and leakage/stress incontinence, which was making the vestibulitis really painful. It's kind of nice not to feel like I'm sitting on a hot plate all the time! eek

[dawnlizbeth]

Hi there...I have not been diagnosed with vulvodynia by a specialist but my primary care provider is pretty certain I have it. Anyways. I too have found that detergents make a big difference. I don't know just how sensitive you are but I have found I can tolerat Dreft detergent, I think it is usually used for baby clothes. Might be more cost effective than the face soap? Also, I can't use normal dryer sheets but I can use the Bounce "free" ones. They dont have any fragrances in them.The box has a green raindrop on it. Also, I take neurontin for an autoimmune problem. I noticed that a lot of my vulvodynia/vestibulits type symptoms seems to be a lot more tolerable after my doctor increased my dosage a year or so ago. Good luck!
Dawn

[poetgirl]

Thanks for the tips. I guess it's all a matter of trial and error to see what helps and what doesn't. Fragrance and dye-free all the way!

I'm finally not having the burning and so forth, and I've got that IC cushion to minimize the pressure since I sit at a computer all day, so I've been feeling OK for the past week or two. However, I had sex last night for the first time in a month and it was rather uncomfortable. :( I found that switching positions some helped a little but all in all, not what I'd hoped for.

[dawnlizbeth]

i know just how you feel. my hubby came back last week after being gone for three months. we STILL have not had sex. i know i should initiate it but i'm having a flare & i just know i won't enjoy it much. also, i have no libido, that has been gone for a really long time though. my poor husband.
sigh.
dawn

[poetgirl]

Libido? What libido? :( And I totally know what you mean about hesitating to initiate, because you're afraid of experiencing more pain. In the middle of a flare, I don't want any physical contact at all. I just want to curl up into a ball. What sucks is when I'm actually feeling pretty good, so I have sex and then spend the rest of the night and the following day (or two or three) in pain. I know I could do all of the other stuff and my husband would be happy so long as he was pleasured, but sometimes I just want to "get it on" like we used to.

I hope this estrogen cream will help some. It doesn't seem like it should be used long-term, based on all the warnings in the package. So, then what?

[dawnlizbeth]

Exactly. I miss the good old days when I didn't have to think about whether it was ok or not to have sex. And I can't recall when the last time thinking about sex was gee I'd like to have sex now as opposed to sigh...i suppose I really SHOULD have sex. Also, its very, very unfair of me & I am trying to stop being selfish but I just don't enjoy doing the "other things" I think you were referring to when I don't have any libido. Its boring when you are not in the mood. And whats worse, my husband senses this & I don't think he enjoys it eithers. Very exasperating. I am so lucky to have a husband that will put up with all my medical problems that I am just going to have to work on this more I guess. I really don't want him to divorce me later down the road.
Dawn

[Kace]

Know exactly how you both feel - and sadly don't have many words of wisdom as my 8 yr marriage ended in divorce largely due to vv/ic and endo. What is is they say, if the sex is good it it 5% of a marriage, if it is bad it is 95%. So much for in sickness and in health. At any rate, my dr did rx lidocaine cream to use before and after sex which did help. You may want to ask about clobetasol cream too which I used for a long time. It helped but isn't a cure and not for lifetime use either as it is a steroid cream. I read about some doctors using cromolyn cream too but haven't tried that. Worth asking about though.

[poetgirl]

Dawnlisbeth,
The situation with your husband sounds similar to mine in some ways. He is supportive and wants for me to get better, but then the whole "being fair to him" factor always pops up. And I know I need to focus more attention on his needs but sometimes I feel like whatever I suggest still isn't "fair" to him. And the low libido thing is really a problem. I find myself becoming really defensive and angry that I have to map out a solution when I'm still trying to come to terms with this illness and what effect it has on me. Mostly I just wish I had a higher libido right now, because then I would have the energy and interest to do the other things (oral sex, etc) that would keep some sense of intimacy alive in our marriage.

How long does it take before you feel any relief from the estrogen cream? My doctor did not want to have me use a steroid-based cream just yet because it tends to cause the skin to thin, which can exacerbate the symptoms.

Kace, I'm sorry to hear things didn't work out with you and your husband. I often feel like the 95% thing is always hanging over my head. We could probably stay married for a while in a non-sexual relationship but I think that it would erode our marriage after a while, no matter how much he loves me.

[Kace]

Thanks, Poetgirl - it has been a rough year, almost two now come to think of it but in retrospect though his complaint was that he "didn't get married so he could live like a priest" all the sex in the world would never have been enough to fill the void inside HIM. And it still isn't. He's been remarried now almost a year and I am sure has made up for lost time in the sack but is he any happier? I doubt it. Time will tell. Hang in there, hard as it is...

[dawnlizbeth]

Poetgirl,
yep. sounds like we are in the same boat. I guess most of us with these conditions are too though. have you tried the lydocaine type creams yet? my doctor just gave me some today. if it does not work i may look into the estrogen cream myself. i am moving to florida next month though so i will have to do that through a new dr. this dr. mentioned something about having a biopsy of the area first to make sure that there were not any skin problems (thinning perhaps) before i tried the estrogen. i've never heard of this but i suppose it makes sense.
dawn

[poetgirl]

I haven't tried the lidocaine-based cream yet. I don't know if the estrogen cream is working for me either, to tell you the truth. Maybe I sat too long yesterday or something but I was experiencing a lot of burning and rawness last night, which of course flared up the IC, so I had to take Levsin in order to calm the bladder down enough (at 2AM) in order to finally get some sleep. The area has been inflamed for the past month, whether or not it hurts, but sex definitely makes the inflammation worse (I had sex 3 days ago and it's worse now!) Time to call the gynecologist again... :(

Dawnlizabeth and Kace -- did you have this condition when you met your husbands? I didn't (we were together 7 years when we got married, but I developed all of these problems a few years ago) and some days I almost wish I did. Not because I want to have this condition but because it would have been negotiated into the relationship from the beginning, rather than this problem that has changed the nature of our sexual relationship. Does that make any sense?

[trudyjhtwo]

I am wondering which bath soaps people find the least irritating? My doc said "no soap there" which sounded gross, but does help. I wash with warm water and then use soap elsewhere on my body in the bath. The problem is what's the least irritating soap to use in the bath, as some of it undoubtedly gets where it shouldn't. I did try a hand held shower thing so I could take a shower, but the pressure of the water hurts, so I'm back to baths.

thanks, trudy (trudyjh@aol.com)

[trudyjhtwo]

p.s. I do find lidocaine helps a lot. Initially it stings/burns but then...peace.

[Finncoffey22]

Hello,

[Finncoffey22]

Hello,
Sorry about that last post. I understand about the sever pain. 4 years ago I discovered I had vulvar vestibulitis. I tried everything the creams helped some but when it came down to it I could never be intimate with my husband (whom I had just married) and it hurt just to wear pants somedays. I have had 3 surgeries to remove the glands (Bartholin glands, Skene's glands and most of the posterior fourchette - the area around the vaginal opening). Today I am a new woman. Very rarely do I every have any pain - now I only get mild discomfort during my period. I have NO pain with sex :) and truly enjoy it. I had to use dilators to stretch the skin since they removed most of the normal outter skin and pulled the skin from inside the vagina out. I would never say it was easy - the surgeries were really hard it took a long time to recover. I had my last surgery on the Skene's glands almost exactly a year ago and as far as the v.v. goes I am great. I have had an extremely hard time with my ic but the removal of the glands was the best decision I have ever made. It took me until this fall to be back to normal but I am better than before. I had to reteach myself to not get nervous before sex because all I every could think was it was going to hurt.
My prayers are with you - it is such an emotionally trying condition. I spent many days just crying because it hurt so much and affected my life so terribly before the surgeries.

I am sending all of my thoughts and prayers.

Good Luck
Finn hi

[sanctuary]

Replends is great for this pain and dryness, can be bought at any drug store, less then estrogen too..also Lidocaine cream helps the burn. I have this too, poor you :-( I can't do estrogen but Replends helps better without side affects. Also, sitting on an ice jell pack is wonderful for the burn as well and especially after sex.if you still can have sex.. :confused: not me :( ..sanctuary

[Kelly R.]

Hi ladies.

I was diagnosed with VV in 1990, surgery in 1993, and am freshly diagnosed with IC. For me, surgery, desipramine (a tricyclic anti-depressant) and a low oxalate diet were the three things that have helped most with the VV. I can't imagine life without desipramine! Astroglide wink is another great help, and I only use Cetaphil when I feel I must have some kind of soap (yes, I too have been told that it isn't necessary, but there are days...)

Re the undies, my doc said white cotton, only unscented detergent, no fabric softner, and to run them through two rinse cycles after washing. He didn't go quite as far as the motor oil analogy, but that was his gist. "What you wash with matters less than getting it out of there!"

My GYN recommended lidocaine cream for the IC symptoms. I tried it for 3-4 days, but the burning got progressively worse each time I used it. Anyone else with this experience?

Thanks!

[KellyL]

Kelly R--your story sounds familiar. I've had VV since 1991, IC since 1996 and I've had success with Calcium Citrate and now Desipramine (and Elmiron and Detrol LA). This is the first time I can say I feel better in a long time. It's strange because I've been wanting to talk about having a baby and it has been causing some issues between my husband and I. He's like, I can't take another two years of this (off meds for pregnancy and having more pain). Are we totally going to go backwards now that I feel better and go off meds to try to have a baby?
Poetgirl, I haven't had any luck with estrogen creams, but have tried many things. A&D ointment (like what they give babies with a diaper rash) is sometimes soothing for me. Kelly

[Kelly R.]

Hi Kelly L.

Two of my docs said that I could continue the desipramine while trying to get pregnant (and I'm on a hefty dose). After becoming pregnant, they said they try to bring folks off of it gradually, but that if it was needed, I could continue it during pregnancy. I don't know about the Elmiron (just started that, and we've decided not to have children, at least not for the time being).

I can understand your DH's fear about going med-less. My docs said intense pain would be far worse than the meds, which are usually approached with an abundance of caution. So I might get multiple opinions on this one. I know some very beautiful (and healthy) antidepressant babies... baby

[poetgirl]

Thanks, all, for the advice. I'm going in for a biopsy on Friday to see what's been causing those lesions. Some days I'm totally OK and then there are other days where the VV starts off a whole chain reaction flare-up. Sigh. Has anyone had their Skene's glands get infected? That's happened to me a couple of times already. What the heck are those glands for anyway?

[Im Colleen]

Does the burning and rawness from vulvodynia improve when you go on ic drugs like elmiron or elavil, or do you need different specific ones for the vulvodynia?

Thanks,
Colleen

[poetgirl]

I have been on Elmiron since March and have not noticed any change with the vulvar vestibulitis. Then again, I'm not sure if it's had a lot of impact on the IC yet either (once you start taking a bunch of drugs at once it's hard to say whether one in particular is helpful) but Elmiron does take a while to kick in. I was prescribed Elavil to help with the VV, but instead it seems to have only really helped with my IC symptoms (not that I'm complaining!) I seem to experience the rawness and burning you describe only when the vulvar area becomes inflamed. Certain things, like urine or menstrual blood seem to irritate the vulvar area further.

[Im Colleen]

thanks poetgirl for your help... Do the symptoms of vulvodynia get worse over time? I have burning that was worse right before and during my period, but when it's over, the burning is still there, but much less so. Does it get progressively worse where I will have the bad burning constantly?

Thanks,
Colleen

[poetgirl]

For me, the burning is not constant. It tends to get aggravated by certain things, cyclic changes like my hormones are included. I was feeling a lot of burning the past two weeks, but now that my period is over, the burning has completely subsided.

If I had intercourse there's a good chance I would experience burning and maybe some urgency/frequency the next day if I wasn't diligent about using lubricant or rinsing the area with cool water afterwards.

[crazylady]

For 22 years I suffered with Vulvar Vestibulitis. I have seen countless doctors who misdiagnosed it and tried EVERY treatment out there with no success. The only way to diagnose it is for a doctor (who knows what they are looking for) to use the cotton swab test. I recently had surgery to remove the vulvar vestible and I am actually cured! It is a miracle. The doctor who performed the surgery is Howard Sharp at the University of Utah Medical Center. Several doctors had referred me there. It has been 6 months since the surgery and the pain is finally gone. After surgery, I also needed to do vaginal stretching and use a cream that was mixed by a pharmacist containing hydrocortisone and shortening to soothe the remaining irritated skin. There is hope!