His and Her Health

I have suffered with vulvar vestibulitis for 22 years. The main symptom was pain with intercourse. I have seen countless doctors and tried EVERY treatment ever thought of for this problem. Recently I had surgery at the University of Utah Hospital with Dr. Howard Sharp. Several doctors had referred me here. He removed the vulvar vestible. Following surgery I had to stretch the vagina as well as use a cream containing hyocortisone and shortening, mixed by a pharmacist. The cream was to soothe the remaining irritated skin. I am cured! It is a miracle. The information on the internet about the surgery is not all that positive so I was reluctant to do it but it absolutely works!

WOw! Thanks so much for your posting! I have suffered for 5 years with no diagnosis until last week and I have tried everything as well! My main sympton was pain on intercourse as well as tampons, and the "Qtip test". I have not been able to have intercourse except to try if any of the remedies were working and it was excruciating every time I tried! My new doctor that I just started seeing for this diagnosed me last week and is suggesting I have surgery and I am ready but VERY nervous it wont work and I can not sleep (this is why it is almost 3am when I am writing this!). would love to be able to talk to you about the surgery because since this is so new I have nobody to talk to and have sooo many questions! can you click on my link and email me or call me to talk??? I really am very emotionally drained and need some support!! :confused: Thanks in advance!

i hope it is not too late to tell you not to have hte vestibulectomy. I had mine over a year ago and have had no relief. The vestibulities specialist i see now told me that surgery should be the absolute last resort since it is not always successful. good luck. (see my post for my experience-7/22/06)

I had my surgery june 21 and it has been just about 5 weeks post surgery. I am doing pretty good but to tell you if it worked or not, I have no clue. Still have the stitches in and sore but day by day it feels slightly better. I didn't really have much choice about doing the surgery since I have seen 8 other docs before the 9th one who did it and have tried every cream, medication, injections, etc and nothing had worked. I just pray it gives me some relief and that it was not done for nothing. Sorry to hear that you are not feeling better from it. Did you try other things before?

I have been dealing with vestibulitis for about 15 years. It is the number one reason for problems in relationships that I have had. Some guys really tried working with me, but after time, we basically became really good friends since the amount of sex we had was limited. If the sex wasn't an issue, many of my relationships would not have gone in the direction that they did.

I have tried many different things and spent thousands of dollars. Currently, I'm trying biofeedback and physical therapy. I can't believe the things I have done and continue to do to try to fix this. There have been some really unconventional treatments that I've tried. I only have pain during intercourse. I was scheduled to have the surgery in the past, but chickened out. I heard of people having worse situations after the surgery. I know it has been months since everyone last posted on this topic, but can you tell me the progress you've had since your surgeries? If you had to do it all over again, would you still have done it?

candycorn;
I am sorry you have suffered for so many years. I totally understand. I am still happy I had the surgery. It has been 1 year and I would say almost a complete cure. It is a huge difference. After surgery, I know alot of women still need physical therapy or stretching to complete the recovery. My doctor had done over 300 of these surgeries with a 95% patient improvement. Choose a doctor that has experience and a good reputation for this surgery. Dr. Sharp came highly recommended by several other obgyn's for this surgery. Good luck!

Does anyone know a really good obgyn in salt lake or utah county that has performed many surgeries for this problem?? I really want to go to sharpe, but he is not on my insurance!

I don't live in utah, but I do have a possible suggestion. If you cannot find anyone else, you still might be able to get your insurance to cover it. You would need a letter from the M.D stating that he is the treating specialist in the area highlighting that not just any gyn is familiar with this and highlighting the treatment plan (surgery). I did this where I live. Insurance covered it after my doc wrote a letter. Call your insurance and explain your situation. Ask them what they would need stated in the letter in order for it to be considered. I wrote down word for word what they told me on the phone and then my doc wrote the letter based on what they needed. Good Luck!

Does anyone know of any highly recommended doctors in Massachusetts?

Have you tried calling one of the big Boston Hospitals and ask for a list of specialist in VV. They sometimes will be glad to do that.
Good Luck

For more informative article on this and other female problems go to www.bermansexualhealth.com

While your physician might be the very best, I do always cringe when I hear things like "My doctor had done over 300 of these surgeries with a 95% patient improvement."

The last thing those of you with pelvic pain and vestibulitis need to hear from me is how complex the situation can be. However, for women new to the subject and to this thread, I hope they will avoid any surgeries until they have exhausted other options.

Here are a couple of links that people new to the subject might find helpful:

http://www.pelvicpain.org/
International Pelvic Pain Society

http://www.physioforwomen.com/index_e.html#articles
(scroll down for links to Tali's articles)

http://www.ichelp.org/
International Cystitis Association

http://www.vulvarpainfoundation.org/
The Vulvar Pain Foundation

Hi All,

After seeing the suffering of so many patients, I am hoping for advances in prevention, treatment, and cure of VV.

I'm hoping Andrew Goldstein will weigh in here.
I second Paul J's opinion that it's important to try many other treatments first. I have had several patients who had bad VV who recovered without surgery. The difficult thing is that each patient's "recipe" for cure seems to be unique. So it takes a lot of patience to hang in there and systematically try different options. Pelvic PT seems to be a very important component of treatment, since muscle tension and fear of pain potentiate pain. Clearly, if all else fails, surgery is a reasonable choice.

I'm hoping against hope that they may figure out what factor(s) is causing VV. Dr. Goldstein once told me that he is afraid that topical meds for yeast may be partly to blame, and that he now feel that if you suspect you have a yeast infection, it is most important not to self treat with a topical cream. He believes the best thing is to get a diagnosis, and then get a Rx for an oral antifungal if it is yeast.
So that's my little plug for a little bit of prevention.

I want to second Paul's opinion that joining a support group is wise.

apz

I'd like to add to what your saying and share my story.

I once had pain-free sex. And, I've never used topical meds to treat yeast. What I do recall is starting birth control and being on antibiotics for out-of-control sinusitis around the same time years ago. I developed colitis and yeast from antibiotics (never had a problem with them before) and yeast from starting the pill too. I didn't have a partner during that time, but soon after when I did, sex was no longer the same. I took oral meds for the yeast. So, I agree that there is some sort of yeast/hormonal link.

I tried PT before surgery. I could only get so far with progress because the pain was so bad at entry. I only needed 10 visits to know PT was only going to help so much. I've since had a vestibulectomy (9 weeks ago) and I am already amazed at the improvement in my vestibule. What puzzles me is why people view surgery as a last resort? Sure, you have to fit the crtiteria for surgery, but if you do, why wait? I hear of women going through months and months of PT. There is nothing wrong with PT as I am now going through it after surgery too. But why prolong the treatment process? The surgery was not bad at all. I would do it all over again. My first PT appointment back after surgery was so much more advanced with progress than my last PT appt before surgery. I'm learning to relax my muscles as I anticipate pain when something enters me. That's what happens when you do experience pain for years at a time. Now, I feel my PT can get so much more done without the terrible pain I used to feel. In my opinion, the first two weeks after surgery were the "worst"/most involved. I'd rather be down for a week or two and be on my way to recovery than to still be going to PT 6 months at a time like some women say they do on the chat support groups.

Again, you have to make sure you are a candidate for surgery. But if you are, why prolong the treatment process? Most of us have waited long enough to get diagnosed. I do not like the "if all else fails approach". I want what is going to give me the highest success rate in the least amount of time. Trust me, if your vaginal vestibule hurt like hell with the slightest touch by a q-tip, you would want to do what gave you the most promising outcome in the quickest (most realistic) amt of time.

I agree as I too exhausted sooo many options before even getting diagnosed and it all makes sense in my case. I had ONLY pain on contact and one doc told me to go through PT and I tried for 2 weeks but the tissue was so messed up that she could not even put any pressure on the vestibule so I never released my muscle tensions. I had the surgery June 21st and it was a complete success! I did not need any PT after and once my body realized that it was not going to hurt, my muscles relaxed on their own. If I would have known 5 years ago there was a logical treatment for a certain type of VV for contact pain only, I would had the surgery years back since the mental and physical suffering caused more damage along with all the other creams, steroids, treatments, etc did to my skin. Like mentioned many times before, it is not for everyone and I did try many things but I feel that some of those things actually thinned my skin and made it worse to the point of no return. I am very happy to have gone through it for becoming pain free after 5 years! Stacy