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Lupron and Endometriosis

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Leuprolide, more commonly known as Lupron, is promoted within the gynecological field as one of the best options for treating endometriosis. Lupron is also used for men with prostate cancer and children going through precocious puberty. Endometriosis is a secondary autoimmune disease where the lining of the uterus (the endometrium) grows outside of the uterus, breaking down and bleeding in conjunction with a woman’s regular menstrual cycle. The displaced endometrium, having no way of leaving the body causes scarring, cysts, internal bleeding, chronic pain and infertility.  There is currently no cure for endometriosis. Current treatments include laproscopic surgery, oral contraceptives, partial or complete hysterectomy and GnRH agonists such as Lupron.

What is Lupron?

Lupron in a GnRH agonist which puts the female into a chemically induced state of menopause and is often associated with serious side-effects. According to Dr. David Redwine, a gynecologist with over 30 years of experience treating endometriosis, “The state of menopause with Lupron is very unnatural, not only because it is chemically induced with medicines, but because FSH levels are not elevated as they are in normal menopause. Lupron temporarily stops menstruation but does nothing to eradicate endometriosis from the woman’s body.”  What Lupron does do is suppress the body’s pituitary-gonadal system potentially causing an onslaught of endocrine, neural and immune side-effects.

Side Effects

While this list is not all inclusive, it does however, include many of the more commonly reported side effects of Lupron: 

  • fatigue
  • hot flashes
  • depression
  • insomnia
  • joint pain
  • decreased bone density
  • loss of sex drive
  • vaginal dryness
  • loss of appetite
  • weight gain
  • nausea
  • changes in bowel patterns
  • acne
  • facial hair growth
  • increased body hair growth
  • breakthrough bleeding
  • dizziness
  • night sweats
  • chills
  • muscle pain
  • overall feeling of physical weakness
  • stomach pain
  • constipation
  • diarrhea
  • vaginal itching and/or discharge
  • breast swelling or tenderness
  • memory problems
  • changes in urinary control
  • skin redness and itching
  • headaches
  • blurred vision
  • diabetes
  • convulsions
  • hair loss
  • anemia
  • fibromyalgia like symptoms
  • hyperglycemia
  • ECG changes

The Lupron and Endometriosis Connection

Given the general lack of knowledge and sparsity of endometriosis specialists – it almost makes sense that a drug that stops menstruation and induces a hormonal standstill, would be effective in treating endometriosis – almost.  However, Lupron does not cure endometriosis nor does it effectively treat endometriosis.  What it does cause is a host of painful side effects which can last long after the drug’s maximum 6 month dosage.

As a co-founder of Endo Warriors, a support group for women with endometriosis, I have spoken to countless women with endometriosis who have been prescribed Lupron for their endometriosis.  Of these women, I have never heard one say that taking Lupron either helped their symptoms or provided any decreased endometriosis progression. Instead I have heard several stories of women developing thyroid disease, women experiencing hot flashes and breakthrough bleeding as painful as if they were menstruating, women in their late twenties coming off Lupron with bone densities resembling those of women in their late sixties, and stories of developing fibromyalgia and chronic fatigue.

Despite the adverse consequences of Lupron being known within the Lupron-prescribed portion of the endometriosis community, the dissemination of that knowledge generally stops there. In fact, there are plenty of websites that describe endometriosis as a common and treatable reproductive disease – going on to cite Lupron as not only an effective but an optimal treatment. While endometriosis is indeed common, with 176 million sufferers worldwide, it is not easily treatable.  And unfortunately, none of those 176 million women will see a cure until some honest dialogue take places regarding the challenges in treating endometriosis and credible evidence regarding the safety and efficacy of Lupron and other prescribed treatments for endometriosis is available.

Lupron Side Effects Survey

To determine the rate, range and scope of side-effects associated with Lupron use in women’s health,  Lucine 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.

 

 

Lupron or Laparoscopy to Diagnose Endometriosis?

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I recently had my first pre-operative appointment for the diagnostic laparoscopy I’m having soon. I was nervous, and had a list of questions for my doctor. This was the second gynecologist I’d seen to discuss diagnosing endometriosis; my other doctor is too elderly to operate. She was frank and very straightforward.

 

“There are two options for diagnosis: a laparoscopy and chemically-induced menopause with Lupron. If we do a laparoscopy and find nothing, we still have other diagnostic options. It’s a good sign that you’re doing better after a brief time on hormone-replacement therapy and then extended-course birth control. If we do find nothing, we’ll try Lupron, which will chemically induce menopause. If Lupron doesn’t work, you don’t have endometriosis, and you’ll be looking at other tests. 

We’ll schedule you for one more pre-operative appointment where you can ask all the questions you have and you’ll register with the hospital where the surgery will be performed. You’ll go home the same day, and you should take it easy for three days. In two weeks, you’ll have a follow-up appointment where we’ll go over what we found inside your pelvis and check your surgery sites for infection. 

Then, assuming you do have endometriosis, we’re going to evaluate you every six months to a year. You’re going to tell me how much this disease is affecting your quality of life. If the pain and immobility returns within a year and your current treatment options stop working, we’ll try inducing menopause. 

Lupron has its risks, but it allows us to achieve valuable steps both in terms of symptoms and diagnosis. You’ll get an injection every three months. When you decide you want to try pregnancy or want to stop the course of treatment, you’ll stop the shots and return to your natural hormone cycle. The effects of this shot are reversible. If you do have endometriosis, Lupron will relieve all your symptoms. We’ll also know for certain that this is endometriosis. If you still experience pelvic pain and cramping while using Lupron, you don’t have endometriosis. The side effects may be intense, but it’s something to consider if you get worse over the next few decades.”

I told her I was worried about the surgery itself. It’s a very common diagnostic procedure; it’s minor surgery and thousands of women undergo it every year. However, a close relative of mine underwent a diagnostic laparoscopy in her early twenties for endometriosis and her doctors decided to give her a hysterectomy. Obviously, her health history was somewhat different and it was medically necessary. Still, it’s hard to sign up for a small procedure if you could wake up without one or both ovaries or all your reproductive organs.

She asked me when this happened. It was the 1970s. She leaned forward and said, “That was a very long time ago, and medicine has come a long way since then. The biggest difference is that there were no female surgeons and very little research on the risks of hysterectomies on very young women. We’re not going to remove any of your organs, no matter how bad the extent of your endometrial implants. You’re much too young, and your imaging shows no tumors or large cysts. There’s no reason to put you through that. You may decide you want to have children later in life, but that’s not the main motivation for keeping your organs. Where do your hormones come from?”

“My ovaries.”

“Yes, and they’re very important to your overall health. You need to keep them. If you were 50 and approaching menopause, we’d be having a different conversation. I want you to write down any questions you may have, but I don’t want you to be concerned with keeping your organs.”

We then went over what a laparoscopy is. I’ll be put under anesthesia and my abdomen will be inflated through my navel. The surgeon will insert an instrument to manipulate my uterus. She will then insert a very small camera through my navel and a cauterizing tool. If she finds evidence of endometriosis, she will use the cauterizing tool to ablate, or burn away, the endometrial tissue. I thought this would take hours. She said it should only take a very short time; the large time frame for the surgery is to regulate my sedation and anesthesia. After the ablation, my abdomen will be deflated and they will move me to recover from the anesthesia. I’ll go home the same day.

In another week, I’ll have one more pre-operative appointment where I can discuss some of the questions raised from responses on this site and register with the hospital where the surgery will be performed. I’m anxious, but I’ve done some research and feel comfortable with my choice of surgeon. With any luck, I’ll have a diagnosis and a treatment plan within another month.

Please note, Lupron can neither diagnose nor confirm endometriosis. Lupron was never approved for such uses. For more information, please click here: Lupron.

Participate in Lupron 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.

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Endometriosis in Teenagers

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The endometriosis patient who elicits from me the greatest form of empathy and compassion is the patient whose pain begins in her teenaged years or even earlier. This young woman has doubts and fears when she thinks her incapacitating symptoms are the norm. She believes that everyone feels as bad as she does during her period (or apart from menses, if her symptoms are not confined to her periods), and so she concludes that other girls handle things better.

She starts to wonder, “Am I a wimp? Do I have to live like this for the rest of my life?”

These feelings of inadequacy are deepened by often well-meaning but uninformed people including coaches (“Working out will make your cramps better”), parents (“Your sisters never complained like you do about this”), and girlfriends (“Don’t be such a baby! It’s just your period!”). Many times the afflicted teenager grits her teeth and tries to tough it out.

When her symptoms do not improve, or when they worsen, the teenager may finally be taken to a doctor, where she may experience her very first pelvic exam. If this examination is not very carefully performed, the experience can be both humiliating and painful. After the exam, the patient may be told, “Everything appears normal.” The message is, “There’s nothing wrong with you. Why do you complain so much?”

If her symptoms are felt to be severe enough, the teenager may be initiated into the world of analgesics (pain medications). Repeated visits to the physician may result in numerous different analgesics.

If symptoms persist, the patient is given ovarian suppressants in the form of birth control pills. The result is that an otherwise healthy and normal young woman is now functioning only with the help of her drugs.

Our society in general frowns on drugs, and teenagers today have especially been inundated with the message, “Just Say No!” This concept contrasts with the young woman’s drug dependency (not drug addiction) and can contribute to a gradual loss of self esteem.

She may think, “I shouldn’t take drugs, but I can’t function without them, therefore I am weak or helpless or worthless or bad.”

As endometriosis progresses in these young women, most eventually end up on the operating table for diagnostic procedures. The endometriosis is diagnosed (sometimes) and staged (sometimes). If the physician believes that there is no cure for this devastating disease, he or she may offer only analgesics or medical forms of therapy (Danocrine, Lupron, Synarel or Zoladex) which stabilize the process at great monetary expense and side effects that can be as bad as the disease itself.

The ultimate result here is that, in addition to all the other physical and psychological impacts of this type of treatment, it takes away the teenager’s hope that she will ever be pain-free to live a normal life. There is nothing I know that has a greater impact on our lives than the loss of hope. It is a primary form of torture used on prisoners of war. Is it any wonder that we find many of these young women have become angry, depressed, and totally confused?

What Can Be Done?

Thankfully, we have much to offer a young woman with endometriosis.

Make the Diagnosis Early

Young women who do not respond to simple mild analgesics and who have any suggestive findings on physical examination should be laparoscoped. Endometriosis should be considered as a possible diagnosis at any point after a girl has her first period (menarche).

Don’t be Drug-happy

If she has symptoms consistent with a diagnosis of endometriosis, it is crucial that the diagnosis be proved before subjecting a young woman to prolonged bouts of powerful drugs. Sometimes physical abnormalities can cause painful symptoms. Such abnormalities can be corrected surgically and are not helped at all by medications.

Believe the Patient

A young woman’s support group (parents, siblings, schoolmates, teachers, partners, boyfriends and girlfriends, etc.) should believe her when she reports pain and other symptoms. It is really very unusual for a well adjusted child to suddenly begin using complaints of pain to get attention.

Enlist an Expert

Facing a first pelvic examination is a little intimidating for even the most relaxed woman. Imagine, then, how frightening it can be for a young woman, in pain and worried. Find a physician who is interested in treating the entire person: not just a collection of pelvic organs.

Know These Facts!

We are now finding that well-trained surgeons skilled in recognizing all visual manifestations of endometriosis can keep recurrence rates under 20% by completely excising all disease. In the overwhelming majority of cases, surgeons knowledgeable in advanced laparoscopic techniques do not need to make large incisions during surgery. Most patients go home the same day they have surgery.

Certainly, menstrual cramps may persist, and some women will have pain around ovulation. Overall, though, I have found the ability to relieve the pain of endometriosis sufferers is one of the most gratifying things I have ever done.

When chronic pain is relieved, you will see the return of a healthy state of mind. These young women can resume their lives as they ought to be. One young woman’s parents wrote, “Thanks for giving us our daughter back.”

We think the teen-aged years are hard enough without endometriosis making them worse, and are pleased to be able to offer the opportunity for significant and long-lasting pain relief.

About the author: Robert B. Albee, MD, FACOG, ACGE is the Founder of the Center for Endometriosis Care, a COEMIG-designated center of excellence in the treatment of the disease.

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