Opinion: Lupron Depot disabled me. Now it’s being sold as a puberty blocker.

Lesbians United member F. shares her experience taking Lupron Depot for endometriosis, and why she opposes the use of GnRH agonists (“puberty blockers”) like Lupron on children.

For nearly two years I took Lupron Depot to manage endometriosis. The endometriosis I experienced wasn’t just painful during menses. I felt debilitating pain in my uterus all month long. The Lupron Depot injections always left me with muscle pain in the injection site, but I believed the pain was worth it to get my life back.

At the time, my doctors didn’t inform me that Lupron Depot was controversial because of the drug’s serious side effects (including bone loss). They never mentioned that it was originally used for men with prostate cancer. Looking back, I wish I had asked more questions of those I trusted to help make me well. By the time my wife and I did start asking questions and doing our research, it was too late.

My last Lupron shot resulted in my body tingling all over, but not in a good way. I became constantly sweaty, my mood was erratic, and my endometrial pain decreased only moderately.

Three months later, while I was working at a local coffee shop, I tried to pour a jug of milk for a customer’s latte when suddenly my right arm seized up in pain. My wrist felt like it was broken and I couldn’t lift my arm anymore. I assumed it was some kind of injury from repeatedly pouring gallons of milk. The next day I woke to my arm not only in tremendous pain, but swollen and tender to the touch. I had to call in sick and find a doctor who could see me right away. I wanted to get back to work as soon as possible. I didn’t realize how bad things were about to get. From that day on, I never worked at that coffee shop again.

The doctor I saw referred me to a sports medicine clinic. At the clinic, the doctor noticed that my left arm was also swollen. The physician had me go through a series of hand and arm strength tests, which resulted in so much pain, I left the office in tears.

At that point I was referred to a rheumatologist. It took over a month to see this specialist. During that time, my condition went from pain and soreness in one arm to pain and soreness in both arms. Then the day came where I couldn’t get out of bed. My legs became riddled with pain, along with my hands, neck, back, hips, and every joint in my body. By the time I finally got in to see the rheumatologist, my entire body was broken down in pain and swelling.

After x-rays and a blood draw, I was diagnosed with rheumatoid arthritis. Three months later, I was diagnosed with fibromyalgia in addition to the RA. Eventually I also began to get migraines. None of these symptoms were related to my endometriosis.

At the same time, my endometriosis was still giving me horrible pain despite the Lupron Depot. A few months after the Rheumatoid Arthritis and Fibromyalgia diagnoses, I had to have a hysterectomy because I couldn’t bear the pain of the endometriosis along with the RA and fibromyalgia. Lupron was supposed to help me have a normal life, including being able to have biological children someday. Now that dream is forever gone.

For two years I lived my life in bed. At times, especially in that first year, my wife had to feed me because the pain in my hands was excruciating and the swelling made my fingers look like giant raisins. Walking was nearly impossible. Due to a lack of exercise and the steroids I was given, I gained 40 pounds. I was put on methotrexate and injectable biologics like Enbrel and Humira.

None of these drugs made much of a difference.

My wife became the sole breadwinner. At times, we struggled financially because she had to stay home often to take care of me or drive me to dozens upon dozens of appointments with specialists and physical therapists. We couldn’t even sleep in the same bed anymore because I sweated so much in my sleep that we would both end up soaked. Needless to say, our romantic life suffered and it was rare we had anything like a date night.

After a while, we began to wonder what had caused my disability. I was too sick to read, so my wife began to do research for both of us. One day she stumbled across a forum where women were discussing endometriosis, Lupron Depot, and rheumatoid arthritis. She read to me account after account of what other women, and even some men, had to say about their experiences of illness after taking Lupron. We had an epiphany. I didn’t just randomly get RA and fibromyalgia. I was bed bound because of the side effects from Lupron Depot. My story was just like that of thousands of other people who have experienced adverse events from taking Lupron. It hurt my heart to know that all this disability could have been prevented. At the same time, we were grateful to have an explanation.

In my second year of illness, I decided that Big Pharma was no longer my friend and set out to heal without invasive pharmaceutical measures. I changed my diet to include lots of organic vegetables and grass-fed meat and dairy products. Instead of pills and injections I took herbal supplements and turned to natural and holistic health practices. My wife and I focused on moving my body a little more every day. Though I still couldn’t wear jeans, needed my wife to dress me, and had to use adaptive equipment just to eat, I was starting to be able to think again. Over the course of that year, I slowly regained some function in my hands, knees, hips, and neck.

Then one day, I put on a pair of pants by myself. Months later I could eat without special equipment. Months after that, finally, I could actually take a walk, sometimes without a cane. Every tiny improvement was a triumph.

It took eight years for me to return to functioning like I did before I took Lupron. For the most part, those dark and pain-filled days are over. It bothers me greatly that modern medicine is still using Lupron Depot to treat any condition. It bothers me even more that children are being given this harmful drug as if it were a quick fix for feeling uncomfortable or not fitting in. I worry we may be sentencing young people to a life of permanent or long-term injury for no good reason.

I hope parents think twice before they allow gender clinicians to give their healthy children such a toxic and controversial drug. Hopefully my story can help more people understand the serious and negative effects of Lupron Depot, and spare their children from its harms.

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Lupron Depot is a depot injection, which is a slow-release form of the drug that acts on the body over the course of months. Its side effects can last for years, and some may be irreversible.

For more information on the effects of Lupron, Lupron Depot, and other GnRH agonists (also known as “puberty blockers”), check out Lesbians United’s free publication Puberty Suppression: Medicine or Malpractice?, available now on our website.