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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.

 

 

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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.

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

To sign up for our newsletter and receive weekly updates on the latest research news, click here.

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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.

Lucine Medical Disclaimer: All material on this web site is provided for your information only and may not be construed as, nor should it be a substitute for, professional medical advice. To read more about our health policy see Terms of Use.

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My Surgery – Endometriosis

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Part Two of My Story: Surgery for Endometriosis

I think before my surgery I felt I needed validation for my own mind as well as from my family that this pain was real. For some reason I knew I had Stage IV just by the symptoms I had.

As the surgery approached, I had a consult with my surgeon. I was given the rundown of what to expect and what he was going to do. He told me he would remove all of the endo scar tissue and do a presacral neurectomy (remove the nerves that send pain messages to the brain). However, he failed to mention to do a bowel prep. Because I was researching endometriosis and other disease all those years, I knew to do it anyways and thank God I did.

The surgery was 4-5 hours long, but I was told prior that it would only be 2-3 hours. So needless to say, my dad was up-in-arms and in a panic as to why it took so long. I came to find that out once I was in the recovery waiting room. I just told them to tell him that I was fine and not to let him in. It would cause me too much anxiety, as he gets too worked up.

Post Surgery Problems

While I was in the recovery room, I realized that I couldn’t pee. I was in so much pain that finally after an hour they put the catheter back in. I swear I felt like my bladder was going to explode. I was put on a Morphine IV drip, but the pain was so intense I swear I thought I was dying…literally. I wasn’t allowed to leave the hospital until my bladder emptied so I had to explain to them that my bladder never empties ever, so they let me leave the next day.

What the Surgeons Found: The Extent of my Endometriosis

The surgeon’s assistant came in after the surgery and told me that the doctor reviewed the surgery with me. I had to correct her by saying that if he had reviewed it with me, I was not coherent. I felt this was pretty odd – why would you talk to someone when they were not even awake?

She began to tell me I had stage IV Endometriosis and described to me that everything inside of me was wrapped behind my uterus and stuck to my bowels. She said they made 4 incisions due to the prior bowel surgery and they did excision for most of the surgery but used laser lysis for extensive bowel and pelvic adhesions.

The list of procedures was shocking. They did a bilateral salpingolysis, ovariolysis, right ureterolysis, restoration of the cul-de-sac, deep pelvic floor dissection of recto-vaginal septum, laparoscopic resection of colonic intestinal lesion, resection of sigmoid mesenteric endometriosis (which was benign), bilateral ovarian cystectomy, laparoscopic presacral neurectomy and intra-operative sigmoidoscopy. There was extensive scar tissue from my bowel surgery when I was 7 years old, so that took a lot of time to remove.

With all of this surgery, how was it that no one could figure out what was wrong with me for all those years? Wouldn’t it have been obvious if they had looked?

Recovery

Thanks to all my BBBC friends they told me what to bring to the hospital and what to expect for recovery. I was well prepared, however I was a single mother and it was hard for the first week as my daughter was 4 and needed a lot of attention. My mom took her for the week, so that helped out a lot. I made sure to bring mints for after the surgery when your mouth is pasty, a pillow for the ride home for the bumps on the road, lots of movies and magazines for the week as you don’t do anything but lie down for that whole time. One thing no one ever mentioned was passing a blood clot the size of a book!! I was completely freaked right out. It happened once, but never again.

Post-Surgery Hormones

I was put on Lupron right after the surgery as well, with add back therapy. It took about one week for the pain to leave my shoulder from the gas from the surgery, two weeks to go back to work and about a month or two to go back to normal. The Lupron did not sit well with me at all. I had immediate depression, joint and muscle pain, and chronic headaches. I stayed on it for three months because that is all I could tolerate from it. I went back on the Marvelon and have pretty much been on it up until recently. It took a very long time for the Lupron to get out of my system.

Back to Dating

I have been a single mother since my daughter was five weeks old and I didn’t really date.  I didn’t know if it still hurt to have sex or not. Since I lost my virginity, there has always been pain with sex. It has never felt good at all and was almost like torture. In 2010, I met my future husband and we started having sexual intercourse. For the first time in my life, I had absolutely no pain whatsoever. That came to an abrupt end a month or two later, when I started to bleed during and after sex.

To be continued.

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My Battle with Endometriosis and Migraines

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Twenty-Five Years for the Correct Diagnosis: Endometriosis

My name is Angela Wice and I am 35 years old. I had one child with natural birth in 2003 and was diagnosed with Stage IV endometriosis June 2006. My Journey has been long, depressing and still not over 25 years later. Here is my story.

 

Early Childhood and Early Troubles

I was a very busy active, athletic, child growing up.  I would say besides being born with jaundice, I was healthy until I turned 7 years old. I was rushed to the hospital because I started bleeding rectally. I was operated on within hours of being at the hospital for intestinal volvulus and appendectomy. They sewed my bowel to the pelvic wall so it wouldn’t happen again.

By the age of 10, I started to get chronic headaches and was told to stay away from chocolate, peanuts and cheese.

The Pain of Endometriosis

I got my first period when I was 13. The second time I got my period is when the pain started. I had the worst cramps ever, my legs would go numb, I was nauseated, I was bloated, and I was in so much pain I would vomit. I remember them saying that you should only bleed 1 TBSP a period and I was like “Are you kidding me, I do that in an hour!!”

My mother took me to the doctor the same year. The doctor did an ultrasound and a transvaginal one as well. The pain was so bad on the left side when she inserted it inside me but other than that nothing showed up but she did say that I possibly had endometriosis. That was at 14 years old, nothing was done about it. I was given Naproxen and that was that.

Endometriosis and Migraines

My first migraine happened when I was working at around 16 years old. My whole right side went numb including my tongue. I went to the hospital and they said it was an Aura Migraine.

By 17, I was far beyond constipated and the rectal pain I had was so severe and sporadic. To be honest, I never really put two and two together because I could just be driving and all of the sudden it felt like was being stabbed with a knife in my rectum. That never went away. It was constant.

I knew I was getting my period because I would, all of the sudden, not have constipation and I mean literally evacuate all my bowels at one time. That was my sign to start taking the Advil, and by the next morning or the middle of the night there it was. Sometimes if I didn’t take the Advil in time it was too late, nothing would work. I would pump my system with so much of it until my period was over. During my period I could not have a BM at all until my period ended. It was excruciating. I got fed up went to see a gastrologist. I had a colonoscopy and was told it was IBS, which I did not believe. That was the first of over 40+ doctors/specialist I was to see until I was diagnosed.

Endless Misdiagnosis

For the next 15 years it became a blur.  I was depressed, angry, frustrated, disappointed, rejected and in so much pain that never seemed to end.  I went to doctor after doctor only to be diagnosed with fibromyalgia, chronic fatigue syndrome, restless legs syndrome, thoracic outlet syndrome, TMJ, irritable bowel syndrome, chronic pain, cluster migraines, complicated migraines, neuropathic pain syndrome, overactive bladder, depression, anxiety and I developed an eating disorder (Bulimia).

I was at the end of my rope in 2006 and had another ultrasound only to find out my results were misplaced until I called 3 months later to find out that I had a 10cm complex cyst.  I was sent to an oncologist who took blood work CA125 to see if I had cancer. The first test done was 37 on my period and 78 when I was ovulating. He felt positive it was endometriosis and sent me to a local gynecologist who told me nothing could be done about the Endo and to take Lupron. I refused, as I had done my research. She then put me on Marvelon21 and sent me on my way. One thing changed for sure right away from taking the birth control pill and that was the chronic nausea was gone within a week, acne cleared up and my mind was right. I really felt like I got a new lease on life.

The Power of Patient Groups

I ended up on Medhelp and found a great group of women that to this day we still talk. We have a private group of about 20 women on Facebook called the BBBC (Bulge Battling Battalion Cysters). Some of the women had cancer, some were in remission, some had Endo etc. They were my support and still are, without them I would have surely not been here today.

I did my research and found the best Endo doctor in Ontario. It took 3 minutes for him to find the rectovaginal cyst that had caused me so much pain all of these years. I was in tears, tears of relief that finally, finally someone knew what was going on. He couldn’t do the surgery because I had previous bowel surgery so he sent me to his protégé and he operated on me a month later.

My story continues. More next week.

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