Friday, March 4, 2011

The Botox Decision

Dr. Goldstein has reached a point with me where he's not 100 percent sure of what to do next.  My burning is still around and he normally can eliminate the burning with the estradiol gel.  The next step that he would like to take is Botox injections.  My husband and I are not sure about this for several reasons:

1. Dr. G isn't guaranteeing anything with botox - it's just his best guess as to what might help.

2. And this is the main concern.  Once I get botox, theoretically I should have no pain in the vestibule area for a couple months.  This means that during that time is when my husband and I would really need to get serious about sex and penises inside vaginas.  We are both concerned that the timing with botox might be very important.  What if I get the botox, everything's great physical-wise, but the minute his penis goes inside me I freak out?  I think the fact that I've been very down lately, feeling hopeless, and unhorny and undesireous of sexual acts makes both of us worry that it might be too soon to consider numbing the vagina because maybe the emotions won't be able to take it.  Does that makes sense?

Our therapist made a good point though.  She said that as long as the pain is there, the fear will be there.  And as long as the fear is there, it's highly unlikely that I will get any desire back until it is proven over and over and over again that I can have sex without pain.  She also said, taking sex totally out of the picture, what if getting botox just made the burning go away and nothing else?  Wouldn't it still be worth it?  Well, yeah, I guess so.

This is why we need a therapist.  My husband and I were thinking about it in a sex/no sex way with the botox.  And our ultimate hope in using botox is to be able to have sex pain-free.  But what if we still have sexual issues after the botox (inevitably we will because it won't solve all the mental stuff) but the burning is gone?  I just can't imagine!  It would be so wonderful to not have burning.  I could ride a bike, I could sit for more than an hour, my life would be changed in many very small, but significant ways.

And when I think about it that way, I'm inclined to say yes to Botox.  I mean, how can it hurt?  Will it give me pain free sex?  Who knows.  If it does give me pain free sex will my emotions be able to handle it and will I get my libido back?  Who knows.  Will it cure the burning?  Who knows.  Is it worth a try?  I think so.

Any thoughts?  Anyone with Botox experience?


Elaine said...

I was to the point of considering Botox when I had my surgery. I would definitely try it, if I were you. Lot less invasive and less recovery time.

Husband said...

I would say go for it. My wife had it about 4 years ago, I think 3 or 4 rounds of it as part of the original botox testing for this use.

It didn't fix the problem 100% but it eased her pain enough for us to be able to have sex for the first time after the birth of our first child. From what I have heard (from Dr. G) they have increased the dosage a lot since the initial tests so your results could be better. Prior to the shots there was no way we could even do any type of contact, where after the shots we could have intercourse with some pain. Not ideal but it was the first step in the right direction. If we would have had my wife off of birth control and on the cream I think it would have been much better. At that point we didn't know about the damage that was done by the low hormone levels just that her muscles were all messed up. So again your results may vary, but it is worth a shot, sorry poor play on words.

Anonymous said...

There is an article that just came out about the use of botox for vestibulitis. Google search "vulvodynia" then go to "news." Very interesting.

Anonymous said...

Keep in mind that botox may work if your pain is due to muscle spasm since botox temporarily paralyzes the muscle to which it is injected. I mention this only because I had a botox injection with Dr. Goldstein and I really felt that he misled me (i.e. he made botox seem like a cure-all even though it was totally inappropriate in my case). It really felt like he was trying to make money instead of just helping me. Everything comes with risks, so if you can, it might be worth seeking a second opinion.

Husband said...

I would agree with the second Anonymous, make sure you have the right issue. My wife did have the muscle spasm which is why it helped her. You also have to decide what your goals are in going through the shots.

For us, we wanted kids, and time was moving on and the pain was still there. So for both of our children we did whatever pain treatment was available at the time along with fertility treatments. Which for the second child was the botox. We had about the most clinical conceptions possible. By no means pain free or any fun, but we now have two wonderful children.

The pain was there 5 years before the first child and is still there now 5 years after. Given it is less than it was prior to Dr. G, but it still has a long ways to go to be pain free.

For us, after the first 3 years we have been open to trying just about anything that doesn't have permanent negative risks, with the hopes that at some point we will find the final fix.

Also, just wanted to put a question out there. My wife is on the Valium inserts, and the normal cream that Dr G puts you on. Throughout the month she has times of near no pain that she really enjoys. Which are really only 1 or 2 days a month. Then the rest of the month she has varying levels of low-moderate-high pain. We haven't identified what causes the changes, is anyone else having the same issue?