My pelvic pain first started at age 13 with menses, but I was blacking out at 28-day intervals from the age of nine. I was told it was normal by both my grandmother and mother because they experienced the same thing. The abdominopelvic symptoms got severe after the birth of my daughter when I was 33 years old. I didn’t get a diagnosis for another 14 years at the age of 47 years. It has been nothing but a steady stream of dismissive and abusive doctors with absolutely nobody offering an explanation. The only solutions that I was offered were a hysterectomy and Lupron. Neither helped and in fact, made everything worse.
When I was 44, I had a hysterectomy, and adenomyosis was found but I was told everything was removed. Four months after my subtotal hysterectomy in December 2014, I was still having the same pelvic pain symptoms. My gynecologist didn’t know what else to do other than to use Lupron for 3-6 months to see if it would diminish my pelvic pain. If the pain persisted, she said the ovaries would have to come out. She told me she was using it as a diagnostic tool and if I didn’t try it she “would drop me as a patient.” More accurately, she screamed at me, started frantically waving her hands above her head and hit me with her pen. There were times I wish I had a witness to some of the behavior I was subjected to over the years; this was definitely one of them. I took the prescription home but didn’t fill it. I was not only shocked by her behavior but also, a little leery about being souped-up on yet another medication with horrible side effects.
Worsening Symptoms While on Lupron
I held off until Sept 2015 when I decided I couldn’t stand the pain anymore. My first injection was in October and I seemed to handle it quite well. I had relief from my pelvic pain within two days and a bit of mild dizziness that went away after about a week. The reduction in pain allowed me to go out for walks 2-3 times per day, which is something I hadn’t experienced for quite a long time—it was great to be walking again. Then I started noticing some strange symptoms every two weeks after the injection.
The first time it happened the symptoms were so mild I brushed them off as a minor cold bug: body aches and pains, sniffles, lungs slightly congested, watery eyes, my hearing was off and my eardrums felt plugged up. I thought maybe my daughter brought a cold bug home from school but these same symptoms happened exactly two weeks after the Lupron injection and every time the symptoms kept getting stronger. When I was due for my 4th injection I knew something wasn’t right. My regular gynecologist wasn’t in and I’m glad she wasn’t. The one I did speak to about my symptoms told me to not take it anymore. He looked up my symptoms in a large pharmaceutical reference book; Lupron was listed as having “flu-like symptoms” in its trial phase but had no further information. I was told to go home and just let the effects “wear off.”
From December 2015 to February 2016, I had 11 visits to the ER for worsening flu-like symptoms that included: strong body aches and pains that felt like I had been hit by a train, congested lungs, and coughing up greenish-yellow fluid. The same gross mucous was coming out of my eyes and ears. My lungs were so congested I was gasping for air and I was terrified! They tested for bacteria, throat and nasal swabs, and full blood work—everything came back negative and it wasn’t pneumonia. I didn’t even have a fever. The last ER doctor I saw actually called the drugmaker to see what to do. He told me they have something similar to a WHMIS or Workplace Hazardous Materials Information System on all their products in case of adverse events. Well, guess what? They didn’t! The representative told him they knew about the severe flu-like symptoms in their trials with Lupron but they did not follow those patients to record their outcomes. In other words, there was no due diligence before releasing their product to the public. They don’t even know if those patients are still alive.
I was given an IV to prevent dehydration and placed on oxygen until my vitals improved; even then I was sent home without any concrete advice on how to deal with the side effects other than “it should wear off” and “if it gets worse don’t hesitate to come back”—like now isn’t worse. I asked the ER doctor if he is filing an adverse event report to Health Canada or the FDA and he said “that is for the patients to do but in your case, I wouldn’t worry about it. We don’t know if that is what is causing your symptoms. It could just be a viral thing.” I was about ready to flip my lid! He told me earlier if it was viral I would have a fever because that is what your body does to fight off infection and viral infection symptoms build up, peak and then you start feeling better. These symptoms occurred two weeks after each and every injection. I felt like I was talking to a brick wall. Do you know it took another four months for that damn Lupron to wear off? The entire time I was terrified. I was gasping for air while this green mucus is pouring out of my ears, eyes, and lungs. I would panic, cry, and then have to calm myself down because crying would congest my lungs making it harder to breathe. I have never been so scared in all my life.
Lupron Side Effects and Gynecological Ignorance
I did go back to the gynecologist that prescribed the Lupron and she had the nerve to tell me it was not her problem and to go see my GP. My GP told me since she didn’t prescribe it that it was the gyn’s problem. I went back to the gynecologist to tell her what my GP said and she threw another hissy fit because, apparently, I wasn’t on Lupron long enough to satisfy her 6-month requirement. My husband didn’t believe what I was telling him so I had him call the office to rebook an appointment so that we both could talk to her. At this next appointment, she placated my husband and refused to look me in the eye while she was speaking. I reminded her of everything she said previously; that it is her problem because she is the prescribing doctor; that my pelvic pain symptoms did improve while on the Lupron; that my adverse effects were directly related to the drug as my worsening symptoms occurred exactly two weeks after each and every injection; that I was tested at the ER and it was not viral or bacterial; that the ER doctor called the drugmaker and they had severe flu-like symptoms listed during their drug trials but never not followed up. I informed her I filed complaints with both Health Canada and the FDA.
She got up to check on my ER visit reports. While she was gone even my husband noticed she wasn’t talking directly to me, only to him and that I did meet her requirements—Lupron for at least 3 months, if the pain is relieved then it means the ovaries need to come out. My husband was ready to have it out with her when she came back. She kept trying to placate us, saying things like “I don’t know what to do”. I kept pushing for an answer—what was causing my pelvic pain if Lupron was the diagnostic tool—what was she using it to diagnose? She never mentioned “endometriosis”. I asked her if it could be cancer–no answer. I finally said, “If you don’t know what to do then send me to someone who has more experience dealing with complex gynecological issues. I want a referral to the Women’s Health Sciences Centre in Halifax.”
I hate to think of what would have happened if my husband wasn’t there to keep me centered; even he was getting frustrated by this gynecologist. She finally agreed to send a referral to Halifax. As we were leaving, she told my husband she was retiring in a couple of months so do not bother contacting her for any further concerns. I found out just a few days ago she is still working as a gyn—so she basically lied to my husband. What a piece of work!
I don’t understand how doctors can behave like this. There has to be some kind of benefit, either monetary kickbacks or endorsements, to blindly stand behind a drug like this and totally ignore what the patient is telling you to your face.
Recovering From Lupron
It took four months for the Lupron effects to “wear off” and for my lungs, ears, and eyes to return to normal. It was a terrifying experience that I don’t wish on anyone. I realize I was one of the lucky ones to walk away from this experience whereas others haven’t. To this day, I keep asking myself why I was put through this Hell in the first place. Why are doctors so ignorant in prescribing this drug as a diagnostic tool if they know about the adverse effects? We trust that drug companies are performing due diligence with regards to adverse reactions in trials and long-term follow up and they are NOT! How is it that the drug maker can get away with this? Why are there not more strict checks and balances before releasing a drug and when problems are being reported afterward? It is absolutely insane that this drug, with all its reported adverse effects and deaths, is still on the market. Why are the FDA and Canada Health dragging their heels and not banning this drug?
Two years after the hysterectomy and Lupron, I was still in excruciating pain. I had a cervical cyst removed and pathology indicated that I had endometriosis. My ovaries were removed in 2017 and both were completely “disintegrated”. Once again I had to fight to get my diagnosis. The surgeon had the nerve to try to hide the biopsy report so I wouldn’t have proof. Luckily, the medical records clerk did some searching and found it, but she also told me she could have lost her job because of what this doctor did.
My NP, although supportive in the beginning, has now resorted to telling me “this is your new normal, you’re just going to have to get used to it.” I am at my wit’s end trying to get help dealing with what is left of my health. I am not able to work or enjoy any quality of life anymore. I’ve been given the run-a-round by 5 GPs, 1 NP, 11 OBGYNs, and 35+ ER doctors. I don’t have any faith left in our health care system. My only alternative is to seek legal advice, but I really don’t know how to move forward in a system that is so dismissive and corrupt in how it treats women’s health issues. I’m beyond whatever “disgusted” is.
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This story was published originally on June 8, 2020.