In June 2006 a 10cm endometrioma was found on my ultrasound. I researched as much as I could about endometriosis as I was told it was a possibility that I had it. I was sent to my local Gyno and she told me she wanted to put me on Lupron and that nothing could be done even if I had Endo. I refused. I didn’t want to be put on a medication if it wasn’t proven that I had endometriosis. To me, that was really stupid on the doctor’s part. I did my research. I knew it was used for endometriosis, but unless I was diagnosed, I was NOT going on Lupron.
I searched high and low and thanks to the worldwide web I found two specialists in Toronto for endometriosis, so I had my doctor send the referral over. He found the recto-vaginal cyst by rectal and vaginal exam that had been missed for 14 years. I was happy that finally they had found something. I knew it wasn’t all in my head for these many years. He sent me to his protégé.
Post Surgery Lupron
I was on the operating table three months later in June 2007. After my surgery I was out of it. The surgeon supposedly talked to me but I was not coherent at the time so his intern was told to come in. I was told that Lupron was the best medication for the severity of the disease I had and she gave me a prescription. I felt like I had to take it. I just had surgery and she was telling me it was the best option and at the time. The specialist, the Gyno and the GP all told me that “Lupron suppresses endometriosis.”
From June to September 2007, I took the monthly injections and I remember the first month feeling somewhat okay. I guess I put most of the blame for the side effects on my recent surgery. After two months, depression started to kick in and a major fibromyalgia flare as well. My bones and joints were so sore. My muscles ached like crazy and that was with the Add-back therapy. I would get sharp pains to the pelvis that would leave me breathless. On the plus side, no period. After three months I went back on my regular birth control pill, Marvelon. The transition went well.
Lupron Again and Again
In June 2008 I was told to go on Lupron again. I must have been a glutton for punishment because I did, for another three months of monthly injections without the Add-back therapy. My mood was extremely out of control. I was angry and agitated. The Lupron injection was causing insomnia. My moods were all over the place and the pain intense, however, there was no bleeding or Endo pain. After this, I went right back on Marvelon.
In 2011 I went back and forth from the Endo specialist who did my surgery and pain management clinic. I contracted PID. I felt that there was major damage from the PID plus Endo. The original surgeon said there was fluid in the cul-de-sac and told me I had to go on Lupron again. He said if the pain and fluid went away it was Endo and he would operate and if it didn’t, it wasn’t Endo.
So in October 2011, I had one injection that lasted for three months without the Add-back therapy, per his request. I didn’t want to, but the pain was too much to take, so I did it anyways. Well, this was the worst experience yet because even if I wanted off of Lupron after a month, I couldn’t because it was a 3 month injection. I was screwed. The first month was okay, but then I became extremely depressed, no sex drive, chronic headaches, nausea, no ambition, and insomnia.
I went back after three months. He didn’t do an ultrasound and because my pain wasn’t gone he said it wasn’t Endo; it was neuropathic pain syndrome. Oh Lord. He really pissed me off. So back to the pain management clinic to be a guinea pig for another year before she would agree to operate.
In February of 2013 I had surgery again and Endo WAS found.
What I Learned
Lupron did not suppress my endometriosis. The doctors either did not know this or prescribed it anyway. I realized after my first injection, that the medical staff at the clinics also did not know how to use Lupron. They had to read the instructions on the box, and even then, would prepare the injection wrong. The instructions clearly say “DON’T SHAKE.” It is supposed to be mixed by rocking it back and forth slowly and gently. I noticed that when they mixed it improperly, the Lupron side-effects came on much more quickly and much stronger than when they mixed it properly. I don’t know if this is coincidence or not.
If I had known what I know now about Endo and Lupron after speaking to Dr. Redwine, I would never have taken this medication to begin with. Nothing suppresses Endo, no medication, no diets etc. If it is not all excised, it will continue to grow, period. I went through years of hell because the doctors did not know what they were doing. Please don’t make the same mistake I did.
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I typed in “Lupron Stories” on Google. I am a man who has only taken his first 3-month injection. For your information I am 60 I sleep all day and up all night, my testicles and penis have shriveled to half their previous size, and I have homosexual thoughts that I never had before. I am doing lots of walking and weight lifting to try to reduce the dreaded effects. 2 things: “there is no money in curing cancer, the money is in treating cancer” “sometimes cancer dont kill you, the cancer treatment does.”
Thank you Ladies for all your posts. It is so important we share our stories. I am convinced that the doctors don’t know very much about this drug and the long term effects ( never mind the short term effect.) We all respond differently to a hormone induced drug. My story is a little different from all of yours. I am 55 and coincidentially my surgeon ( after doing a ‘bladder lift” surgery) found this very rare non cancerous tumour called IVP. It is basically a ‘fibroid’ that spreads quickly and could be dangerous if it spreads into the artery and eventually the heart. My surgeon STRONGLY suggested lupron to shrink the fibroid and hopefully stop it from spreading. I was injected with a 3 month dose of lupron 5 days ago. I am not feeling anything but slight dizziness. I am really concerned when this drugs does “hit ” me, it will be very powerful. Has anyone taken this drug and only felt the effects weeks later? Should I be concerned the hot flashes, depression , bone loss will be more intense since I am not feeling any effects right now? Thank you!
It took about 3 weeks for me to start feeling something.
Thanks my friend. I really felt pushed all three times and the last one just to get him to do a surgery to confirm that the Endo had come back along with adhesion’s I did it, and he then refused to operate saying it was too risky due to the severity of the disease I had. So he made me put a chemical into my body to shut me up then tells me sorry I can’t do your surgery.
I ended up with unneeded medication and got butchered by another surgeon when in fact I had Endo and Adhesions.
We do know more not because we think we are smarter but we know our bodies and when something is wrong. Shame on them for pushing this so they can get a kick back or to shut patients up.
Wow your story sounds very similar to mine. I have suffered from endo for 20 years and at 40 was Finally diagnosed with stage 4, a 9 cm endometrial fibroid in my uterus, a 4 cm endometrium on my ovary and was put on Lupron. My Dr told me that I was too young for any surgery so I would need to be on lupron for 10 YEARS! While it did seem to help with the pain, it made me a basket case and took my life away in many others ways. I only took it for 4 months and finally went to the Mayo Clinic in Rochester USA. They whole me that if I had stayed on lupron for the time my Dr suggested, I would have lost more than 50% of my bone mass. In the USA a it is illegal to be on lupron for longer than 3 months at a time and absolutely no longer than 2 years of 3 month intervals. I had surgery there and got my life back and more!! Now 3 years later I am experiencing some familiar symptoms. We really need better resources and help for endometriosis in Canada!!!
I am not sure if you know this or not but we have resources for Endometriosis. It is called the TENC (The Endometriosis Network of Canada) it is out of Toronto but is still waiting on charity status. They are doing the best they can and have come along way and we are that much closer..
I can tell that you have not been to the right doctors. Right now there is a legal battle going on against Lupron but it is not illegal to be on it for more than 3 months it is not recommended to be on it for more than 3 months. The doctor that told you 10 yrs sounds off to me. I have never heard of a doctor saying that but I have heard many strange things so I wouldn’t be surprised.
If you are looking for an Endo specialist please visit the TENC network here for the list. http://endometriosisnetwork.com/information/finding-a-specialist-3/
Thank you Angela
On behalf of all endo sisters for sharing with us.
How come we all know more than doctors?
Lupron & Zoladex must bring a big pay cheque with it as it brings not much else. I too was fobbed off with this horrid testicular cancer drug. Fight the good fight for us all!
Di I never even saw this post until now.
Love you!
Hi Angela I am currently experiencing the IBS, migraine, period dilemma. Since I started my period at the age of 12 I had issues with my periods. I didnt start getting the migraines up until the past 10 yrs (Im 39). Now my periods used to last up to 2 months at a time, unfortunately I suffered from a pulmonary embolism back in ’06 so I cannot take any form of birth control for fear it will cause another blood clot. My husband doesn’t understand the pain and my drs dont know what the hell is wrong with me. I bounce back and forth between oncology, neurology, gastroenterology, and gynecology as well as my regular dr. A few years back I was told I had endo and needed a d&c a week before my procedure I had some blood work done and found out I was pregnant! Throughout my pregnancy I had to have heparin shots which caused me to spot throughout my pregnancy and i had nothing but aura migraines throughout the entire pregnancy, sometimes even losing my eyesight during the day. So then I started going to ophthalmology…ugh the never ending cycle of misdiagnoses!! I’m so tired of being tired, depressed, anxious, angry, and in pain. Im so glad I found your post because now I dont feel so crazy anymore. Im going to have them run some more testing on me. I want them to find whats wrong and fix it before I cant move or take care of my now 3 yr old