Thursday, April 14, 2011

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.

Our history as we know it - Child 1 Things Get Worse

At this point my wife was also starting to desire to have our first child.  As luck or the grace of God would have it we did end up finding a gyno that sent my wife to bio-feedback physical therapy.  This combined with fertility treatment allowed us to conceive our first child.  During pregnancy my wife’s pain levels would go up and down, it was really hit or miss.  Sometimes penetration was great, other times oral or manual stimulation worked well.

After our child was born was the worst time ever.  My wife was on progesterone only BC pills, followed by the ring (I don’t remember it’s medical name, but a flexible round ring about the size of a bracelet that is inserted into the vagina and left in there for the month.)   For the next 2.5 years if I even looked in her direction she would scream in pain.  About once or twice a month she would send some affection my way, but even doing something to me would cause her pain as whenever she was aroused she would hurt.

So we then reached a “what now” point.  She wanted a second child, penetration was out of the question, and there wasn’t a gyno around (we moved a lot so we were jumping state to state as this was all going on.) that had any ideas.  While doing some research on the internet we found a Botox study for pelvic pain.  She went through 3 rounds of shots and that loosened her up enough that we were able to have intercourse.  Not fun intercourse, but very clinical, enough that combined with fertility treatment allowed us to get pregnant with our second child.

After the birth of our second child things were a little better, and by a little better I mean better than the low point we were at for the previous 3 years.  We were able to have sex about once every two weeks, if she was on top and I didn’t move much.  So far from ideal, but when dealing with this type of issue you do what you can and are happy for every little bit.  At this point we were both at a psychological low, my wife wanted to quite the Dr search, she felt that no one knew what was wrong and that she was just broken and that is how it was going to be for the rest of her life.  That and financially it isn’t an easy thing to bare either.   Discussions like this isn’t fair to you, you should find a girlfriend on the side and we can just be roommates and raise the kids, and talks like that took place.  I was persistent and faithful, and made her push on with the Dr search, or I should say together we continued the search. 

Our History as We Know it - The start of the pain

So fast forward a few years to early 2001, we took a trip to Colorado and after a normal “romp and play” my wife said, that was odd it “kinda hurt” that time.  This was the start of the next 10 years and counting of a search for a cure.

My wife had reoccurring yeast  infections when she was late teens and early twenties and had been on birth control since she was 16 due to very heavy and irregular periods.  So I’m going to run through all the fun stuff we have tried over the last 10+ years and I’ll try and be quick about it as reading medical history is not a ton of fun, not that anything to do with this issue is any fun either.  So to take care of the yeast infections it was all about over the counter creams which burned, this was just before the oral yeast pill that works great!  We also tried just about every birth control pill on the market to see if she had become intolerant to the one she was on.  We also went to just about every gyno we could find as well a gyno/dermatologist team which took a close look at her tissue.  Everyone said, we don’t see anything wrong you look healthy.  We got some of the it must be in your head statements.  At this point we were becoming desperate, so we even tried alternative medicine (Asian Medicine).  My wife was given what I call a bunch of ingredients for a high end tea, to soak her lady parts in.  Needless to say it didn’t help any, and it wasn’t even some of the really nice smelling tea :-)

To start with my wife’s desire level stayed just as high as it was before the pain, but each time it didn’t feel good she would be disappointed and frustrated.  As time went on she went from multiple times a day to once or twice a week, and each time it hurt the next time she would initiate would be a little further out.  Eventually it got so bad that penetration was barely possible.  While this was going on it is important to note that other forms of stimulation were still pleasurable to my wife it was just the penetration that was painful.

Our history as we know it - Pre Pain

Well here we go, the history of the happy place part 1.   Before you start in you may want to go to the bathroom, grab something to eat and make sure you are in a comfortable chair.  I have broken this huge post into several parts for easier reading.

My wife and I have been together since she was a freshman in college.  We were “one of those couples”, we knew after about ten days of dating that we wanted to get married, we were very happy people.  Throughout the beginning of our marriage we didn’t have any of the pelvic pain issues, actually quite the opposite, we were the mythical newlyweds that couldn’t keep our hands off each other.  As the years went by we were not one of those couples that slowed down, except for a stretch while I was working on my masters and working full time, stress and lack of sleep slowed us down, but not by my wife’s doing.  This was all my fault.  I look back fondly at her statements of “do you think we are falling out of love, is our marriage ok, we haven’t fooled around forever.”  To which I would respond “It is only Wednesday, we did twice on Monday, I think we are doing just fine.”

I spell this out to make the point that we had a very healthy sex life early on in our marriage.

Next post will be the start of the pain.  

Intro to the blogging world


Wow a lot of pressure, my first blog ever.  Several of you have been kind enough to share your stories with me and give advice on the many “my girl parts hurt” blogs.  Some of you have asked if I ever thought of starting my own blog on the topic, being I offer another perspective. 

So on that topic, I’m the husband of a wonderful woman who has been dealing with pelvic pain for over 10 years now.  So I guess my goal for this blog is to share our story, give and get advice from those who ask and offer it, and to share the male perspective.  I cannot guarantee that my male perspective will be the same as the male in your lives, but I will respond to anything sent my way :-)

So there we go, short and to the point, blog #1 done

Husband