My Lupron Endometriosis Nightmare
It was my 26th birthday. My boyfriend and I were entangled in an intimate moment, when I felt my body seize in an all too familiar pain. My body tensed up, forcing me to launch into fetal position and kick my boyfriend halfway across the room. As he looked at me in complete and total shock, I realized, ‘It’s back’, and curled up in a ball crying.
I had my first excision surgery for endometriosis when I was 24, and hadn’t given much thought to my endometriosis growing back before that episode. Due to a change in insurance, I was forced to see a new gynecologist. Scared and in pain, I did what I thought was right, what any inexperienced patient would do, and put my body, future, and pain management all in her hands.
The Lupron Journey Begins – How Bad Can it Be?
Having previously exhausted every birth control measure, I assumed a second surgery was in order. Instead, she suggested Lupron. Things were different then; the online health-space was mid-development and there were barely any resources dedicated to helping women like me. At the time I thought, “She’s the doctor, she knows better than I do, and even though it sounds awful; how bad could it be?”
The answer was bad, worse then I could have even imagined. Almost immediately, I had awful reactions at the injection sites. My skin became hot and sore, making it hard for me, a preschool teacher, to move around or even sit. I spent days sitting on ice packs, pillows, and heating pads.
Maybe Lupron Does Work
I’ll admit for the first few months I felt better, and I even thought “Wow! What a miracle drug!” I started running again, I was working more and going out with my friends more. I even participated in a 5K for charity. Even my libido was unaffected, actually it went through the roof. I was back on top, despite the school nurse having to see my rear end once a month.
Maybe Not – Lupron Hell
It wasn’t until about 3-5 months into the treatment that all hell broke loose. My Lupron side effects were off the charts and my pain had returned. I was experiencing hot flashes, night sweats, and a major increase in appetite. Within a few months I had gained 20 pounds. For a slender 5’3″ woman, being over 140 lbs made me feel uncomfortable in my own body. I found myself having awful mood swings, and bouts of depression; my memory was incredibly foggy, prompting my boss to comment that I often seemed in a daze. I was having migraines and insomnia. Even with Add-back therapy, I suffered immensely.
I wanted to scream at my doctor for ever putting me on this drug. Despite being miserable and wanting out, I was forced to stay on it for 12 months (twice the recommended time). This also wasn’t a doctor in the middle of nowhere, but rather one of Time Magazine’s best doctors, associated with one of New York’s best hospitals. I assumed I must be in good hands, and needed to follow her recommendation. However, my doctors felt a successful patient was one who got pregnant. Although I was a 26 year-old, broke preschool teacher with no immediate plans about having children, it seemed this fact had slipped their minds, along with any concern as to my quality of life; or rather lack there of. Thankfully a second opinion from another specialist gave me the courage to advocate for myself, and to demand to be taken off the drug and given other treatment options, of which I was originally told there were none.
Long Term Side Effects of Lupron
I still have lasting side effects from Lupron. My ovary is enlarged, and ovulation is excruciating. I continue to suffer from night sweats, memory loss, and weight gain. I feel as if l poisoned myself for 12 months.
Now, 4 years later, I have an excision specialist and a diagnosis of deep infiltrating endometriosis, which has required two additional surgeries. Even though I still have pain, I am confident that I have doctors who care about me and will listen when I say I’m in pain, or when I’m not interested in a treatment. If you feel like you know more than your doctor or they’re not listening; then its time to leave.
From Patient to Patient Advocate: The Birth of Endo Warriors
I have used my pain and frustration to co-found an endometriosis organization called Endo Warriors (links below) to help give support and resources to women with endometriosis.
I am writing this article because I want women to know that this drug is not helpful for women with Endo. Lupron was meant for men with prostate cancer and not for women suffering from endometriosis. It does nothing to shrink the disease or for pain management, and in turn makes us sicker. I had little to no issue with my ovaries before and now I have transient cysts, an enlarged right ovary, and excruciating pain with ovulation. This drug is dangerous and it’s not being used correctly. We need treatments that help; we need a cure, not this poison. We need doctors who care! It’s time for us to stand up and shout, “You can’t do this to us anymore!”
What makes me angry is that some doctors refer to this drug as a cure, others as “your only option” when clearly it isn’t. Many women can use it effectively if surgery was not effective, but at what cost? Is the risk of ovarian function worth it? Are the lasting side effects worth it? Doctors need to be honest with their patients and give them resources so we can make better informed decisions about our treatment. Since that doesn’t always happen, I hope everyone learned a thing or two from my cautionary tale. I’m not saying don’t take Lupron, because it might be the right treatment for you. I’m saying that I don’t trust the drug or the research behind it. I believe it was the wrong treatment for me and probably is for many, many other endometriosis patients.
Information about Endo Warriors
If you are battling endometriosis and would like support from other Endo Warriors please contact us:
Twitter- @endowarriors and @jillybean126
Participate in Research
Hormones MatterTM is conducting research on the side effects and adverse events associated with Lupron. If you have taken Lupron, please take this important survey. The Lupron Side Effects Survey.
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