In my work with The Endometriosis Network Canada, I have heard many women say that their doctors told them that if their pain does not go away on Lupron, then the pain must not be from endometriosis. Lupron never has and never will be an effective tool for diagnosing whether pain is due to endometriosis. Not only does Lupron have the potential for significant side effects, which alone should abrogate its use as a diagnostic tool, but it also is not at all effective at diagnosing endometriosis and distinguishing it from other conditions.
Lupron is a synthetic version of a naturally occurring hormone called gonadotropin-releasing hormone, and its action is actually stronger than the naturally occurring GnRH. It is a long-acting medication that initially stimulates hormones in the pituitary gland that control the menstrual cycle, and then suppresses these functions. It is typically given as a 1 month or 3 month injection.
Lupron Side Effects
Lupron therapy is associated with a significant potential for side effects. One of the biggest problems with Lupron is its effect on bone density (it can decrease bone density), and this effect is not always completely reversible after Lupron is discontinued. Lupron can also cause joint pain, which in some cases is permanent. Other potential side effects include hot flashes, vaginal dryness, headaches, mood swings, decreased interest in sex, depression (in some cases severe), cognitive problems, fatigue, acne, headaches, and upset stomach. Personal stories of women’s experiences of the downside of Lupron can be found here, here, here, here, and here.
Given all of these side effects, you might be wondering: why would anyone subject themselves to the potential for at best, a month of these side effects, and at worst, a lifetime of some of them, for the purpose of diagnosis? Even from the side effect perspective, using Lupron to try to diagnose endometriosis seems like a bad idea. But now we come to the more technical part of the discussion, which will address whether Lupron could even work as a diagnostic tool for endometriosis.
How to Evaluate a Diagnostic Tool
To evaluate the effectiveness of a diagnostic tool, the two measures that are used are called sensitivity and specificity. Sensitivity addresses the question of how often the diagnostic tool will pick up the disease, in people who have that disease. Specificity addresses the question of how often the test will be positive in people who actually do not have the disease (but may have conditions other than the one you are testing for). A good diagnostic test will pick up the presence of the condition in most people who have it, while not testing positive in people who may have similar symptoms but have a different disease. In other words, a good diagnostic test will have fairly high sensitivity and specificity.
All devices or tests that are approved by regulatory agencies as diagnostics have to undergo testing to demonstrate sufficient sensitivity and specificity. Lupron has not undergone such testing, because it was not developed as a diagnostic, and is not meant to be used as one. However, given the clinical trials that were done looking at the effectiveness of Lupron as a drug therapy, it is clear that the sensitivity and specificity of it as a diagnostic would not support its use in that way.
Lupron as a Diagnostic?
The clinical trial data published by the manufacturer in its prescribing information can be illuminating when considering its sensitivity and specificity for diagnosing endometriosis. The clinical trials used several measures to assess response to the drug, such as pelvic pain, dyspareunia (pain with intercourse), dysmenorrhea (pain with periods), and pelvic tenderness. The results showed that Lupron was by far the most effective at treating dysmenorrhea, compared to the other symptoms. Almost 90 percent of study participants had dysmenorrhea before taking Lupron, and after 6 months of treatment, fewer than 10 percent still had dysmenorrhea. (Not surprisingly, within 6 months after completing treatment, about 80 percent had dysmenorrhea again.) Looking at endometriosis symptoms other than pelvic pain, about 75 percent of study participants had pelvic pain at the start of the study, and 45 percent still had pelvic pain at the end. Lupron was similarly less effective at treating other symptoms of endometriosis.
From these results, we can get an idea of what the sensitivity of Lupron as a diagnostic would be. Imagine giving Lupron to a group of women with endometriosis, whose symptoms will vary from primarily dysmenorrhea, to all different types of pelvic pain at different times (or in some cases, all times) of the menstrual cycle. Those who have primarily dysmenorrhea will feel that their pain has been treated, whereas, because it is less effective on all other types of pain and symptoms, some women may feel that their pain did not decrease at all (remember, 45 percent of women still had pelvic pain after 6 months of Lupron). This is why it is completely incorrect for any doctor to say that if a woman’s pain did not decrease on Lupron, the pain cannot be from endometriosis. Therefore, the sensitivity of Lupron as a diagnostic for endometriosis is predicted to be poor, because in a significant number of women who actually do have endometriosis, it will not treat their pain substantially.
The specificity of Lupron as a diagnostic would be even worse. Clearly Lupron is effective at treating dysmenorrhea, because by its very mechanism of action it puts a woman into chemically-induced menopause, and you cannot have dysmenorrhea when you are not having periods. However, there are many causes of dysmenorrhea other than endometriosis. So even if Lupron does work to treat a woman’s pain (by preventing periods), this does not ensure that the cause of the pain was endometriosis.
A Call for More Research
There is no doubt that women would benefit greatly from a non-invasive diagnostic test for endometriosis, given that surgery is currently the only way to definitively diagnose it. However, Lupron is not sensitive or specific enough to be useful diagnostically. New diagnostic tests have been developed for many other diseases using recent advances in technology such as imaging methods, blood biomarkers, next generation sequencing, and others. A sensitive and specific diagnostic test for endometriosis is desperately needed. However, with so little funding going to basic and applied research into endometriosis, it is unlikely that this need will be met until this funding situation improves. As Siddhartha Mukherjee said about cancer in his book The Emperor of All Maladies:
“A disease needed to be transformed politically before it could be transformed scientifically.”
This is the situation that cancer research was in, during the 1940s, and sadly this is where we are at now, with endometriosis, a disease that affects one in ten women and has for centuries, in 2016.
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This article was published originally on March 14, 2016.
I just want to say I found your article very informative and well written and my heart goes out to all the women that suffer with endometriosis.
In my 20’s I had been suffering with severe abdominal pain and crippling periods. I had almost lost my job for to being able to go to work due to the pain. At that point I insisted that I needed medical help and saw a Gyno specialist. I was finally diagnosed with endometriosis and was rushed to surgery to have the built up clots removed.
I was given Lupron as a monthly injection along with a birth control to stop my periods. At first it was a relief from the mental and emotional stress of counting down the days till my next period but that didn’t last long.
Throughout taking Lupron I was noticing that I was having issues standing up, and or holding things. Fast forward 6 months later I could barely walk because of my horrible joint pain. I had no Idea why I was experiencing such weakness in my knees and when speaking to my Doctor he said that it wasn’t because of the Lupon but the birth control I was taking. So I switch birth control and slowly,,,, I really mean slowly started getting better.
I’m 34 and I have gone through 3 cycles of Lupron, the last cycle which I took for 8 months went really good because I experienced no side effects. ( Sorry I can’t no side effects, because the first week after the injection “I just feel off” not sure what to make of that.
I’m no Doctor to say that Lupron is good or healthy in any way because I’m sure it’s not, but it did help me. My panic attacks have subsided most likely because I know that there is a treatment I can take and I don’t have to suffer dreading another period.
So in short it wasn’t the Lupron that was the problem but the combination of birth control taken together created my sever joint pain for me. Thank you for taking the time to read my experience, I wish you all the best!
Thanks for the article. Sharing!!
I took Lupron last year 2015. It was the most horrible drug I have ever been made to take. Yes my drs made me take it after months of teling them no over and over again because of the side effects. I am one of those people that gets every single bad and most of the time rare side effects. No matter what I said they would continue to say that the only treatment I would take is pain medication. They said in order for me to keep getting care, my surgery was a few months away, I had to take it. I was in the ER for the millionth day in a row weighing under 100 pounds with my boyfriend begging them to help me. They said if I want any help I have to take Lupron. I was at my wits end and my boyfriend was begging me to do it, though he wasn’t the one that had to go through the side effects and he sent me off somewhere for them to deal with me. I was soooo suicidal on that medication. I ended up with my first ever 5150 and its still on my records. It doesn’t say its because of medication side effects either. Its been a horrible fight since then. Sex drive..gone, more pain…still here. I started having body pain like you wouldn’t believe..still here. Unbearable night sweats, anxiety 24 hours a day, I could not sleep no matter how tired I was…ever for over 3 months.I had no support system. I felt completely alone and it took all of my might not to kill myself while on this medication.They don’t belive that Lupron did all of those horrible things to me. The first week it was almost like I was having a manic everything great and I can do anything attitude. after that..horrible horrible horrible. I didn’t know who I was. no one did. If anyone is thinking of taking it, to me, it is not worth it at all. Nothing like adding more problems to the truckload I had already had before!
I am sorry you suffered such terrible side effects, and sadly that is not uncommon with Lupron. I really think it is wrong for any doctor to force this medication on women.
I didn’t realize that Lupron was also used as a diagnostic; I thought it was just a treatment option. Interestingly, the side effects sound very similar to those experienced by women using Depo-Provera. It sounds like a horrid drug with few redeeming qualities.
It is a horrid drug w/ few redeeming qualities. If you read some of the research and/or patient stories, the side effects are often debilitating and often chronic.
Would you be interested in writing an article about the side effects of Depo? It is something we need to tackle.
It is not officially used as a diagnostic, but many doctors will tell women that they must do a trial of Lupron before surgery, and if the pain doesn’t decrease on Lupron, they do not have endo. As Chandler said, many women have had awful experiences with Lupron. Some are lucky enough to get temporary pain relief without any bad side effects, but since it is a short term treatment that doesn’t permanently relieve pain, its potential usefulness is quite limited.
I am on lupron I have endometriosis, my belly would not go down I honestly don’t know what else to do I’m soo depressed
I have never had a normal sex drive after taking Lupron and that was over 9 years go!!
Trish, that is really terrible. Lupron does have lasting effects for many women. In rare cases the ovarian function can be affected permanently–as if the ovaries don’t wake up completely after the suppression by Lupron. If you can see a good naturopath they may be able to recommend supplements or something to help. I am sorry that you were harmed by Lupron.
I took Lupron twice they said to shrink cyst prior to having surgery. I as well have had no sex drive since. My Doctors I have gone to currently and in past have always said this problem was solely in my head. I have given up on ever having a normal sex drive in my 30’s I am now in my 40’s. Thank God I have an understanding spouse.
I can’t tell you how many doctors recommended Lupron to me over the years. Luckily, I did research first before agreeing to take it –and it was harder to do research when they first started recommended Lupron to me over 30 years ago, since the internet was not accessible like it is now.
Now, just search for Lupron and side effects or complaints and you get hundreds of articles.
The scariest article I found talked about the thousands of women who had filed complaints about Lupron (and this was decades ago). Many were suffering from serious problems like bones and teeth breaking. Some women were permanently disabled after taking it. I would tell doctors this after they recommended Lupron, but it didn’t seem to faze them.
What was even more infuriating is when I told a doctor who had recommended Lupron, that I discovered that just getting off cow dairy GREATLY reduced my pain, he could not have been less interested.
If it isn’t a drug or surgery, many MD’s simply are not interested.
That is so true Bett. Unfortunately there is no money in natural methods like diet. Many women with endometriosis do get some symptom relief from diet and lifestyle changes. My old doctor was one of the few who would recommend diet and lifestyle changes first, before going to other approaches like surgery or medication. All doctors in every field of specialization should have better training and more investment in recommending a healthy diet and lifestyle. Cow dairy is terrible for my pain too.
My daughter was prescribed 6 shots but she only had five. She was only 21 and the side effects were so bad we would not let her take it. We went to a doctor to have her hormone were all out of range. She had muscle pains (now Fibromyalgia),night terrors, hypothyroid, depression, and anxiety. She has been sick since taking these shots. It took us forever to convince the doctor of the side effect. He acted as if we were crazy.
Teresa, I am sorry for what your daughter went through. It’s all too common and most physicians don’t have a clue about the side effects of this medication. We have many articles about the side effects of Lupron and personal stories from women who have taken this drug. Some of those might help you and your daughter to understand what is happening.
Thank you so much for writing this article!