July 2, 2009

• Back in the O.R. again…

  So, tomorrow I turn 34 and today my doctor confirmed yet another major surgery.  I’ve had severe endometriosis for over 10 years now and even had a surgery for it in 2003.  However, over the past year or so my symptoms have drastically worsened and my body has shown signs that something more sinister is happening.  In January I’d starting having symptoms of what I thought was the stomach flu, but turned out to be something that wound up lasting for months on end.  The doctor theorized that it may be leisons in my colon or intestines, but then thought that it might even be shingles when tests ruled out the other theories.  It wasn’t that either, in fact, he never figured out what it was.  Well, as usual I couldn’t just take “I don’t know” as an answer and started to research the symptoms on my own.  I thought about my symptoms and wondered if they could possibly be related to my endometriosis and learned that it was not only possible, but probable.

  I spoke to the doctor about this and wondered if there was any way that my endometriosis was somehow fusing my organs together.  He didn’t think that this was the situation and told me not to worry about that.  So a couple of months went by and the symptoms subsided a bit, but new symptoms appeared.  My menstrual cycles got much more severe and I started developing yeast infections for absolutely not apparent reason…in the middle of my cycle!  So again, I went to the doctor and he gave me meds for the infections and did a pelvic exam but said that he didn’t see anything out of the ordinary.  Again, this was not an acceptable answer for me, so once again I did research on my own.  I learned that the endometrios can cause the infections as well as a lot of other things I’d never known about.  The more I read, the more I thought that my worst fear of the organ fusion could be a real possibility.

  So I finally got into an OBGYN and told her of my fears and symptoms.  She’s a friend’s doctor and was very open minded about it all and sympathized with my situation.  She examined me and stated immediately that I was right about the fusion.  She said that my uterus is for sure fused to the back of my pelvic area and that we won’t know to what extent until they open me up.  She went on to tell me that in my case I should have a full hysterectomy, but there was no way that I can have it vaginally because of the fusion of severe scar tissue, they will have to do an open abdominal incision (hipbone to hipbone).  She ordered an ultrasound and found that I have 5 cysts on my right ovary and that my left ovary is enlarged and inactive.  They also found severe scarring along with evidence of past ruptured cysts and fibroids.

  She put me on progesterone to attempt to stop my cycle until we finished with testing and scheduled surgery.  This has not worked at all, even with having me on double the recommended dosage.  In fact, not only have I still been bleeding, but the pain has been worse than it normally is.  Then, last night I started having severe reactions to the medication (heart palpatations and shortness of breath)…so I’ve stopped taking the drug.  She wanted to have me take a round of Lupron, a new medication that simulated menapause to test how I would react to estrogen supplements, however, this would cost me $700 a shot!  Oh my insurance would cover it, but only after I’d paid the $1500 deductable!  The insurance didn’t see the Lupron as a prescription medication, because it’s a shot it was listed as a medical procedure.  I immediately said that we’re not going that route.  I spoke with doc on Monday and told her that I understand that risks of the surgery and that I don’t feel putting it off for 3 months to test on a medication that is basically going to tell me what I’m going to have to find out anyway is worht it.  This is only going to get worse over time, so time isn’t something I’m willing to waster. This morning her office called me and confirmed the scheduling of my surgery for the end of this month.  The surgery is to last a minimum of 5-6 hours, if there are not complications and will require a minimum 2 night stay in the hospital.  I will then be on 6 weeks of restrictions.

  I have mixed emotions regarding this surgery.  I realize that it’s necessary and may even be life saving as my uterus could be fused to vital organs, but since the last time I had a major surgery I wound up in ICU, I’m a bit nervous.  I’m more worried about my kids and my husband than I am for myself.  They are the ones having to watch me go through all of this again and are scared, especially the kids.  I hate that they have spent so much time with me in the hospital over recent years.  However, I’m certainly not willing to just let this go and risk death either, it’s a double edged sword I suppose.

  In the meantime, I’m trying to enjoy my time with my family before surgery.  My best friend is coming to visit in a couple of weeks, so that will be a welcomed distraction for sure.  In fact, they wanted to schedule my surgery for day he arrives and I said no.  I need to have that time with him before I go through this.  We haven’t seen each other for 2 years now and I need time to just let go and have some fun.

  Dora & I recently took a trip to Michigan (my home state) for my niece’s graduation and to see some old friends.  My brother was quite angry that I was attending his daughter’s graduation, due to the fact that he was not extended an invitation.  This is his own fault by the way and I really don’t feel sorry for him, but I do for my niece.  Although, I’m quite proud of her for standing up to him and taking control of her life.  She certainly was not blessed with wonderful parents, but she turned out strong and very smart in spite of them.

  We had a great time back home and even got to visit my birthplace (Holland) while there.  I’ve posted some pictures from our trip if anyone wants to take a peek.

  Okay, I think I’ve filled the page quite a bit considering I’ve been absent for so long.  I’m exhausted and on painkillers at the moment, so I’m going to retire for the night.

  Tomorrow I will be 34…but I feel as if I’m turning 84.

  • 12:10 am
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