Intense vaginal itching under bladder wall

[andreamarie]

I do not have vulvadynia. I have been to a V specialist. When I first got i.c. thirty four yrs ago it came with intense vaginal itching under bladder wall. I had a fifteen yr near remission that came with menopause but three yrs ago after I got shingles the itching returned. It can be so bad that I sit in a hot tub with a washcloth in my mouth so no one will hear me screaming.

Initially I got relief with 3,000 mg of gabapentin and 100 of Lactimal. These are meds that treat neuropathic pain. I cannot take TSA's, Lyrica, or Cymbalta, which are also used. Eventually this did not hold.

I am having a bad flare now and in addition to the above I am using 5 mg Valium suppositories b.i.d. and two Percocets when I take the gabapentin. I am also using a Baclofen suppository and at nightime a few puffs of weed. I'm still having bad days and looking for a doc who understands neuropathic pain.

Does anyone else have intense itching in vagina?

[amaranthe]

How strict are you with the IC Diet? Can you tell any worsening of the intense itching if you eat certain foods? If you havent been very strict, I would try to watch that really carefully.

Also, I am wondering if you have tried antihistimines? These help alot of ICers with the same symptoms you have. But, lots of times it takes a while to find the right one and then get on the right dose and often the dose needs to be on the higher side for those with the symptoms of the itching bladder wall (and beneath it.)

I hope you find something that will help you soon. I dont have that symptom (thank God!), so I cannot imagine having to deal with that one too. Hope you feel better soon.

[andreamarie]

Vaginal itching

I have been on eleven diets with no luck. I do avoid ANYTHING acidic and use Prelief.
I have been on Atarax for yrs. I have not tried another antihistamine.

[ICNDonna]

Acids aren't the only potential problem foods. You'll find the latest IC diet food list at the link in my signature below.

I hope you feel better soon.

Donna

[andreamarie]

I'm already on the low oxalate diet

I've been on a low oxalate diet for yrs before I got i.c. because I have high oxalate levels from surgery I've had for Crohn's. I do avoid most of the foods that bother me: after eleven diets I've learned from trial and error.

[4realtho]

I too have had the vaginal itching. Mine came after riding a four wheeler for a little while with my husband and kids 6 days ago . I was fine when I was riding and then one I got off I was in intense pain. The itching came a little later..like the next day. My itching pain was more like tingly feelings. Is this the kind yours was? I am wondering if your is the same as mine. I didn't not go into a flare immediately either.. the ic flare came a few days after that. I went to the dr yesterday to see if maybe I had a yeast infection or something and he said no but sent off the cultures to be sure. I am confused. I am wondering if it is pelvic floor or bladder nerve pain. Can someone chime in and help? Thanks!

Oh and I am on cystoprotek and took the first time 11 days ago and was immediatly relieved so I thought I could just go for a short ride but now I know that I can't. I just wanted to have some fun for a change... Bad idea!!!

[sailawaygrl]

When you first posted this I thought I have never had that symptom. After thinking about what you were saying though, I do have that problem sometimes. It is horribly annoying and there is nothing that I know of that will help. I take 50 - 100 mg of hydrox a night and that doesn't seem to help. I don't know if it is nerve related or what it could be. I do notice more when I flare are am about to have a flare.

YOu aren't alone, I just don't know what it is either.

Sandra

[andreamarie]

Meds that have helped itching

gabapentin and possibly Lamictal. Also diazepam suppositories. The good thing is my bladder is good. The itching starts a day after a pelvic exam, even a mild one. I take one percocet with atarax.

I was on Baclofen supp but I'm stopping them. I don't know if they're helping and I'm overmedicated today. Nauseated, weak, dry mouth, etc.

[andreamarie]

vaginal itching

I do think it is nerve pain because gabapentin and lamictal are used for neuropathic pain. So are TSA's and Lyrica. After reading medical literature for six months I got so good at it that I started writing for the Crohn's and Colitis Foundation. I've been reading nonstop the last month. Cannoboids are also recommended so I have a few puffs at bedtime. Don't really think it helps but I'm out like a light.

Because I have so many different problems I see a lot of specialists who are really wonderful to me (except my pcp.) I used to see a sleep specialist who is a psychopharm and he returned an email even though he's no longer supposed to follow patients. Asked me about trazedone, but it causes urinary retention for me. Present sleep specialist is a neuro who thinks Sjogren's is at root of a lot of my problems. Together they did come up with a pain specialist who they did think would be good for me. When I was dx thirty some yrs ago no one gave PFD any importance except for the neuro I saw after urodynamic study. He put me on 30 mg. of Valium. I now find the suppositories more effective. I'm on 5 and 5 and think I need more but PCP made a big fuss about addiction, etc.
Psychiatrist who has been prescribing it for thirty yrs. got to specialist and got me the extra 5. I have some saved up and going to try using it round the clock.

[JennyBird]

Hi andreamarie-where do you live? If you are in the NJ/NY area, I have a wonderful doctor in New York City that knows a ton about nerve pain and itching. I can give you her info if you want.

[andreamarie]

My niece lives in Brooklyn and works in Manhattan. I would like the name of the doctor. Even if I can't get to this doc, I'm seeing a pain specialist next Thursday at Massachusetts General Hospital in Boston. My sleep specialist is a neurologist. I suspect either one would consult. I have another doc who probably would be willing also. My specialists are elite, but more important, really go the extra mile for me. Thanks.

[andreamarie]

Things have progressed. I am seeing a urogyn in Cambridge, MA. Dr. Eman Elkhardy. She immediately upped my valium suppositories to ten mg. twice a day. My ins just changed and they are now costing me thirty five dollars a month, before I had no copay. I also take oral valium on occasion when I'm out and about because the suppositories leak so much.

The urogyn immediately did a pelvic floor exam and recommended eight wks of pt. She said if that didn't work she'd do steroid trigger point injections. She said she found the "hot spot" I told her about where the itching is. She also told me to throw away all the creams, etc. I'd been given. I was down to the Valium suppositories anyway because the Baclofen was giving me diarrhea and severe disabling nausea cycles. I have Crohn's, in remmission, but my gastro was looking for everything else and was really concerned. I was using the baclofen rectally and was absorbing it well although it was a very small dose.

The pt that evaluated me is great. But she said she was not that availabe and assigned me to another pt. I was apprehensive but I thought I asked the right questions. BE CAREFUL; I WAS TOLD I'D BE IN SOME PAIN AFTERWARDS but she didn't know what she was doing. She kept looking at the computer and told me she didn't "shadow" the pt who evaluated me. The pt who evaluated me is one of the best.

It was July4 wknd and I really was in agony. I called my nephew who is a psychiatrist, an addiction specialist. He told me he'd come over because if I went to the ER they'd think I was drug seeking. He had some Perocet from a recent surgery he had and he stayed with me. He rubbed my lower back and helped me into the bathtub. I was a 1 when I went to her and now was a 10plus. Also, she irritated my urethra and I couldn't void, just dribble.

I emailed pt who evaluated me and she saw me day after holiday. I told her I was in pain for three days and she said she'd take over. She is not as availabile but so competent. She asked me questions about other pt and I could tell she was not pleased. It was clear other pt couldn't follow evaluation.

I've gone about three times and am really impressed. Still have itching but it doesn't get me screaming and I don't have it as much.

Still need meds and find hot baths (always did) a couple times a day really help. I then do relaxation exercises I did yrs ago.

i am so grateful that urgency and frequency didn't return and that pvd is now realized. The gyn component was there from day one but fifteen yrs ago no one understood it.

I simply cannot relate itching to diet. I have cut out high oxalate foods for the most part and am on a low acid diet. I also drink lots of water and take calcium citrate. I spoke to a nephrologist when I found out I had high oxalate levels (before i.c.) because it puts me at risk for kidney stones and he said I must be doing something right because I would have gotten them. I have not found that the extreme diets helped me, but everyone is different.

[JennyBird]

wow, you've really had a tough time. It does sound like you are starting to improve though. I'm glad you found a PT you like at least.

Did I give you the name of my doctor? I didn't see my response, but I may have private messaged you? If not, I see Dr. Coady at Soho OBGYN in NYC, and i go to Beyond Basics PT once a week or so, as needed. You can google both for their contact info. They've both been really great, and don't give up either!

I'm feeling better overall, but seem to be having what I call "mini-flares" every other week. One week I'll feel fine, then the next I'm flared up again, back to taking baths every day, back on muscle relaxers, instills, etc.. then it clears as fast as is starts. I'm in one again, I hope it clears up like the others have.

good luck, sounds like you are on the right track at least! Let me know if you ever need to talk, it helps!