Tuesday, July 16, 2013

How I Got Here

Sorry this is so long and disjointed.  Wanted to get down as many details as I could remember just in case it might help someone later on.

This all started 2 years ago. Well, it started long before that, but I have no clue when that was.  So we will go with 2 years ago.  May/June time frame of 2011, I was walking upstairs and had a very sharp; double me over, pain on my left side. When I got into our bed I was in the fetal position and in tears.  It lasted about 30 minutes or so, and then subsided.  I continued to be uncomfortable for a while, but no more actual pain.  

Next morning I called local OB/GYN and explained what had happened. Went in, talked to Nurse practitioner.  She said it sounded like a burst cyst.  One thing lead to another, scheduled trans-vaginal ultrasound (let me just say, if you have active ovarian cysts when this is done…holy hell, does it hurt!) they found 2 more cysts. Recheck a few weeks later, one cyst has grown quite a bit.  End up with surgery to remove cysts in November.  I waited that long because I was in school and asked to wait until Thanksgiving break. 

Laparoscopic removal of cysts and left ovary. Discovery of smaller cyst on right ovary, removal of those cysts and the surprise discovery of severe endometriosis. Uterus glued to bowels. Things are all stuck together down there.  Surgeon removed what adhesions she was able to, but would not risk messing with bowels.  

The endo diagnosis shocked the heck out of me, since I really wasn’t that heavy of a bleeder and cramps were manageable.  The only thing I really knew about endo is that a dear friend suffered quite a bit years ago and had to go out of state to a specialist to have surgery.  I wasn’t suffering, so how was my diagnosis “severe”? 

As I started reading more about endo, I learned that some women with severe endo show few to no signs of it. And some women with only a few endo implants have severe pain!  I also discover that I HAD been having symptoms for quite a while and just thought they were sort of normal and age related, like consistency of flow and lots of clotting.  But the most obvious and most painful sign was bowel related. Like clockwork, on the third day of my period I would have severe intestinal cramping and rectal pressure. I would FEEL like I had to go to the bathroom, but nothing would happen. I just figured I was constipated and dealt with it. Only lasted a couple hours one day a month. I just figured it was part of the deal. 

Then, starting shortly after the first of this year (2013), that one day a month turned into 2 and then 3 days and eventually, it lasted 2 weeks. I was taking 800 mg advil every 6 hours to stay functional.  I had multiple nights where the pain would wake me up.  Finally, May 2nd I went to see the OB/GYN at the local office. (This was a new doctor. Original ob surgeon moved practices)  I was not terribly comfortable with his answers. He had suggested surgery, but said he would want me on Lupron for 6 months beforehand.  Researched Lupron and decided very quickly there was no way in hell I would use that.  So, I searched for a 2nd opinion. 

In the interim, I also saw NP regarding mood swings. Hormones were all over the place. If I wasn’t crying I was raging.  I would get so mad that the husband could see my BP go up. My chest would start to get red, then it would move up my face. It was out of control.  NP put my on lowdose BCP.  JunelFE.  Let me say, it worked wonders.  It also turned out to help relieve some of my endo pain.

I found 2nd surgeon. He read the post op notes from first surgery, scheduled more tests and several consultations, came to the same answer, surgery was needed and he felt it best to take out the uterus and remaining ovary. However, he said he refused to use Lupron.  He has not used it in years because of the nasty side effects. (THANK YOU!)  

Hysterectomy was not the answer I was hoping for. Oophorectomy REALLY wasn’t what I wanted to hear.  But after researching and driving myself crazy, I do think this is the best thing for ME.  I certainly pray that it is. 

16 ½ hours to go.

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