Tuesday, September 26, 2017

The experience of endometriosis

How to explain the experience of endometriosis?  It is not a "bad period" or "monthly pain."  It is an all-consuming, life-altering pain that has real impacts on quality of life. It is not simple fatigue, but rather, all-out exhaustion that prevents you from functioning.  It is not simply irregular bleeding, but instead bleeding on more days of the month than not.

Endometriosis intensifies with age. This has certainly been true for me.  Twenty years ago I used to be able to manage my pain with a normal dose of ibuprofen. When that no longer worked, birth control pills worked for a time. When those stopped worked, depo provera was tried. That never worked. In recent years, I have tried Toradol, a prescription NSAID, which also did not work, as well as narcotic pain relievers.  I am very cautious about my use of these because I know that if misused, they can have disastrous consequences.  Also, I find them to cause intense constipation which only exacerbates the pain of endometriosis.

After my laporoscopic surgery last year, my doctor put me onto Lupron.  I suffered through six months of this drug, a nasty injection that causes immediate chemical menopause. In my case, it also caused suicidal ideation, mood disturbances, and nearly continuous hot flashes. You are limited to six months of Lupron every few years because it depletes calcium stores and decreases bone density. It is a nasty, nasty, drug.

I have been taking continuous birth control pills since last April.  These have exacerbated my hot flashes and mood swings.  They also cause a more or less continuous menstrual period.  I pass large pieces of uterine tissue and blood clots.

I have passed out from pain. I have thrown up from pain.  I regularly experience fevers during ovulation and menstruation.  I alternate shaking with chills and sweating uncontrollably. The only thing that can somewhat soothe my pain is sleeping in a dark, quiet room with a heating pad. This is not all that compatible with being a functioning human being.

On Saturday I was woken up out of a sound sleep with a stabbing pain in my abdomen that continued for hours. It was accompanied by a fever. The pain decreased when my period started for the third time in two weeks.

When I am in pain, I can easily sleep 14-16 hours a day.  This impacts my ability to work and be social.

I know that endometriosis is a progressive disease without a cure. I know that more surgery is likely ahead of me.  I know that even when excised, endometriosis lesions can recur. But I also know that I am putting a lot of hope on my surgery next week.  I will undergo another laporoscopic abdominal surgery where my surgeon will attempt to excise the endometriosis lesions that I have.  I will also undergo a uterine ablation, where the lining of my uterus will be cauterized. Finally, I will have a Mirena IUD placed.  The IUD delivers progesterone locally, which will hopefully decrease the side effects I experience from taking hormones systemically.

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