A Bit Premature

Well it appears our excitement was a bit premature.  After two really good session in the bedroom the pain was back.  Given my wife has not been taking very good care of herself.  She has been under a lot of stress and has not been getting much sleep.  So we are going to get a bit more strict on the diet as she started to migrate off of the no sugar, no yeast, no fun food… to a more moderate diet, and we are going to try and get her more sleep but there isn’t much we can do about the stress as she is in the financial sector and as you all know that is an absolute mess. 

So we aren’t sure which of the items is causing the problem but hopefully it is one of them and not that the solution has avoided us yet again and did the ha ha in your face you were 100% better for two days and only two days, see you at the drawing board.

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.

On the right track and almost there?

Lets start out with we have started to notice that all the PT and DR G recommend work has been making things go better.  Last Sunday we had really good sex that fell into the somewhat rigorous category and my wife was only sore after her climax, vs the normal sore for hours after.  So all and all it seamed like a really good night.

Jump to today, she had her 4th Dr G appointment and from the brief phone debrifing I got from her as she traveled to the airport it sounds like things went really well.  Dr G said that everything is looking really good and that, as my wife put it, he worked her over pretty good and there wasn't much pain.  He did diagnose her with an ongoing yeast infection.  It is a mild one (so mild my wife didn't even really notice it) but he has treated her in the past for it and it keeps coming back.  He said that this is common for people with her condition but he feels that the infection is what has been keeping her from completely healing up.  So he is putting her on a crazy long treatment for it that should wipe it out, also a diet modification.  But he also told her that this should resolve everything and that he believes this will be the last time he see's her.  I don't know that I believe that to be true yet, but at this point I am very optimistic as he has taken her from barely being able to sit and screaming at the thought of being touched to being able to have somewhat pleasurable sex again.  So if he can get the remaining pain to go away with this final treatment then I will be more than happy to have this be a very short term blog.

The Response

Well it has been a long time since I last posted.  So here is the update.  Dr G was speechless at the recommendations of the local doc's/specialists as he put it when he got to the point of having words is that the meds that they wanted to put my wife on are the same type that caused the pain in the first place, which to say the least he thought was a very bad idea.

On the plus side on my wife's last PT session her PT said that her tissue looks the best it has in the entire time she has been seeing my wife and she was able to increase the intensity of the exercises she has my wife doing.

On the down side my wife's pain level's have been up again before and after her period.  At this point I don't really like the idea of having the burn up the uterus surgery as I just don't know for sure that we are done having kids and the surgery is a very final decision on that option, not to mention there is not a guarantee that it will help just a chance it will.

So it has been a bit of a down month, I just try and remember that we are so much better off than we were in the past, but it is always hard when there is some regression in healing.

Anyway my wife is off to her next Dr G visit next week and it will be interesting to hear what his prognosis is and what he thinks the next step should be.

Also a question out there for those of you reading this, how do you cope with the differences in sexual desire/needs between you and your partner?

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.