Life with endometriosis just keeps getting more and more interesting all the time. Not only do we have to take interest in the side effects of the "stuff" that we're putting in our body, but we have to also take interest in what happens when the "stuff" fails to work. Yes, interesting indeed.
As the combination of the Arimidex, Mirena IUD and progesterone failed to stop my pain and periods from announcing their arrival, my doctor and I sat down to discuss my treatment options. At the time he said that he would like to try a trial of Lupron. I promptly shot down the suggestion as I just can't take the risk of having any of the potential devastating side effects that may occur. Since my symptoms are mostly manageable and each successive surgery leaves more scar tissue, we agreed that we would put off surgery for as long as possible. I wasn't looking forward to recovery from that anyway. After I broached the topic of SERMS (selective estrogen receptor modulators) for reducing the production of estrogen, we agreed to a 6 week trial of one of them.
During this time, I developed the worst headaches of my life. I have really bad migraines, but this was the "be all and end all" of headaches. I could often be found with my hands pressing on my head to stop it from rolling off. I just assumed that the headaches were related to changes in hormones and changes in the weather, that I didn't really worry about it. Sure I was losing feeling in my arms at times and felt weak, but that's almost "normal" for me. At my 6 week check-in, the doctor feared that if I didn't already have a mini-stroke that I was high-risk for having a stroke if I remained on the SERMS. He also announced that the ultrasound had shown that I have pockets of blood pooling in my uterus, indicating the potential for adenomyosis, or basically endo inside the uterine lining. Due to the endometrial cancer, my doctor did a biopsy to make sure that it wasn't something other than "just blood". Luckily, no sign that the cancer cells are making a nice home in the organ, just on top of it. We changed my medications to a low dose of Danazol in hopes that it would stop the bleeding.
It's been 2 months of Danazol and my periods have still not stopped. In fact, I've had 4 in the last 60 days. I'm hoping that we'll increase the dose and that will be that, after all, in the past I was taking 800-900mgs of the med. I haven't had any too horrible side effects from the med, other than it setting off my fibromyalgia pretty badly.
I go back to the doctor early next week. It couldn't come any quicker as I'm going back to work in a few weeks and need to be at the top of my game. Doesn't anybody else feel like this is a giant roulette wheel that we constantly play? I, for one, am exhausted of the constant spinning.
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4 comments:
Yes, I know all too well the dizzying, nauseating spin of the roulette game. All of our treatment options seem blind tosses of the dice, never knowing if we will find relief, or add to our grief and pain.
I hope your visit to the doctor helps!
Take care.
Hey girl....I feel ya on the wheel that never stops spinning.. I am recovering from laproscopy surgery and my doctor discovered during surgery my blood doesn't clot... like at all. Which opens the door to a whole new window of tests, doctors and possibly meds. Oh joy.
Hello, I'm 26 and 2 years ago they found my endometriosis after many drs and procedures. I am hoping to soon write my first blog about the true ordeal and finding what was causing all the pain. Thank you for sharing your story.
http://loveiseverywhere.blogspot.com/
xoxo
kate
Hi all.
I had endometriosis about 15 years ago, and I was put on a 6 month course of Lupron. It turned me into a raving lunatic. There was a little part of me in a corner of my mind saying, "No! Don't say that or do that!", but I literally could not control myself. I was mean, nasty, aggressive and out of control. I felt I was losing my mind, and the experience taught me how much our hormones do control our behavior. I also did not stop having my period or having pain.
When I complained to my GYN, she told me I was lying, that I could not still be having my period, and that I was drug seeking and not in pain. I had her test my estrogen levels, and it turned out the estrogen levels were those of a "normal" woman, not those of a woman going through Lupron therapy.
Ultimately, unable to deal with the pain any longer, my choices were, "get pregnant or get a hysterectomy." I chose the hysterectomy. They found one ovary had been completely destroyed by the disease, and I only had 10% of the remaining ovary, which they removed.
15 years later, I have terrible problems with adhesions in the lower right quadrant of my abdomen and have had several surgeries to remove them. Eerily, the pain is the same as before I had the hysterectomy, so it almost feels like the surgery was pointless.
The saga of endometriosis is ongoing and may not resolve easily. Even without my uterus and ovaries, the story seems to continue.
Good luck to you, and I hope newer treatments result in a better outcome for you.
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