In the summer of 2019 after a little bit of a battle with severe pelvic pain, multiple ER visits, hospitalizations, surgery and enough morphine to kill a herd of horses, I was finally diagnosed with endometriosis & adenomyosis. I had an atypical presentation which made it harder to detect but overall, I got lucky with how relatively fast I was able to get diagnosed. Regardless, after I was finally told what was wrong with me, I wasn’t sure what was next and even though I had studied endometriosis & adenomyosis in class, the moment I was told I had it I was no longer a student, the little information I knew flew out the window. I was scared but hopeful that I could just “ take it out” even though I knew that although surgery could take care of the endo for a while, adenomyosis was impossible to “just take out” without having to remove my entire uterus!
So, my doctor was very clear with the options I had, he said “we treat this medically, we can treat this with Lupron. Is either that or we take out your uterus and I’m not taking out the uterus of a 27-year-old woman” It became clear at that moment that my “options” were either, Lupron or deal with the crippling pain, because I was certainly not ready to decide having a hysterectomy at 27. At that point I had tried everything that was possible to try and nothing had work, so naturally, I was leaning towards Lupron. Of course, I did what any curious human would do in that situation, I went online! W R O N G! I mean, it’s ok to want to look for information, but I made a rookie mistake; I started reading forums & oh lord did that freak me out beyond believe! If there’s something I have learned is NEVER GO TO FORUMS! Don’t get me wrong, they can be helpful, but if you are going to go down that rabbit hole there’s a few things you should keep in mind;
#1. we are all different!!!
#2. Our genetic make-up is different, our predispositions are different, our overall health is different. Therefore, do not, ever, take anyone’s experience at face value. Especially when it has to do with health, medical conditions or experiences with medications because we will ALL have a different reaction to the same treatment … again, WE ARE ALL DIFFERENT THEREFOR WE WILL REACT DIFFERENTLY!!!!!!! ( CANT STRESS THIS ENOUGH)
#3. what works for me, might not work for you but the opposite is also true.
All this being said, let’s talk about Lupron! What the heck is it?
Lupron is a gonadotropin releasing hormone (GnRH) agonist. GnRH is a hormone in your body that triggers the production of two other very important hormones, LH & FSH, together these two travel to your ovaries and set off estrogen production, along with other hormones. You see, estrogen, is the hormone that feeds the rogue endometrial cells that cause endo & adenomyosis. (A quick side note; there is a previous post explaining all about both conditions if you want to read more, there’s also a post with a link to a YouTube video that explains everything as well!) With every cycle, there’s a peak in estrogen, it’s usually at this point where symptoms of these conditions, more specifically endometriosis, tend to be the most severe. Lupron is meant to halt the production of GnRH and therefor the subsequent hormones thereby improving symptoms.
But there’s a catch! No estrogen = pseudomenopause!
Yep! Friends I was in fact a menopausal 27-year-old for six months & I kinda hated every second of it, but you know what I hated more than back stiffness & hot flashes? The crippling pain I was in before I started the therapy.
Lupron is not a perfect drug, in fact many would argue that it’s the opposite, there’s a lot of anecdotal information online about how the drug causes horrible side effects and although that was very scary to read & I knew that I had to give it a chance and if you decide you want to give it a chance too here’s a few things I want you to keep in mind & consult with your physician!
#1. Lupron SHOULD NOT be taken for more than six months at a time!
- I noticed in a lot of the posts I read that people mentioned how they had been on the drug for YEARS!!!! Remember, Lupron halts estrogen production. Estrogen is a key hormone for maintenance of overall bone health therefor by decreasing estrogen’s level in your body it could essentially accelerate the process of bone loss, leading to symptoms of osteoporosis ( which was a common complaint amongst women taking Lupron for too long) For this and many other reasons the standard therapy is meant to be no more than six months at a time.
#2. You’re going to need to supplement!
- Technically, you will experience the effects of being estrogen deprived, these are not exactly “side effects” as much as they are menopause symptoms.
- Bone pain, stiffness, muscle aches are all common symptoms of menopause and chances are you might experience these while you’re on Lupron so you’re going to need to give your body some essential vitamins and minerals daily to combat these symptoms.
- Remember while on Lupron your estrogen levels decline, estrogen is a hormone that helps prevent bone loss by stopping the action of cells that break down bone. Not having this essential hormone will essentially leave these “bone breaking cells” running a bit wild therefor supplementing with Calcium & Magnesium will help preserve bone as well as relieve bone & muscle related symptoms such as aches, stiffness etc. REMEMEBER consult the intake of any supplement including appropriate dosing, even if it’s over the counter, with your physician! Some conditions and medications might interact with these supplements, so please, always consult anything you take with your doctor prior.
#3. Move your body!!!
- I used to wake up super stiff in the morning, it could be pretty painful at times and it might be painful for you too but you’re going to need to keep moving. Moving will help you lubricate your joints and warm up your muscles, this will make you feel 10x better.
- Keep a steady routine of exercise even if it’s for 20 or 30 minutes a day or at least 3 times a week. Make sure you focus on weight bearing exercises as these have been shown to increase bone density.
#4. Dietary changes
- Lupron is known to cause weight gain. This is something that varies from person to person and it will ultimately depend on your overall health, diet and predispositions. I gained an approximate of 10 pounds in the six months I was on Lupron with no noticeable change in eating habits, however, I must admit that I was a bit more sedentary than usual so that could have played a role in the weight gain, since, I have lost 7 out of the 10 pounds.
- Try to follow an anti-inflammatory diet, this is essential even if you’re not planning on taking Lupron. Endometriosis is an inflammatory disease & foods that cause inflammation in the body can exacerbate symptoms.
- Limit your meat intake/ protein in general. Protein has hydrogen ions which make our bodies a tad more acidic, an acidic environment is one where cells that break down bone can thrive in and since while on Lupron you won’t have much estrogen around to keep these ” bone breaking cells” in check the acidic environment can end up promoting bone loss. Studies have shown that a high protein diet can accelerate osteoporosis by depleting bone from their calcium.
#5. ADD back therapy
- “add back therapy” is the addition of a very small dose of estrogen + progesterone or progesterone alone. This is given alongside Lupron or drugs like it to reduce side effects as well as protect the bone.
- add back therapy might not be appropriate for everyone and it is prescribed on a patient to patient basis. Consult with your doctor if add back therapy is right for you.
#6. Keep track of your mental health
- hormonal alterations can affect neurotransmitters. Anxiety & depression are often seen among menopausal women therefor it would not be a surprise to experience some alterations in mood while on Lupron therapy. Keep track of your mood and immediately consult your doctor if you’re experiencing symptoms of depression such as;
- low mood or sadness that last for more than two weeks.
- hopelessness, low self-esteem, feelings of guilt, irritability, lack of motivation and / or interest in your hobbies, work or things that used to make you feel joy.
- feeling constant worry, suicidal thoughts or thoughts about self-harm.
- lack of energy.
- low sex drive
- changes in appetite (Lupron can also cause changes In appetite)
- disturbed sleep (Lupron can also cause disturbed sleep)
Ok, so these are some of the Lupron basics & the information that helped me manage this adventure. I do want to add that although it might help, Lupron is not a cure for endometriosis/ adenomyosis and recurrence often occurs. If anything, Lupron acts as a temporary band aid to a problem that as of right now has no definitive cure other than …. well, a hysterectomy.
When I compare where my physical and emotional health was a year ago to where it is now it makes this rollercoaster of a treatment worth it enough however I can only speak from my own experience, there are many women who have had negative experiences & in no way am I subtracting value to those experiences but I do encourage everyone to take anecdotes whether good or bad, with a grain of salt, consider all the possibilities, ask all the right questions & come up with a safe and educated decision that will ultimately benefit you the most.
xx
Make sure to check out other the other posts about endometriosis & adenomyosis!
stephlinnmartinez 
These are all great points. I definitely understand where you are coming from. As a “healthy” 22 year old a hysterectomy isn’t even talked about even though it’s my body. They always tell me to try a different form of this and that. I’m kind of at a standstill. But this info on Lupron is so important for others to have, and I know it’ll be appreciate. We are all different, even if we have similar experiences, and it’s worth it to try new things. What is your current treatment plan? Are you still on Lupron?
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thank you so much! Thank you for taking time to read this! This is a tough journey to go through isn’t it? For me, even the word “hysterectomy” forced me to think about so many things I hadn’t otherwise thought of, do I want children? am I ready to make a decision to go through that? if I do feel thats my only option, would it even be possible at this point, considering how many doctors resist doing that surgery at such a young age? so many questions and so much frustration.
I finished my 6 months of Lupron treatment in February. I was supposed to start taking OCPs after I was done with Lupron, but I felt my body needed a bit of a break from drugs & hormones. But I do want to remain consistent with treatments so I have an appointment at the end of the month to go through what the next steps are.
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