His and Her Health

After a three month wait, I had an appt. with a vulva pain specialist. He took two swab tests of some type, wanted to know why my surgeon didn't remove my cervix with my hyst. He asked what bothered me most, I said the 24/7 burning that keeps my from bike riding, sitting comfortably and having sex. He patted my leg and smiled at me. WTF??<P>My urine showed I had another uti (that was the 10th one since my hyst. in Aug. '04) he told me to see one of the uro-gyns there. the first available appt. is over 6 months away.<P>He prescribed a 2% cortisone cream and forbid me to use anymore lidocain gel. He also said he didn't like the idea of using tri-cyclics. I told him I needed to work and function and that helped.<P>He dx contact dermatitis and gave me a list of things to avoid and or use. I was sent that list 3 months ago and have followed all the guidelines with no improvement. He said come back in 4 weeks, (next available appt. is in 7 weeks) and then he's going to do a biopsy and screen me for STD's and HPV. I've been married for 20 yrs. WHY would I need those tests?<P>I feel so hopeless again. I can hardly sit. The burning is so much worse with a uti, and I have bleeding and spotting very often even since having the hyst. <P>Is there no help? I didn't have any of these things before having a hysterectomy.

I am not sure why the specialist does not like tricyclics- or other medications to numb nerves such as SNRIs, Neurontin, etc. I do not have much success with topical steroids and they can be very irritating.<BR><P>------------------<BR>Andrew T. Goldstein<BR>Director, The Center For Vulvovaginal Disorders

Thank you for your response.<P>He said he didn't like the Nortrityline because it just masked the symptoms. I told him it enabled me to work and function. I have researched a LOT online and I haven't found anything negative about using them for pain.<P>He had such a bizarre reason about the lidocaine. He said if I used too much of it, someday when I needed dental work it wouldn't work. <P>I am going to scratch this dr. off my list. I have a very good GP that admits to not knowing much about dv, but is willing to read what I find online and see if he can help.<P>Thanks again.

Hi, I have been suffering from vulva pain for years. Use to only be once in while, seemed to follow my cycle. Now, it's pretty much all the time. I have a job where I sit all day and at the end of the day I hurt so bad. I sometimes feel like I am going mad. I can't take it anymore. I have seen 3 doctor's and I still don't know why I have this pain. On top of that, I am going through fertility treatments and can't use any medications. My question is does anyone out there know how to find one of these vulva pain specialists? I've tried searching and haven't come up with anything. Kinda nice to know I am not the only one with this problem, but I feel for all you others. (

Go to another vulvar specialist!! This one sounds like an idiot.

I saw multiple doctors and 3 vulvar specialists. Finally, the 4th one knew how to recognize and treat the problem. Don't give up!!! And beg the nurses for a fast appt. at the next clinic.

(However, I believe he was somewhat right about the lidocaine - your body can build up a tolerance to it and eventually it doesn't have much effect. So then using it at the dentist wouldn't numb the area if you have been using it for a long period of time.)

I think it's great that your GP is offering support. But make sure you keep looking for someone who has a lot more experience, also.

You might find a specialist near you through the NVA. http://www.nva.org/

You can find a specialist at nva.org, but they require at least a 45 dollar donation in order to get a list of specialists in your area. I had to do that about 3 weeks ago, after so much frustration in trying to find a doctor. I did find a specialist in my area, although he does not perform the surgery for vestibulitis. But at least now he can refer me to other doctors if that is the route I have to take. You should give it a shot. Good luck.

Thank you both. Good luck to you also. I'm so over it!

This is to catsanddogs, I too am in Brevard County and am at a dead end road to finding a specialist. I was wandering if you have had any luck in finding a specialist and if not then maybe we can get together and find one.

Tacy99
where are you located?

Hi, Listen I really must stress that your symptoms are very much like mine. I went to a vulva specialist (I won't mention the name!) and he did not help. I helped myself with research. Please read the thread I wrote called Pain free at last. I am. No burning. I am a spinning instructor and I couldn't ride anymore now I can. It has nothing to do with riding and everything to do with your whole body. Read the thread then feel free to respond with any questions. It takes a little while to fully recover. It took me 10 months BUT I felr relief after a few days and then slowly the burining disolved from every day of every week to every other day to then hours to finally only during my cycle and then nothing! It takes a person who is fed up. There is no magic bullet in what I did. NO DRUGS, NO SURGERY! Let me know. Listen to your body. She is screaming at you to change! Good health Laura

Hi - I'm new to this site. I've been dealing with vulva/labia issues for 3 years now. I'm trying to find the right doctor to help treat my symptoms. I burn and itch in the labia area. The left side constantly feels like something is in there. I had one doctor tell me I had a Wolffian Duct cyst and another could not find it and even sent me for an MRI which did not detect anything. I've been testing for STD's, had so many cultures done and am even seeing a physical therapist who specializes in vulvar pain who recently told me that they aren't sure why I'm not responding to therapy.

I'm new to this site and am trying to look up someone's thread. Can anyone advise on how to do this and let me know if anyone else is feeling this.

Thanks and be well..........

npm, here is a link to an article by Dr. Andrew Goldstein http://www.ourgyn.com/content/index.php?option=com_content&task=view&id=90&Itemid=66 .
If this does not give you the information you need please go to our website at www.ourgyn.com

npm,
are you under a physician's care currently. If not, your PT should be able to assist you if she is a vulvar pain specialist. Patients I see in my PT clinic with similar symptoms respond to PT in combinaion with medical treatments, as well as some other alternatives such as acupuncture.
Hope this helps
niva

<small>[ 09-10-2008, 10:39 PM: Message edited by: Moderator ]</small>

Hi Niva

My gyn doesn't know much about this condition. My PT does mainly work on vulva patients and isn't sure why I'm not responding better. I don't actually have pain in the vulva area, but instead off to the side. It does burn and itch, but most times feels like something is in there (sometimes a liquid feeling, sometimes a swelling, or just feels like something is in there). I've been been to PT just about once a week since May and still not better. Should I see a GYN who specializes more with vulva pain and work with them and my PT? Not sure if I need a vulva specialist though since pain is off to the far left of my labia. I'm pretty active, but do feel pain and discomfort everyday and can't be intimate.

Thank you.............npm