Tuesday, April 24, 2012

Misdiagnosis

I am SO THRILLED right now.

I am super thrilled. You know why I'm thrilled? Because everything that has been happening to me is all due to a MISDIAGNOSIS.

I don't have vaginismus. 


I have vestibulodynia (which is a symptom, not a diagnosis- we'll get to the diagnosis later on).

I found this out today when I met with the esteemed and renowned Dr. Andrew Goldstein of the Center for Vulvovaginal Disorders in Washington, DC.

Someone called 'Missing Out' emailed me about Dr. Goldstein all the way back on December 28, 2011 but I just bypassed it back then. Then someone else posted a clip of ABC news talking about Dr. Goldstein and his knowledge of vulvovaginal disorders. All things considered, I finally decided to check him out. I should have gone to him a lot sooner than this- in fact, I should have gone to him before going anywhere else (and this will be my new recommendation to everybody).

Here's how his office works: You fill out a seven-page questionnaire about your pain and everything you are experiencing. You bring this with you to your first appointment. At the first appointment they take a urine sample (to check if you have yeast infections or anything else), blood (to check if you have hormonal imbalances or anything else), speak with you for a long time and also do a thorough medical/ internal exam.

I started out simply talking to Dr. Goldstein about everything I had tried thus far and how I had been told to use the dilators, had tried pelvic floor therapy and I still always had pain. Just looking at my descriptions of pain on the sheet before even examining me, he told me he was skeptical that I had vaginismus. Nevertheless, he would wait till the internal exam to determine that for sure. After talking everything through, we went to the exam room.

I got up on the chair (it was a regular chair like you might have in a gynecologists office, except the place to rest your feet were lined with fur so they were comfortable). The really cool thing is that he hooks you up to a camera so that you can see everything he is doing or touching on a large screen while he does it, so that I could follow along with him. Before he even started looking at my vulva and vagina, though, he tapped on my stomach and asked me if I felt any pain or just pressure. I said pressure and that it was ticklish. Then he took a Q-tip and touched my bellybutton and asked if it was sensitive. I said it was. That's when he moved on to the vulva.

With his Q-tip, he swabbed the mons pubis, clitoris, labia minora, labia majora, perineum etc and asked me if I felt any pain at all. I said no. Then we got to this dividing line inside of the small lips/ labia minora which is called Hart's Line. When he was outside of the line just touching the labia minora. As soon as he was inside of it with the Q-tip I was tensing up and in a lot of pain- and that was just with a Q-tip!

We soon discovered that this entire area was causing me pain. This area is called the vestibule. However, when he would insert his finger through the hymen to the vagina and thrust it in and out, everything was great. There were no problems whatsoever- I felt no pain. It was only when he was touching the vestibule that I felt the pain.

He then had to spray the entire vaginal area with vinegar because that would turn problematic areas white, but nothing turned white so I don't have those sorts of diseases, which is good.

Then he took me back to his office (after I had gotten dressed) and walked me through the following explanation. He showed me this picture:

Please click it to zoom in. The purple part is the part where I have pain- called the vestibule. What I have is therefore called vestibulodynia. The thing is, that is only a symptom, not a diagnosis. It's like if someone were to have chest pain. That could mean any number of things- not just a heart attack.

He also explained the origins of the word. Odyne is the Greek goddess of pain. Dynia thus means abnormal pain response. And vestibule is the part that is having the abnormal pain response.

There are a dozen different causes of pain in the vestibule (he goes into depth about them here if you scroll down, but I am going to go down the list he gave me in terms of my personal pain).

1. Atrophy- Thinning due to decreased estrogen and testosterone because of taking oral contraceptives. The one I am on, Yasmin, is the worst for causing this.

2. Tight pelvic floor, also called vaginismus- I do not have this. This is because if I DID have this, I would only be having pain in the lower part of my vestibule, but in fact I have pain in the entire vestibule.

3. Congenital Neuroproliferate Vestibulodynia- You are born with too many nerve endings in this area. Some women have up to 30x (3000%) the normal number of nerve endings. The types of pain that I was describing- burning, cutting feeling like a 'hot knife' is associated with this diagnosis. Hypersensitivity of the belly button is also linked to this, because the same tissue that comprises the vestibule is the tissue left over in the belly button.

4-9. Dermatologic conditions - I don't have these which he can tell because he did the vulvoscopy with the vinegar today.

10-12. Vaginitis- some kind of inflammation or infection- I don't have this either.

The thought is that either I have #1- the atrophy and thinning because of the birth control pills that I am on- or #3 - the congenital neuroproliferate vestibulodynia where I have too many nerve endings there because I was born this way.

The Treatment


I need to stop taking birth control pills and need to apply a special estrogen/ testosterone cream that he prescribed to me twice daily over the entire vestibule, digging deep into all the nooks and crannies (so it is going to hurt). Then, in three months, he will reevaluate me to see how much pain remains. If we are lucky, it will all be gone and I will just need to find a new contraceptive method.

If the pain is NOT gone (and he suspects it will not be due to my description of it, the fact that I haven't been married or on birth control pills for very long and because my belly button is sensitive), then we will have to consider a surgery called a vestibulectomy that will have to remove some of the nerve endings from that area. Of course, ideally we are hoping that just taking me off the birth control pills will make all the difference.

I talked to the doctor about women in the Orthodox community in general. A prominent Hasidic Rebbe actually sends all women who are experiencing painful sex directly to Dr. Goldstein, and apparently Dr. Goldstein has also worked alongside Talli Rosenbaum and he has given speeches and lectures in Israel on this topic to very Charedi crowds. He says that most times when Orthodox women think they have vaginismus, they really don't and it is a misdiagnosis. In contrast, he has seen a prevalence of Indian women presenting with real vaginismus.

He also said that if I can get together qualified people in New York who would like to learn from him about different types of sexual pain, disorders and potential treatments, he would be happy to speak about it (which is awesome).

He also gave me a free copy of his book, which is AWESOME (and really helpful at explaining everything). It is called 'When Sex Hurts: A Woman's Guide to Banishing Sexual Pain.' If you are in the same boat as me, you MUST MUST MUST read it and own it. It is so helpful.

I also learned from the doctor that there is an International Society for the Study of Women's Sexual Health, which he is part of. Who knew?

I am just SO HAPPY because he stressed to me that my anxiety is not what caused this or brought this on, this is not a psychological issue, this is not in my head and this does not reflect the fact that I don't care about my husband or anything like that. It is purely a medical issue. And it is treatable.

I'm so happy!


19 comments:

Anonymous said...

good luck!

Anonymous said...

OMG, this is so exciting. I hope it all works out.

Anonymous said...

Ditto Anonymous 6:10pm! Hooray!!!!! Can't wait for this blog to go belly up because you're too busy having sex all day to post!

And good for you for even visiting the doctor. You seemed so discouraged recently, and a lot of people wouldn't have bothered.
--YCF

Abandoning Eden said...

please get a second opinion before having any sort of surgery

Anonymous said...

Wow! I am glad for you! I was just about to give you some advice regarding your issue,lol.

It's great to find out when something is wrong and how to diagnose it.

Anonymous said...

Mazel tov!

Today is as joyous as your wedding day, because now you are finally armed with the tools and information to be able to make love together for the long haul. I really hope everything goes well in your treatment and cure:)

Anonymous said...

My friend had the vestibulectomy. She tried everything before, even managed to get pregnant when her husband got only halfway in, but nothing worked. After the surgery, which itself was not fun, she says everything has been great. I don't know details, but if you want, I can ask her if she can somehow get in touch with you.

C. G.

agirl said...

CG is the one who is my friend. I emailed you, ask me any questions that you have. But I used Dr Goldstein and he is wonderful.
Stay away from sex until he fixes it, and its important you bring your husband with you when you see Dr G so he understands more about it. Dr G is the best surgeon in the USA for this type of surgery dont let anyone else touch you. He is pricey but well worth it!

Anonymous said...

This is such great news! I'm so excited for you. Good luck!

Anonymous said...

WOOOOOOOOOOOOOOOT!!!!!!!!!!!

-Meira

mrschupchake said...

Coming out of the wood work to wish you all the best.

Adina said...

I am extremely surprised that no other doctor realized you had vestibulodynia. That is not a very complicated diagnosis. You just need to look at your vestibule. As a pelvic floor therapist myself, I often perform q-tip tests as step one in order to first rule out vestibulodynia. The other shock is that no one has taken you off yasmin before- that is the other fist question I always ask my patients. A common treatment for vestibulodynia -before rushing to surgery is first an estrogen cream and if that doesnt work then using a lidocane numbing cream around the vestibule. You can also ice the vestibule before and after sex. I wish you good luck in the future- I am still in utter shock that all the doctors and therapists u went to didn't figure that one out- its not brain surgery!

Anonymous said...

First of all , I'd like to say how much I admire you for writing this blog.

Before you have an operation, you should look into taking medication. I have something similar- vulvodynia. It's caused by extra nerve endings inside the vagina. I tried the cream and it didn't help at all. I did physiotherapy which helped a bit. But what made a BIG difference was taking amitripyltine. It's an anti depressant (which scared me) but taking a low dosage (20- 30 mg) is often proscribed for migraines and for vulvodynia, since this medication affects the nerve
endings. For me it baruch hashem really worked!

Missing Out said...

I'm glad that you finally followed up on my suggestion to get in touch with Dr. Goldstein. He cured my wife with the surgery.

Just a warning - the surgery is really tough. You really can't move for a few weeks after, and the therapy takes a while. But it is worth it, because at the end you will be cured!

Anonymous said...

I'm so glad you found someone who figured this out. I mentioned going off BC pills in a comment on your last post. I'm also surprised that this was not brought up earlier as they can contribute to a variety of sexual dysfunctions - all likely unreported in prevalence.

Anonymous said...

Please update us!
I keep checking to see if the new information helped!

Chag sameach!

agirl said...

I am really happy that you ended up seeing Dr Goldstein. He is a wonderful doctor and an amazing person. I had the congenital defect form. And I did do the surgery with him but I did the surgery in DC. And now I am happy to say I am currently pain free. And the proud mom to a new baby girl.
If you have questions about the surgery which seems inevitable let me know.
A

Anonymous said...

I'm really happy to hear that you finally have a solid diagnosis! I hope that everything goes well and that one of the treatments is successful. I, myself, have only just begun to enjoy sex with my husband, 5 years and 1 baby after our marriage. So I'm incredibly glad you haven't given up and that you're making progress. :)

Nichole Mercado said...

Well I'm glad that you haven't started with any Vaginismus treatment yet because that could pose some serious problems, and may even make your current condition worse. My friend, who's an assistant to an arizona personal injury lawyer, tells me story about Misdiagnosed cases handled by their firm. Most cases were due to medicine side effects which made their disease worse because of misdiagnosis.