Monday, January 29, 2007

More thoughts on ENDO

In the language of the iVillage message boards I have started reading on the recommendation of my SIL, AF arrived today with the expected discomfort. I've been on Aleve and glued to a hot pad all day with periods of nausea that come and go. I thought I could get some work done today, but didn't have the patience to monkey around with spreadsheets.

Earlier this morning I felt better at one point and got out my laptop to download the latest surveymonkey data in the hopes that enough people participated over the weekend to fill up a cell I still need participants for. I got as far as requesting the data so that I can download it when surveymonkey makes it available. It can take them anywhere from a day or two to 15 minutes to make it available for me to download. It takes me an afternoon to get it all into SPSS depending on the number of people.

I was just about to check back with surveymonkey when I got inundated with phone calls. First my mom (who is normally absentee mom) called to tell me she found the perfect post-surgery outfit. I have been looking for something ultra-comfortable around the waist because the gas they pump in for the surgery is decidedly uncomfortable according to everyone who has had the procedure. Then my SIL called just to say hi and pass on warm thoughts. I called the kennel to get the doggy hotel squared away; in haste I reserved their kennel stay for the day of the surgery and the day Mr. Sleyed needs to get back to work, totally forgetting that we are leaving early so I don't have to do the day-before-surgery prep in the car. I have to totally void my digestive system, to put it delicately. I can't eat anything that day either.... so, we are leaving early so that whole business can happen at my home away from home during the lap experience. Fortunately the kennel had space and I was able to straighten out the problem with over-vaccinating our dogs for kennel cough.

Finally I was on the horn to find out how much it will cost us to get the bloodwork done that my FBCD (fancy big city doc) wants me to get done to find out if my hormone levels will allow me to conceive and sustain a pregnancy. Insurance won't cover the tests because they don't cover any infertility diagnosis or treatment. Rat bastards! It's absolutely assinine that they are allowed to get away with that at the same time they cover insanely expensive end-of-life care and conditions people earn through bad habits. Some states actually have passed laws to make insurance companies cover infertility treatments if they provide pregnancy care. Unfortunately WA is not one of those states. My former state of MT is. Weird. This list identifies states with mandated infertility coverage. The cost of the bloodwork is $420.

I would be surprised if they revealed anything abnormal, but I suppose he wants to know the results so that he can help me figure out what the best post-op treatment will be. Getting pregnant is one approach, but if I can't do that w/o some form of treatment (who knows the cost of that???) then I may have to go on BCPs until I go through menopause. Endo isn't something that can go untreated. If BCPs don't work I may have to take Lupron which gives you menopause and all of the side effects early. I don't want to become a She-Man in my early thirties !@&^% Yuck. If I am unlikely to get pregnant according to the tests, and the cost of treatment to try to get me pregnant is too much, well, then I will have to keep my fingers crossed that BCPs will keep my endo from getting worse and also get used to the idea of only ever having fur kids.

With my time spent laid up today I searched blogger for people who have endo and have had or will have laparoscopic surgery. I have found and read quite a few so I know what to expect. This story of one woman's laparoscopy was the most informative. If you want to know what will be happening to me in a few weeks, check it out.

Unfortunately I also read a lot of stories about people never being able to conceive even after the surgery. And - to make me really worry - quite a few have had more than one laparscopy. One even had more than TEN! Zounds! Why? The endo aggressively comes back even after it's surgically removed, and adhesions (scar tissue) forms where the endo was cut/burned away. That can actually make pain worse. So....

Now I am feeling like there is a chance that this surgery may actually make my pain much, much worse in time, and I will have to have another lap to get rid of the pain. Sheeeesh!

Maybe I should call Ruth (who is incidentally a gyno) so she is actually Dr. Ruth, just not the Dr. Ruth.

The BEST thing that happened today -- I received a card in the mail today from my dissertation advisor. There's a chimp holding a beach ball and wishing me well with my surgery on the front, and inside a hopeful messgae about being well enough to get back to monkeying around again soon. It was really so sweet and unexpected that I actually felt some regret for all of the times I complained about her being a horrible advisor. She really came through, in a small albeit symbolic way.


Rose Connors said...

I hear what you're talking about. No infertility coverage in Oregon either. I've been trying all the herbal supplements that might help with the pain with no luck so far. Loose sweats and a day and a half in bed were all I needed after the lap. My monthly pain was much worse. Good luck.

M said...

I sent you an email too but my advice is: figure out what benefit you'll get in the best case scenario with the surgery. Is it just two days per month without pain? If so, is that worth possible adhesions that can be more painful and difficult to get rid of if it's even possible at all? I'm stuck with adhesions and not happy about it and my surgery didn't get me anywhere. To me it was worth it to try because I have daily pain, and the pain was disabling. You should think about which way you have more to lose, because maybe your surgery will help but think about the worst case scenario too and how you'll feel if it makes think worse. I wish you the best of luck either way.