One Month Later and Things Going Well

Well I am very cautiously optimistic.  We are 1 month into the DR. G. massive anti-yeast crusade, and last night we had 100% pain free sex for the first time in almost 11+ years.  My wife only had minor pain the next day, but she classified it as very minor.  So all the hormone creams (now down to once a day), off of birth control, PT, stretching, diet modification, and anti-yeast seem to be freeing us from debilitating issues.

My wife has also noticed that she is able to sit for long periods without pain, and her lower back isn't hurting any more.

While I am ecstatic with the current state of things I'm working very hard to not be frustrated with the system and all the Dr's it took to get her to this point.  I think back to just a few months ago when things were taking a little longer with Dr. G than we were wanting and we went for the second opinion.  If we would have went with what the Dr at the U of M had said we would have reset all her progress and never have gotten to where we are today.  I'm also very pissed off at how much money we spent on those Dr's before we got to one who could cure her.

But enough with the negative and focus on where we are, first time of pain free sex in 11 years.

Our history as we know it - Where We Are Today

Now the down side is that we have been stuck at this level, with a couple of areas still in high pain.  So after her second visit to Dr G he added physical therapy to help with the PFD, and then after her third visit he added valium vaginal inserts. 

My wife has high levels of pain in her clitoris area, and moderate pain (4ish) on the upper right and left sides of her labia.  The key area of change is the lower left around to lower right now have mostly no pain, which were areas of 8-10 before.  So some really good progress, I should also mention there have been maybe 3 times of sex in the last 6 months that were zero pain.  Huge win!!!  But the areas in pain currently have not changed, so we have hit a plateau.

At the last visit she had with Dr G they discussed that her highest levels of pain seem to be around her period time.  So he suggested looking into (I don’t know the name) but they basically just blast the uterus with a laser and burn up the tissue so she wouldn’t have a period any more (also no more kids).  So she was to look for a local doc that can do that procedure.

So this week she then met with two local docs, her normal ob/gyn who delivered our second baby and a UofM pelvic pain doc.  Her ob/gyn  said that she thinks the surgery is rather extreme and that she should just consider going on a high dosage estrogen only birth control pill which would give her the extra estrogen she needs and stop her period.  She would also like her to continue the estradiol cream with it.  If that doesn’t work then consider the surgery.  Nice doc, my wife really likes her.

Then the UofM doc, bedside manner left much to be desired.  Very combative right from the start.  She basically said surgery seemed extreme, she liked the idea of the birth control pills, she would also like to switch from the antidepressant to an anti-seizure pill that has shown good results.  She would also like to stop the Estradiol cream and replace with just an estrogen cream, she doesn’t like the testosterone in it.  She then got on her soapbox, which really pissed me off, she told my wife she really needed to go to counseling (something her clinic also has) for this as she will never get better and she needs to learn to deal with the fact that she will have this pain for the rest of her life.

So our next step is to circle back with Dr G and get his feedback on the estrogen BC pill vs the surgery, the antidepressant vs the anti-seizure meds, and if he has any other ideas to reduce the pain in her clitoris and upper left and upper right labia.

So there it is, just a little shorter than the history of the world.  But it brings us up to date with what is currently happening with us.

Our history as we know it - The Never Ending Dr Search

We eventually found a Dr who specializes in PN issues, Dr A for those of you in Minnesota.  He was sure that she had PN and we started the nerve blocks and lifestyle changes to accommodate this condition.  My wife did 6 rounds over 1.5 years.  This yielded maybe 4 times of reduced pain sex and for the most part didn’t really do anything other than cause her discomfort and cost us a lot of money.  At this point our insurance decided to stop covering the shots.  So again we are at the point of what to do next.  When we caught the Nightline or 60 min or whatever show Dr. Goldstein was profiled on.  We procrastinated due to the travel required to get to him, but eventually scheduled an appointment with him.

We went through the initial meeting, which is not fun for anyone with this type of pain.  See “down there” blog for a full recap of what is done.  But once it was done we were told that she didn’t have PN, that she had atrophy and a bunch of other things like PFD, and a bunch of the V disorders.  So she was put on Estradoil, a very low dosage antidepressant for pain management, told no sex for 3 months and her IUD had to be removed.  Dr G’s statement was that the problems were caused by hormonal birth control and that she would be pain free in about six months.  After the first 4 months she was down from pain levels of 8-10 to about 4.  We were pumped, sex was happening on a regular basis of about once to twice a week and she was enjoying it, but with discomfort.