[Question #2657] Chronic HPV and vulvar vestibulitis pain

45 months ago

22 years ago, I started having vulvar burning, vulvar vestibulitis. The skin was red & burned. I couldn't wear clothes with lycra/spandex/synthetics. Sitting & sex burned. 2-3 years later, lesions appeared. My doctor thought they were warts, & froze them off, & then gave me interferon injections. He said he couldn’t do DNA typing for vulvar warts. I got better & felt normal for 7 years. Then I started having occasional mild, abn. probs. In 2012, I again couldn't wear spandex. In 2013 five bumps were seen & burned off. Again, no HPV DNA typing, because it was on my vulva. I still had some difficulty with clothes, but no lesions visible, so I gave up. By 2015, my pain level was where it had been years before; clothes, sitting, etc, hurt. I gave up & lived with it until June 2017, when I went to the doctor & she saw lesions that she described as vesicles. She said it looked more like herpes, & tested, but the test was negative. She assumes it’s warts. She said Imiquimod would be best. But I read that it’s bad for vulvar vestibulitis. She suggested cutting it out; but I read that cutting could cause permanent pain. She said she could biopsy for cancer, but not type the HPV, and then freeze it off, but said that wouldn't kill the virus in adjacent tissue, so I'd probably get more warts and the pain might continue. I also now have rectal prolapse, which causes chronic mucus that irritates the tissue. I try to get rid of the mucus, but it comes back soon after. I need colon surgery, but have not figured out the best option. Can you tell me the best treatment, for me, for the warts & surrounding infected tissue? How can I get the virus into remission? Someone said Gropinosin and beta d glucan helped a friend with HPV. Gropinosin isn’t available in the US, but any thoughts about it?  

Edward W. Hook M.D.
Edward W. Hook M.D.
45 months ago
Welcome to our Forum.  I'll be happy to provide some comments.  Vestibulitis or vulvadynia is a vulvar pain syndrome which is suggested to have many causes.  The clinical appearance of the syndrome can vary from person to person but the common part of the problem is the presence of vulvar pain of the sort you describe.  I am not a specialist in this syndrome and most specialists agree that the syndrome is NOT an STI and thus is not associated with either HPV or HSV infections.  The best treatment outcomes occur when the syndrome is treated by an experienced specialist.  Even then the problem can be challenging to solve. 

In your case, it appears that there is no evidence that you have HPV or, if you do, that it is contributing to your symptoms.  I must disagree with your doctor that it is not possible to rule out HPV as there are minimally invasive biopsy procedures which can be used to diagnosis the presence or absence of HPV in vulvar lesions. 

My suggestion is that you may want to seek a second opinion from a gynecologist specializing in vulvar diseases.  Sorry I do not have more to offer.   EWH
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45 months ago
Dear Dr. Hook, What I really need to know is the best way to treat HPV warts and the virus itself. Let's assume that I do have HPV, because I've been told by 3 physicians that I have had genital warts. Although the HPV wasn't DNA typed, the doctors said that they were genital warts, and that I do have HPV, definitely. Given my vulvar sensitivity, please tell me what medication(s) you would recommend to put the virus into remission, and which method you would use to remove the current warts? My brother is a surgeon, and could explain my situation more clearly, but I am trying my best. 
                                                                          
I appreciate your recommendation to see a vulvar specialist, but I have seen many of the very best in the country. I live in a major metropolitan area, and have seen physicians at top teaching hospitals, locally and afar, for my vulvodynia. I do know that in the past, removal of the warts, along with interferon alpha, "cured" my pain 100% for many years. 

So for now, my one and only concern is removal of the warts, and putting the virus into remission. My only question for you is, what is the best and safest way to do this, given my genital sensitivity? 

My sincerest thanks. 
Edward W. Hook M.D.
Edward W. Hook M.D.
45 months ago
There is no single approach to HPV infectiontherapy, if you have it, that is better than others.  For external warts imiquimod is highly effective and may be better than other therapies for preventing recurrences.  Unlike imiquimod which stimulates the local immune response to infection, other therapies such as freezing, cautery, laser and podophyllin are essentially destructive therapies with slightly higher relapse rates than for imiquimod. 

While I appreciate your confidence in your doctors, if they are expert I am perplexed (to say the least) why they cannot prove that you have HPV and what type it is.  Your vulvodynia makes your cases unusual and, in my opinion, if your doctors have not PROVED that you have HPV and what type it is, they are only guessing at the best approach to your therapy.  EWH
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