Devil's Night

I'm currently still on a search for as much information as I can find about the pending investigation into the drug Lupron. Lupron is a drug commonly used to treat prostate cancer in men, and more recently, to treat endometriosis symptoms in women (and men in some cases as well). It works by overstimulating the production of hormones, namely testosterone and estrogen, causing them to stop being produced temporarily.

I fought with insurance companies in 2015 to take Lupron after having a surgery that provided no relief from my pelvic pain. It was the second to last resort treatment that my OBGYN at the time suggested. We didn't want to skip to the last resort, which was having my last remaining ovary removed, because being only 34, it was not the best idea to undergo surgical menopause. I was excited to try my 6 months of Lupron to see if it provided at least a few years of relief. It was highly recommended, with the only side effects being worsening symptoms shortly after the first dose, menopausal symptoms and decrease in calcium. That didn't sound bad compared to the fact that I was living with debilitating pain every day and was beginning to sink into an awful depression.

Three months of fighting with insurance companies and I received my fist of 6 doses May 2015. It was horrible at first. I remember being confined to the couch for a few days wondering if it was worth it. The pain slowly eased up and I returned to work. After my second dose in June 2015, I was ready to seize life again and I was working extra hours preparing for our busy season. I felt great and kept feeling great through October, which marked my last Lupron injection. By the end of October, the pain had returned like it never left and I found myself back in the doctor's office ready for that last resort.

November 2015 was hopefully the month that marked the last of my agony as I had my last ovary removed the day before Thanksgiving.

My relief was still rather short lived. By the end of 2016, I was back in the doctor's office in pain. Fast forward through consultations, more doctors, imaging and, finally, a trip to a specialist. I was scheduled for surgery August 2017. The Lupron and oophorectomy didn't do shit. The endo was still growing.

By May 2018, we came to the conclusion that no matter what, I was in the stubborn tiny tiny percent of women with recurring endometriosis, no matter the treatment. I was OK with that. I had been through 6 months of physical therapy to keep pain from muscle spasms at bay. The recurring pain often triggers nerves and muscles to almost keep sensing pain, even when the source of pain has ben removed. With therapy, I had learned how to strengthen my muscles and how to relieve them when they did get stressed out.

What I have failed to be OK with is the fact that now, along with manageable pelvic pain, I now have joint pain in my shoulders, elbows and legs. I have started on HRT in the form of progesterone, which cannot feed growing endo lesions, so the endo pain has kinda just stayed the same. I have also developed worsening migraines since August and now see a neurologist and am on two medications for migraines. While the migraines have gotten better, the pain spells I get have not. With my migraine in August, I experienced muscle weakness in my right side. I still get it. My ring and pinkie finger on my right hand sometimes go numb. And, actually, this past spring I also had a few episodes that I attributed to back spams. One was when I was in the backyard grilling, I took a step and almost fell. My husband caught me and I chalked it up to being clumsy and not paying attention to my body. The next episode happed within a week. I took a tray of chicken nuggets out of the oven and, in an instant, they flew through the air as I caught myself on the counter. Again, I figured it was a muscle spam and I needed a break.

This weekend I had a bit of an AHA! moment when I read a post about Lupron coming under investigation. When I did a google search, I was astounded to read to many accounts of women who, even years after receiving Lupron injections, were experiencing the same things I am. Migraines, joint pain, muscle weakness, nausea, numbness... The list actually goes on. Read some of the comments here. It's scary.

The whole point I'm getting at is that I may have an idea of where to start with answers. I don't know that I will ever be "better" or what the next step in this journey is, but at least I have a conversation starter with my PCP, specialist, and neurologist. Time to wait and see what's next.