lupron pelvic pain

Using Lupron to Diagnose Endometriosis: Fact or Medical Fiction

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Lupron or Leuprolide is prescribed regularly for endometriosis, fibroids and undiagnosable pelvic pain. The evidence supporting its use is sketchy at best. Perhaps the most troubling practice is the use of Lupron to ‘diagnose’ endometriosis, an indication for which there is little evidence.

Can Lupron Response Indicate Endometriosis?

According to a report by the Practice Committee for Reproductive Medicine, No.

“The gonadotropin-releasing hormone (GnRH) agonist Lupron has been advocated to diagnose and treat endometriosis without performing laparoscopy, based primarily on the results of one study involving 95 women with moderate to severe chronic pelvic pain unrelated to menstruation. In this study, participants were randomized to receive depo-leuprolide 3.75 mg or placebo injection monthly for three months followed by laparoscopy. The underlying premise was that improved pain symptoms during the hypoestrogenic state induced by GnRH agonist treatment might reliably indicate that endometriosis was the cause.”

What the research found, belies the utility and subsequent marketing of using Lupron to diagnose endometriosis. Pain relief in response to Lupron was not significantly different in those who did or did not have detectable endometriosis at laparoscopy (81.8% vs. 72.7%, respectively). That means, even by the company’s own research the response to Lupron did not and could not accurately diagnose the endometriosis.

Do I Really Need Laparoscopy to Diagnose Endometriosis?

“My doctor said that if I get better on Lupron it means that I have endometriosis. He said I might as well take Lupron now and not wait for the laparoscopy.”  In other words, is the currently popular practice of using a GnRH agonist (e.g. Lupron) as a treatment for endometriosis without doing a laparoscopy first warranted? No, it is not and here’s why.

Lupron pre-laparoscopy has become common practice since the publication of a study by the drug’s manufacturer (no bias there) several years ago. The study showed that 82% of women with pelvic pain that had not responded to milder pain medications or antibiotics were shown to have endometriosis. When Lupron was given and the ovaries temporarily shut off, pain improved. However, pain was also reduced in the women who did not have endometriosis. This happens because hormones made by the ovaries influence pain perception. Therefore, if pain gets better after Lupron is given, it does not necessarily mean that the pain is due to endometriosis. Failure to understand how hormones, pain, endometriosis and Lupron interact leads to an incorrect diagnosis in at least 25% of cases. In addition, many forms of endometriosis do not respond to this drug. Its expense and high level of side effects (e.g. rapid loss of bone calcium) also make it a drug to be used with caution. Our experience is that using the drug before doing a laparoscopy most often delays, but does not eliminate, the ultimate need for laparoscopy.

Is Laparoscopy the Only Way to Diagnose Endometriosis?

Yes. Laparoscopic inspection of the pelvis is the gold standard for diagnosis of endometriosis. There is evidence in abundance qualifying the need for laparoscopic inspection to confirm the diagnosis – and effective treatment of – endometriosis. A non-invasive diagnostic test would be especially useful in the endometriosis and gynepathology community, indeed; however, despite ongoing research and development of many, many such potential tests and markers, not a single one has achieved benchmark and can be relied upon to diagnose endometriosis accurately. Moreover, medical therapy, like Lupron should not be used as evidence of a diagnosis. Medical therapy has never ‘cured the disease’.  Medical therapies like Lupron are used merely to temporarily suppress some of the symptoms associated with endometriosis; it is neither long-lasting nor wholly effective, and it is not without serious side-effects.

Are all Laparoscopic Techniques the Same?

No. You will need to find an expert in laparscopic excision for endometriosis. Meticulous laparoscopic excision (LAPEX), has significantly superior results to not only obtaining diagnosis through histological confirmation, but also to removing disease effectively while preserving healthy tissue and organs. Some specialty centers have rates as low as 7-10% recurrence in their patient populations as far as 20 years out from initial excision. The recurrence rate for ablation and vaporization, on the other hand, are very high – ranging around 40-60% within the very first year following surgery; some as high as 77% within the first 2 years. Superficial ablation and other topical removal of only obvious lesions results in disease left behind and in many cases, depositing carbon which can be painful on its own – as well as be confused for endometriosis at later surgical re-intervention [Nezhat et al.].

Of course; it goes without saying – all of this notwithstanding: what matters most is whether the patient is adequately relieved of her pain. For that, Lupron is most certainly not indicated.

Lupron Side Effects Survey

To determine the rate, range and scope of side-effects associated with Lupron use in women’s health,  Lucine Health Sciences and Hormones Matter are conducting an online survey: The Lupron Side Effects Survey. The survey is anonymous and takes only 15 minutes to complete. If you are woman who has ever been prescribed Lupron, please take a few minutes to complete the survey. Your data will give other women the information they need to make a decision about Lupron.

About the Authors: The Center for Endometriosis Care is a COEMIG-Designated Center of Excellence in Minimally Invasive Gynecologic Surgery which was founded over two decades ago by renowned laparoscopic excision (LAPEX) pioneer Robert B. Albee, Jr., MD, FACOG, ACGE.  The Center is run under the leadership of Medical Director Ken R. Sinervo, MD, FRCSC, ACGE along with a caring, compassionate staff.  We continue our efforts as architects of the legacy in gold standard endometriosis care.

You Cannot Do This to Us Anymore! Lupron Does Not Work

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My Lupron Endometriosis Nightmare

It was my 26th birthday. My boyfriend and I were entangled in an intimate moment, when I felt my body seize in an all too familiar pain. My body tensed up, forcing me to launch into fetal position and kick my boyfriend halfway across the room.  As he looked at me in complete and total shock, I realized, ‘It’s back’, and curled up in a ball crying.

I had my first excision surgery for endometriosis when I was 24, and hadn’t given much thought to my endometriosis growing back before that episode. Due to a change in insurance, I was forced to see a new gynecologist. Scared and in pain, I did what I thought was right, what any inexperienced patient would do, and put my body, future, and pain management all in her hands.

The Lupron Journey Begins – How Bad Can it Be?

Having previously exhausted every birth control measure, I assumed a second surgery was in order. Instead, she suggested Lupron. Things were different then; the online health-space was mid-development and there were barely any resources dedicated to helping women like me. At the time I thought, “She’s the doctor, she knows better than I do, and even though it sounds awful; how bad could it be?”

The answer was bad, worse then I could have even imagined. Almost immediately, I had awful reactions at the injection sites. My skin became hot and sore, making it hard for me, a preschool teacher, to move around or even sit. I spent days sitting on ice packs, pillows, and heating pads.

Maybe Lupron Does Work

I’ll admit for the first few months I felt better, and I even thought “Wow! What a miracle drug!” I started running again, I was working more and going out with my friends more. I even participated in a 5K for charity. Even my libido was unaffected, actually it went through the roof. I was back on top, despite the school nurse having to see my rear end once a month.

Maybe Not – Lupron Hell

It wasn’t until about 3-5 months into the treatment that all hell broke loose. My Lupron side effects were off the charts and my pain had returned. I was experiencing hot flashes, night sweats, and a major increase in appetite. Within a few months I had gained 20 pounds.  For a slender 5’3″ woman, being over 140 lbs made me feel uncomfortable in my own body. I found myself having awful mood swings, and bouts of depression; my memory was incredibly foggy, prompting my boss to comment that I often seemed in a daze.  I was having migraines and insomnia. Even with Add-back therapy, I suffered immensely.

I wanted to scream at my doctor for ever putting me on this drug. Despite being miserable and wanting out, I was forced to stay on it for 12 months (twice the recommended time). This also wasn’t a doctor in the middle of nowhere, but rather one of Time Magazine’s best doctors, associated with one of New York’s best hospitals. I assumed I must be in good hands, and needed to follow her recommendation. However, my doctors felt a successful patient was one who got pregnant. Although I was a 26 year-old, broke preschool teacher with no immediate plans about having children, it seemed this fact had slipped their minds, along with any concern as to my quality of life; or rather lack there of. Thankfully a second opinion from another specialist gave me the courage to advocate for myself, and to demand to be taken off the drug and given other treatment options, of which I was originally told there were none.

Long Term Side Effects of Lupron

I still have lasting side effects from Lupron. My ovary is enlarged, and ovulation is excruciating. I continue to suffer from night sweats, memory loss, and weight gain. I feel as if l poisoned myself for 12 months.

Now, 4 years later, I have an excision specialist and a diagnosis of deep infiltrating endometriosis, which has required two additional surgeries. Even though I still have pain, I am confident that I have doctors who care about me and will listen when I say I’m in pain, or when I’m not interested in a treatment. If you feel like you know more than your doctor or they’re not listening; then its time to leave.

From Patient to Patient Advocate: The Birth of Endo Warriors

I have used my pain and frustration to co-found an endometriosis organization called Endo Warriors (links below) to help give support and resources to women with endometriosis.

I am writing this article because I want women to know that this drug is not helpful for women with Endo. Lupron was meant for men with prostate cancer and not for women suffering from endometriosis. It does nothing to shrink the disease or for pain management, and in turn makes us sicker. I had little to no issue with my ovaries before and now I have transient cysts, an enlarged right ovary, and excruciating pain with ovulation. This drug is dangerous and it’s not being used correctly. We need treatments that help; we need a cure, not this poison. We need doctors who care! It’s time for us to stand up and shout, “You can’t do this to us anymore!”

What makes me angry is that some doctors refer to this drug as a cure, others as “your only option” when clearly it isn’t. Many women can use it effectively if surgery was not effective, but at what cost? Is the risk of ovarian function worth it? Are the lasting side effects worth it? Doctors need to be honest with their patients and give them resources so we can make better informed decisions about our treatment. Since that doesn’t always happen, I hope everyone learned a thing or two from my cautionary tale. I’m not saying don’t take Lupron, because it might be the right treatment for you. I’m saying that I don’t trust the drug or the research behind it. I believe it was the wrong treatment for me and probably is for many, many other endometriosis patients.

Information about Endo Warriors

If you are battling endometriosis and would like support from other Endo Warriors please contact us:

Email- endowarriors@gmail.com

Facebook- https://www.facebook.com/pages/Endo-Warriors/496001373757588?ref=hl

Twitter- @endowarriors and @jillybean126

Participate in Research

Hormones MatterTM is conducting research on the side effects and adverse events associated with Lupron. If you have taken Lupron, please take this important survey. The Lupron Side Effects Survey.

To take one of our other Real Women. Real Data.TM surveys, click here.

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