Monday, November 12, 2012

Congenital Neuroproliferative Vestibulodynia

I went to see Dr. Goldstein today. He performed an examination, drew blood (to check my hormone levels) and then held the following consultation with me.


At this point, it is highly unlikely that my pain is being caused simply due to contraceptives. For one, I wasn't on them that long (only 4 months or so before getting married). Also, my blood tests last time I came in showed my hormones were back at appropriate levels. So what that means is that whatever dryness or thinness the tissue was experiencing due to not having enough hormones should be rectified at this point, as much as it could be. However, I am still feeling pain, ranging from slight amounts to INTENSE pain (depending on where in the vulvar vestibule he touches with the Q-tip.)

Thus, it seems most likely that what I have is Congenital Neuroproliferative Vestibulodynia. Congenital means 'from birth', neuroproliferative means 'a proliferation of nerves, so basically, too many nerves' and vestibulodynia means 'pain of the vestibule area in the vagina. Women who have this condition can have up to 30 times the amount of nerve endings as should be there, which is a 3000% increase from what should be in there.

The presentation of Congenital Neuroproliferative Vestibulodynia is such that it presents as a burning, cutting, raw, searing, "hot knife" kind of pain. 

So what are my options now? 

There are three (the first two are akin to bandaids; only the third one actually solves the issue):

1) Systemic 
2) Topical
3) Surgical

Systemic: This is where they would have me take anti-depressants or anti-seizure medications, not for those illnesses, since I don't have them, but because they dull nerve endings. They can also have me take SRRIs. Side effects of all these medications are very serious (weight gain, nausea, intense sleepiness, lack of clarity of thought/ dulling of thought etc). Moreover, they do not work very well.

Topical: He can prescribe me LIDOCAINE which is a numbing ointment. I apply it topically to the area and wait 20 minutes before having penetrative sex. For some people, this works well. Problems with this are a) it wears off after a time (it will not always be so effective at numbing you out) b) sometimes it can start numbing your husband, too, which makes him lose his erection and c) there can never be any spontaneity to your sex life because you always have to apply this first. 

Alternatively, he can prescribe me CAPSAICIN which is the extract of chili peppers. The idea is that I would apply it topically which would cause ALL my nerve endings to fire at once, releasing Substance P. I would do this daily for months and basically be wearing the nerve endings down. After consistently making the nerve endings fire over and over again they get tired of doing it. So then I would need to apply it (if I understood him correctly, I'm not sure) at least twice a week for the rest of my life, because if I stop applying it, then the nerve endings go back to being full strength. This is the best non-surgical option because women who do this can get 70% relief for the most part. HOWEVER he does not really recommend it for me because it's basically causing all my nerve endings to fire full strength which means I would be in excruciating pain each time I put it on, especially at the beginning. He says in the end of the day it is up to me, but most women who try it call him up the next day and say "Dr. Goldstein, are you crazy?"

Surgical: I would have a surgery called a vestibulectomy where they basically remove very superficial layer of skin plus the nerve endings there, and replace it with the skin already in my vagina that does not feel pain (aka all the skin outside of Hart's Line). You can look of all the graphics and instructions of the surgery here (but ignore the pictures of hooks; they don't do it with hooks- med students hold it open instead) - also be aware that the graphic is kind of cartoon-y, and that you do not have such a large opening as it seems there. Your opening is normal-sized. They suture it up and I have 6 weeks of recovery time, with 3 weeks of absolutely not being able to go into work. I have to work with dilators to re-stretch the area afterwards, and while I won't feel this kind of pain, I will feel soreness (so a different kind of pain). The surgery is an outpatient procedure. Typically, hospital fees cost $3000. Dr. Goldstein's fee is $9000. He says that you WILL need to fight with your insurance to try to get this covered, and that people have successfully been able to recover up to 2/3 ($6500) back. However, this is with a lot of intense fighting, writing letters on legal stationary etc. Dr. Goldstein is happy to do a Peer-to-Peer Review if we can succeed in getting a doctor on the phone at the insurance company to explain a) why this surgery needs to be done and b) why he is the man to do the surgery. 

In terms of the surgery, there are mixed results. But in short, the vast majority of women experience real relief. The ones who still experience moderate pain are also the women who did not do the dilators nightly after having the surgery.

If I do the surgery, it should be with him. He has done 415 of them or so, and has had other researchers/ people who are not part of his department follow up with 215 women to find out how they fared. 207 of the women are now 100% better and can have pain-free sex. He advocates for my doing the surgery with him vs. anyone else because the devil is in the details and he has done the 2nd-most of these surgeries in the world (the only person who has done more of them than him is Dr. Jacob Bornstein in Israel).

If I want a second opinion to examine me, here are doctors he recommends:

1) Richard Marvel in Annapolis
2) Susan Kellogg in Philadelphia
3) David Foster in Rochester, NY
4) Irwin Goldstein in San Diego
5) Lara Burrows in Akron/DC (but she is also Dr. Goldstein's associate)

In terms of contraception, I should not go on birth control pills (especially if I plan to do the surgery) because the tissue needs to stay as healthy as possible. I cannot get a diaphragm inserted because it will be physically way too painful for me to put in (he thinks) and the same applies to an IUD. So I'm pretty much out of luck with contraception (if I don't do the surgery) unless a rabbi wants to give me a heter for condoms. 


Anonymous said...

Sigh. Good grief. I get really depressed when I have medical problems, and reading this post depressed me. It's just a lot to think about. Sad when your body doesn't work!! Will definitely pray that G-d provide the money you need for the surgery, time off from work, etc, and a full recovery. Will also pray for your emotions and patience. Such a rollercoaster! --YCF

Anonymous said...

there is spermicidal foams that are used which is hallachaclly better than condoms

Anonymous said...

I went through almost the exact same experience as you. I was about to go through with the surgery with Dr. Goldstein and for a few reasons, ended up not going through with it. Soon after I got pregnant with my first baby and after the baby was born, I had significantly less pain (and I was diagnosed with the same exact thing). I guess I got stretched out a lot and the nerves were just not as sensitive anymore. Then I had to work on all the emotions and negativity I had built up towards sex because of the initial problem. Things were good and then I had another baby. After the second was born, pain was all gone. And things only got better.

Anonymous said...

Some questions you might ask the doctor about the surgery:

Why did the researchers follow up with only 215 of the 415 women?

What data can he give you regarding patients of his who were candidates for this surgery but did not end up having it performed?

And, given the comment above, what data does he have about pregnancy and vaginal delivery with this condition and the status of this condition after vaginal delivery?

Also, in addition to making recommendations for second opinions, can he put you in touch with any former patients?

Anonymous said...

I have vestibulodynia too. I was just wondering if you've gone for PT and if it helped at all.

Anonymous said...

REgarding pain reduction after birth: This is definitely not everyone's experience. My friend is a former patient of Dr. Goldstein who had good results (I think she commented as Ms. A or some variant and I also believe she may have messaged you privately) after the surgery. She had a vaginal birth a couple of years before the surgery and in her case it didn't help at all. Obviously, experiences vary a lot...

Anonymous said...

You very well may be able to get a heter for condoms; I personally know one woman who did, and I'm sure there are many other women who have. B'hatzlacha with it.