02 March 2010

Endometriosis Awareness Month

March is Endometriosis Awareness Month. So, I thought I would share my story.

My periods were also bad. Very painful and heavy. During my teens and early 20's, I was told that I would just have to deal with it, and it was normal.

I went on Depo Provera at age 20. Luckily, this helped for years but it also delayed my diagnosis. Depo is often prescribed for endo. When I was 29, my Nurse Practioner (and employer) took me off Depo because I was having break-through bleeding every couple of weeks lasting for two weeks at a time. I went back on Oral Birth Control and ended up have recurrent yeast infections for 6 months and severe abdominal and low back pain with my peroids. So, we decided to go off everything. My peroids got extremely heavy, frequent (every 21 days) and painful. She suspected at that time, that I had endometriosis. I had health insurance but not great coverage. I was also living in the US Virgin Islands at that time and the healthcare there is not great. The only way to diagnose endometriosis is by a surgical procedure called a laporoscopy.

Well, not being on any birth control, I ended up getting pregnant. This bought me a couple years of being pain free. Pregnancy put endo in remission and I also nursed my daughter for 18 months. I was also back on Depo Provera.

When my marriage fell apart, I returned to the states and went off the Depo Provera again. (it is now known that Depro increases your chances of bone loss so they do not let you stay on it more than a few years now). I went back on the pill and all my symptoms came back. This time, I was having constant pain, not just when I was getting my peroids. My Primary Care doctor suspected endo. I told her that my old practioner had thought that also, so she refered me to a GYN. We scheduled a lap in Nov 2006 and the diagnosis was confirmed and the visible endo was lasered. Within a month, my pain was back. My GYN told me that he was suspecting that I also had a condition called Adenomysis which is similar to endo but the endometrial tissue grows inside the uterine muscle and cause the uterus to grow enlarged. He was suspecting that this was causing a lot of my pain. They only cure for Adenomyosis is a hysteretomy. I wanted to get this done but my empolyer would not give the time off. Because of the endo and adeno effecting my immune system, I was getting sick all the time and had be missing work. Because it was a small business, they did not have to follow the laws of the FMLA. In February, I contracted a virsus and had dime size lesions on my throat and I ended up missing a week of work which lead to me being terminated. Luckily, I documented everything was still able to get unemployment and get on Medicaid. So I ended up having a hysterectomy in April of 2007. My Gyn ended up having to do it abdominally so that they could do a bi-section of the uterus to confirm the diagnosis of Adenomyosis. Also, my uterus and cervix were adhered to my bladder and my ovaries had endo and adhesions which were removed. I did talk my doctor into letting my keep my ovaries on the condition that if I had further problems, we would remove them.

I was pain free for almost a year and the pain was back. Not a bad as before at first but then I ended up in the ER. They did a ultrasound and found a 3cm endometrioma(chocolate cyst) on the right ovary and a 3cm cyst on the left. We did not know for sure that this is what they were, just that there was a mass on my right so I had an ovarian cancer scare.

When I had surgery to remove my ovaries in April 2008. There were again adhesions.

The pain was gone but then I had to deal with surgical menopause. NOT FUN. Hot flashes all the time, weight gain with celulite, mood swings and no HRT because of the history of endo. I made 8 months and pain came back. In Dec of 2008, I had surgery to remove more adhesions. The surgeon did not see any endo, so we decided to try HRT. In Aug of 2009 the pain returned. It has progressed to the point that I am talking daily narcotics to control the pain. They are suspecting either more adhesions or recurrence of endo. They will not do surgery on me again unless I have a bowell obstruction because surgery causes adhesions. I went of the HRT to see if they pain will be reduced. That was over 2 months ago, and had not seemed to make a difference. So right now, it is pain management. I can function on the pain killers most days and am hoping that the pain doesn't get worse.

Endometriosis and Adenomyosis are not fatal but they do not know what causes them and there is not any known cure. These aweful diseases greatly diminish quality of life for many of the sufferers. I am lucky that I was able to have a child because that is not always the case. For many women, it causes infilitity issues.

I am thankful every day that my pain is managable and that I have great friends and family I can lean on.

I am participating in a study to to and isolate the gene that may make people more likely to develope endo. They this there might be some genetic predisposition but that it is probably causes by enviromental factors, such as dioxins and other chemicals. This is one of the reasons why I try to eat organic and non-processed foods as much as possible and use natural cleaners. Hopefully one day, there will be a cure.

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