lupron: the double-edged sword
By: Fela M'tima
FELA: Hey Kirsten, I remember when I first started talking to you over a year ago now, you told me about being on and off Lupron for a bit. What got you to try Lupron?
KRISTEN: Yes, initially I was very hesitant to try Lupron. I had my first surgery January 2015. By July 2015 I was still having pain and heavy bleeding but I tried to put it off and be hopefully ignorant.
I fainted in the store when a cyst burst and that’s when I decided to go back to my doctor.
First we changed my birth control to see if that method worked. It helped with the bleeding but my pain was still very intense. I went back to my doctor and we discussed other options. My doctor felt more comfortable doing a Lupron series than going back in for another surgery so soon. I took a week to do some research and talk to other women who have tried Lupron (I connected with a lot of women via MyEndometriosisTeam.com and Endohope.org and heard their stories) and made the decision to try it.
FELA: As you know, there have been so many articles that bash on Lupron, as well as so many doctors that encourage it. As a woman with Endometriosis, what are your views on these opinions?
KRISTEN: Lupron is a double edged sword. Everyone’s body is different and so everyone will respond differently to Lupron. I have friends that have loved it and those who have hated it. It’s not an easy medication and it’s not an easy choice. Lupron stops your body’s estrogen production in hopes of allowing the endometriosis lesions to heal. You get a crash course into menopause. It’s intense. I think the truth of Lupron hides between both opinions. While Lupron can provide relief to patients many find that the side affects you endure for a six month period do not match the pain relief they received after the 6 month treatment.
Doctors want to recommend it because it isn’t as invasive as a laparoscopy but most of these doctors have also not been on Lupron and experienced the intense side effects. I believe doctors are too quick to recommends something so strenuous on the body and do not fully explain the side effects. Many brush off some of them as well and that is why I think so many women find themselves hating Lupron. You really go from one extreme to another.
FELA: How has being on Lupron helped your life with Endometriosis?
KRISTEN: Lupron gave me a decent amount of pain relief. Before Lupron my pain was on both my left and right side. After my 6 month treatment the pain was only isolated to my left side. I also gained a ton of energy back after completing my treatment.
FELA: I'm so happy you've gotten relief from it. What do you think life would be like without it?
KRISTEN: Without Lupron I would be back on the operating table and in a lot more debt. It was the best decision I could have made at the time. Especially after having an emergency leg surgery in July, Lupron was best for my financial situation and bought me some time to rebuild my bank account and provided adequate pain management.
F: Do you think Lupron is better for specific stages of Endometriosis? For example, maybe a woman with a lower stage of endo would benefit more than a more progressed stage? Or possibly the opposite?
K: I think it depends on your body. I do believe women with lower stages of endometriosis could try Lupron before surgery and see if that helps alleviate their pain. I chose Lupron after my surgery so I was “cleaned out” a bit more. I think that helped me. I know many doctors will do surgery and then also start a Lupron treatment a few months after so the body has an adequate amount of time to heal. It really depends on your body and your endometriosis. It could heal the areas in someone’s body that isn’t causing them pain. So the pain relief might not come but it could have actually helped somewhere inside the body, but that doesn’t really help the patient have a functional life.
F: You and I have had many conversations that led to you explaining some miserable Lupron side effects and though they're common, can you explain which ones you've had and how you manage them?
K: I had them all! Hot flashes, migraines, body aches, nausea, acne, hair loss… Many of the side effects only happen at the beginning of the treatment when your body is shutting down the estrogen production. I had headaches, acne, hot flashes and hair loss during the entire treatment period. For the migraines and headaches I had to wait them out. OTC migraine medicine worked some of the time. The other times I was just laying in a pitch black apartment hoping my head wouldn’t explode. The acne really pissed me off. I felt like the weird pre-teen in cartoons. I had awful acne and it would grow on my neck and the sides of my face. Nothing I could do really stopped it. I did start cleaning my face with rose water and that helped quite a bit. For the hot flashes I took the add-back pill which is usually prescribed so you don’t feel like you are the 7th circle of hell. You still feel like you’re the 1st circle but it’s not nearly as bad. The hair loss was a heavy hitter. I would sit in the shower and cry as more and more strands of hair broke off. It was growing weaker due to the lack or hormones and there wasn’t much I could do but take biotin and hope for the best.
F: What advice would you give a woman who is getting her first Lupron shot?
K: RESEARCH! READ READ READ. Knowledge is your best friend not just for Lupron but for all aspects of women’s health and your body in general. Usually we as patients know more about our condition than the doctors we see. If you chose Lupron as your treatment know it is not easy. It is not a walk in the park and that is because it is taking away something your body has always lived with. Once you know the weight of the treatment decide if you think it’s right for you. If it is, it’s not an easy ride but it could pay off in the end. I sought out the treatment as a last resort before surgery and it ended up helping more than I thought it would.
F: Through all your ups and downs with Lupron, if you had to do it all over again, would this still be a course of treatment you would use to help your Endometriosis?
K: I think I would still make the same decision. It wasn’t an easy choice and it definitely tried my spirit much like this condition does for us on a regular basis but it helped enough to outweigh most of the side effects.
F: How long do you think you'll continue Lupron for?
K: I finished my first 6 month series this summer. Since then my pain has been more manageable. I would like to have another surgery before I am willing to try it again.
F: As we wrap up, I want to thank you for sharing your experience! I also wanted to know what your plans are for life without Lupron? What do you think life with endo will look like without the help of Lupron?
K: I’m currently looking at switching to an IUD and seeing if that helps with my current pain, then maybe surgery. Because the Lupron did alleviate some of my pain life without it has been better than life before it. During my Lupron treatment I found the energy to start doing yoga again and have started to strengthen and tone my body more which helps me manage my pain level. Lupron has a lot of bad things that come along with it but it did help me and my body get back on track and I have 25% more energy than before my treatment. I’m not really sure where I would be had I not chosen to try the treatment. However, if you had ask me during my Lupron series if it was worth it I would have said HELL NO! Now that I’m out of the storm I have a better perspective on how much good it actually did for me. I still miss having a decent amount of hair but it is growing back so I’ll live!
Thank you so much Endotwins for allowing me to share and for providing an awesome resource for women!