Women who suffer with endometriosis do not have many options for treatment. As a result, many women try Lupron because they are desperate to be pain and symptom free. I was one of these women. In 2011 and 2013, I tried Lupron for a total of three doses and wish I knew then what I know now.
In 2010, I was diagnosed with endometriosis laparoscopically. After that, I tried everything from many different types of birth controls and pain medications to depression medications that can also be used to treat pain. Nothing worked. My doctor at the time suggested Lupron to me and I was desperate. I felt like I had already put my life on hold long enough because of this disease and just wanted to be out of pain. However, now I feel like I am suffering the consequences and it didn’t even get rid of my pain.
In 2015, I was diagnosed with osteoporosis. Prior to this, I had never had a bone scan done, not even before being administered Lupron. In 2009, I was diagnosed with Vitamin D deficiency and have been taking a supplement ever since. Three months before being diagnosed with osteoporosis, I stress fractured my knee and was told at my age, it should not have happened. In 2014, I had a hysterectomy because of endometriosis; I couldn’t take the pain anymore and had disease on both ovaries.
Before this, I had never had bone problems or been told that I could. I blame Lupron and strongly believe using it as a treatment for endometriosis led to me having osteoporosis. At 27 years old, I am still trying to work with doctors to determine if there are any treatments I can do because people my age having osteoporosis is rare. Many medications women use for osteoporosis could negatively impact my bones even more because of my age. If I don’t use any treatment, I could suffer from even more fractures or bone breaks the older I get. Right now, my average T-score for my left hip is -3.6 and was -3.3 when I was first diagnosed. I have no idea when my bones became so brittle. In my case, I wish I would have never tried Lupron as now I know this is one of the many side effects of this terrible treatment for endometriosis and something I will have to deal with for the rest of my life.
There are not studies done on medications for osteoporosis in my age group because there are not enough people with the disease to study. The medications my current doctor wants me to try would be a daily injection I would give myself in the abdomen for two years. They are known to possibly cause osteosarcoma, a bone cancer. Based on my history, I don’t like my odds. At this time, I don’t know how I will try to treat osteoporosis. I am planning on looking into natural ways of treating the disease and see how that goes.
As a result from my knee injury two years ago, I had to have an arthroscopic surgery. My doctor repaired my torn meniscus and removed scar tissue. It is taking me longer to heal than I anticipated and I wonder if it is because I have osteoporosis.
If doctors use Lupron for patients, they should be required to give these patients bone scans before their first dose and do follow ups yearly. It is a known fact that Lupron should not be administered in more than 12 doses over a patient’s LIFETIME. I wonder why this is?
I hope my story helps someone make a decision that is best for their body and raise awareness about Lupron. I am not a doctor, nor do I claim to be, but I am a patient that continues to live with the outcomes of having endometriosis.
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This article was published originally on December 13, 2017.
Samantha – I’m so sorry for all you’ve been through. It’s shameful that women are not told about the many risks of Lupron. Of course, the hysterectomy with ovary removal has likely contributed to your osteoporosis. It sounds like you do not take estrogen which of course can feed any remaining endo especially if taken without a progestogen. That puts you at further risk of osteoporosis as well as other health problems. Have you considered taking some form of testosterone? Women without ovaries have 50% less testosterone than intact women. Testosterone is good for the bones and has some other benefits too.
I was 65 with stage 4 protate cancer, a large tumor in my prostate. Stated Lupron shots every 3 months. Got hot flashes 10 times a day. Had a lost filling in my tooth that broke off. So i could never get the calcium shot or Fosamax. Had no dental insurance, no way to pay for dental treatments. I stopped Lupron 18 months later. No sign a cancer, but all my jaw bone molars have broken off. Only 6 front teeth left. I believe eating an avocado a day with tumeric, ginger, mustard seed, black pepper, Cayenne pepper and drinking V8 juice for 2 years removed my cancer. My prostate tumor is gone, normal size lymph nodes. MRI 3T found no cancer. But my jaw bone is a battle ground. I found colloidal silver stops the tooth decay infections and pain. I will need a full denture there now. But i still cannot use fosamax, or afford a dentist!!!
I’m 42 and I had my first Lupron injection at 24. I was diagnosed with stage 4 endometriosis and was told to have a child post surgery. It didn’t make sense since I was an unmarried college student so I tried Lupron. I did a 2nd round of Lupron at 38 and I went into menopause. I broke two of my ribs two months ago at 42 and they have not finished healing. My X-ray results show I have osteoporosis. Thanks Lupron.
Hi Jennifer, I’m so sorry to hear that. I completely understand ? sending you hugs.
My urologist, Dr. Jumper, gave me a 22.5 mg OVERDOSE of Lupron Depot,
for P.C.
It ‘came very, very, very close to killing me’!
The ‘continuing side effects of it are:
“WORSE than the cancer I have.
CHECK THE “LABEL”:
“Lupron Depot (leuprolite acetate) DOES “”NOT””” CURE CANCER !!!!!!!!!!!
Hi Keith, I’m so sorry to hear that. Sending you hugs ?
My both knees are killing me with pain It feels like it’s progressing each day I stopped taking Lupron last summer But I didn’t think the side effects would be so severe I went to an orthopedic doctor and he was no help I told him about my cancer issue and he brushed it off My advice to anyone thinking about taking Lupron Is to get a second opinion and even a third This so called cancer killer is not kind to s as anyone’s body at all
“READ THE LABEL” !
“LUPRON DEPOT DOES ””NOT CURE”’ CANCER.”
IT, ‘MAKES YOU ””FEEL BETTER’ (NOT!)
My left knee swelled up out of the blue 2 months ago. It felt tight and painful. I went to the doctors and was given the run around. I finally got a knee xray. They found I have Osteoporosis and Osteoarthritis in both knees. I asked for lab tests. They found I was severely low in Vitamin D. I’ve never broke a bone in my life. I’ve always had strong bones. Now, I feel like my bones, joints, hair and teeth are all brittle. I’m 45 and feel like I aged 40 years in a short time.
Very common post Lupron. Have you begun supplement with vitamins, D, A and K2 yet to replace what has been lost?
My Primary Care started me on Vitamin D2 50,000 units (Driscol) 1 capsule a wk. I have 4 more weeks left. On my own, I just started magnesium, calcium, zinc and multivitamins. I have a referral in for Physical Therapy, but they haven’t given me a treatment plan for my knees yet. I just started Physical Therapy for my left Shoulder(frozen). I have so many other post Lupron after effects, I don’t know where to begin. I have Memory recall problems, cognitive weakness, exhaustion, low concentration and weak focus. There is a whole list of symptoms. Should I ask for A & K2 labs? Or just add those vitamins daily? I’m trying to reverse the damage Lupron caused, everyday it seems I have a new ailment or side effect from this.
From what I understand, D3 is what you want. We have several articles on that by Susan Rex Ryan.
As far as A and K2, they won’t test but vitamin D should always be given with that. Here’s an article to get you started on why vitamin D, A, K2. There are many more, if you do a search. This will give you some of the basics.
https://www.westonaprice.org/health-topics/abcs-of-nutrition/vitamin-d-supplementation-panacea-potential-problem/
Regarding other nutrients, read about thiamine (B1) on our site, and elsewhere if you choose. Thiamine is key for repairing mitochondria, which is critical for healing post lupron.
I will research the information and the links that you have provided. There are so many health issues that I’m experiencing and I do not know where to begin at times. But, improving my vitamin deficiencies will be a start. I am very interested in researching and understanding how to repair mitochondria. Do you know if following a Keto Diet or a plant-based diet has helped people to restore and repair their health/cells? I have heard positives from both diets. One step at a time, one day at a time. I sincerely appreciate your help.
I would keep it simple. Rectify nutrient deficiencies. Clean up your diet, remove processed foods, eat more protein and fat and reduce carbs. Remember though, this will take time. It is not an overnight, quick fix. Be patient.
I feel like this is going to be a journey of rebuilding my whole self. (Inside and out) At times this is surreal that this happened and I can’t believe that regression continuously occurs. I need to write out a plan and work one step at a time, so that I won’t become overwhelmed. Thank you. I definitely will need patience. This site has so much important information, I’ve been reading off and on all day. Thank you again. I truly appreciate the information that you shared with me. All of us who are in the same boat have a long road to recovery. I’m determined to get my life back and help others along the way.
Hi Melissa, I’m so sorry to hear that. I hope your doctors have been able to give you some answers. ?
My OBGYN Doctor ordered that I have a HVP test along with my Mamogram in January of 2017.
I had no idea that this test had been ordered until I received a Bill for $110.00 saying Medicare did not cover this test as I am over 65 years of age. I had just turned 81 that previous October.
I was furious as I would have refused the need for the test even without knowing I was not covered by Medicare. I knew I did not have HVP, nor was I a candidate for HVP!
Women must look out for themselves and their daughters.
To put yourself in a position to be venerable to the HVP injection is not worth the risk. There are other methods to determine if one is contagious.
I’m so sorry that happened to you, Carolyn. Doctors should not be allowed to order and bill for a test that they haven’t talked to us about and we haven’t approved to receive. I would have been furious, too. Sending you hugs.