endometriosis Archives - Page 10 of 16

What if Endometriosis Was a Men’s Health Issue?

Published on October 4, 2013

4489 views

As a health journalist and a co-founder of Endo Warriors, a support organization for women with endometriosis, I often get asked “what is endometriosis?”

Which is funny since it is estimated that 176 million women worldwide have endometriosis and yet no one knows about this global health issue.

Sometimes I say “it’s a secondary autoimmune disease where the lining of the uterus is found outside of the uterus and throughout the abdominal cavity — to varying degrees — causing chronic pain and infertility.

And other times I say “it sucks.”

Nancy Peterson of the ERC said “If 7 million men suffered unbearable pain with sex and exercise and were offered pregnancy, castration or hormones as treatment, Endo would be a national emergency to which we would transfer the defense budget to find a cure.” And, I don’t disagree.

If 7 million American men had unbearable pain every time they ejaculated, no one would ever suggest chopping off their balls. If they went to a health clinic that also offered pregnancy prevention services, we wouldn’t shut those clinics down. If 7 million American men were in pain every time they masturbated, urinated or tried to have sex we wouldn’t tell them “it’s all in their head” or “to take the pain like a man.” No, we would listen and try to find them a cure that didn’t include castration or drug-induced de-masculinization.

But that’s not the case.

Instead we have 7 million American women with chronic pain related to the tissue in their uterus and their menstrual cycle. 7 million American women who have pain before, during and after their menstrual cycle. 7 million American women who experience pain while exercising, having sex and going to the bathroom. So we offer them chemical-menopause and hysterectomies and when those don’t work we throw our hands up in the air and say “well, at least I tried.” Better luck in your next life, perhaps you’ll come back as a man.

The menstrual cycle is the butt of all jokes directed towards women. Bad day? Is it your period? Is Auntie Flo in town?

Seeing red? Are you on the rag?

No, actually I’m just mad that the idea of healthcare for women makes people want to cover their ears and run screaming.

Free birth control for women?

Great idea!

That is until some political pundit insinuates women should just learn to shut their legs.

Maybe instead we should learn to listen to the myriad of women on birth control for issues beyond planning pregnancies. Maybe women should just get easy access to low cost birth-control without having to recite their medical record.

October is health literacy month and when it comes to health literacy, Americans are kindergartners trying to eat the paste off their fingers.

We think Obamacare and the Affordable Care Act are two different things; getting outraged at the notion of Obamacare yet think the idea of ‘affordable’ healthcare is quite nice.

Access to low-cost health care for everyone? Let’s shutdown the government!

Rather, if we want the government out of our private healthcare, then how about they get out of our uteri as well?

Endometriosis – Not Just a Reproductive Disease

by Philippa Bridge-Cook, PhD

Published on October 2, 2013

5301 views

Endometriosis is generally thought of as a reproductive system disease, probably owing to the fact that one common symptom is painful menstrual periods, and that it can cause infertility. The truth is that this is not solely a reproductive disease at all. It can affect the reproductive organs, but it also commonly affects other organ systems such as the intestines and bladder. More rarely, it can also affect areas outside of the pelvis altogether such as the sciatic nerve, the diaphragm, and lungs, and even the calf muscle. In addition to pelvic-specific symptoms such as pelvic pain, bowel and bladder dysfunction, and painful intercourse, many women with endometriosis report systemic symptoms such as fatigue and general malaise, and women with endometriosis have a higher incidence of many diseases such as autoimmune diseases, allergies, inflammatory bowel disease, and even a slightly increased risk of ovarian cancer. The links between endometriosis and these other diseases are not well understood.

Many people may be familiar with the fact that endometriosis is caused by misplaced tissue in the pelvis that forms lesions, cysts, and nodules. However, given its reputation as a reproductive disease, most people expect that it usually grows on the reproductive organs—the ovaries and the uterus. This has been found not to be the case, and even though the work demonstrating that the most common locations for lesions are not the ovaries or uterus was published in the medical literature 24 years ago, the misconception still persists to this day, even among physicians.

Dr. David Redwine, a pioneering laparoscopic surgeon, published a study of the distribution of endometriosis in the pelvis by age group and fertility in 1989. This study described the locations of endometriosis in the pelvis in 132 consecutive patients undergoing laparoscopic surgery. The most common area where endometriosis was found, in all age groups, was the cul-de-sac, which is the area behind the uterus, between the uterus and the rectum. The next most common areas were the ligaments of the pelvis (the broad ligament, and uterosacral ligament, with the right side being involved more often than the left). After the ligaments, the bladder was most commonly involved, and then the left ovary. Then the fundus of the uterus (the top end, opposite the cervix), the sigmoid colon, the right ovary, then finally the Fallopian tubes, the round ligaments, and the abdominal wall.

This study also suggested that, contrary to the popularly held belief that endometriosis spreads to more pelvic areas over time, it does not in fact spread. Lesions can grow and deepen over time, leading to more significant symptoms and potentially organ damage. However, in this study, older women as a group did not have more areas of the pelvis involved by endometriosis than younger women, which is what would be expected if endometriosis did spread in location over time.

The most interesting thing about this study is perhaps not the results themselves, but the fact that 24 years later, the results and their implications for treatment have not been incorporated into practice by many physicians treating this disease. First of all, endometriosis as a multisystem disease requires surgical expertise that often goes beyond what most gynecologists are trained to deal with. And yet many gynecologists who do not have the surgical skills to remove endometriotic tissue from sensitive areas like the sigmoid colon still continue to treat these patients, even those with complex disease, rather than refer them to specialists.

More importantly though, the dismissal of endometriosis as simply a reproductive system disease seems to lead to a lack of understanding of the debilitating symptoms it can cause. Studies on the quality of life for women with endometriosis have shown that women still continue to suffer from frequent symptoms including chronic pain, that impair their quality of life, even after treatment for their endometriosis. The severe pain experienced by many patients with this disease is dismissed in a way that pain from other diseases doesn’t get dismissed. Nancy Petersen, a recognized patient advocate, and Founding Director of the first Endometriosis Excision Treatment Program in the U.S., has compared the pain of endometriosis to the pain of acute appendicitis. During acute episodes of endometriotic pain, patients are often offered Tylenol or naproxen by physicians—would physicians even consider offering those medications to a patient with acute appendicitis? How long will the undertreatment of endometriosis pain persist by many physicians because of the misguided perception that it’s just a “women’s problem” and therefore can’t be that serious or painful?

Endometriosis and the Gut – What Monkeys Can Tell Us About the Disease

by Chandler Marrs, PhD

Published on September 30, 2013

3685 views

Female monkeys bred in captivity develop endometriosis at rates similar, if not a little higher (~20%) than those of the general population of women. Histologically, the endometriotic tissue in monkeys is identical to that in human women. Clinically, however, by the time symptoms present in monkeys or are recognized by their caregivers, the endometriosis has fully invaded the peritoneal cavity and the severity of the disease is often significant. With similarities in disease expression and because full medical necropsy (autopsy) reports are kept on all animals raised in captivity, investigating endometriosis in monkey may provide insight into this complicated disease process. Indeed, the few studies that have addressed endometriosis in monkey populations demonstrate clues overlooked in human research.

Risk Factors for Endometriosis in Monkeys

Like women, the risk factors in monkeys include, familial history, age, estrogens and environmental exposures. The link between estrogens, specifically estradiol implants, increases significantly with repeated exposures. Monkeys who have had more than three estradiol implants over the course of their lifetimes were nine times more likely to have the disease than their counterparts. Similarly, connections between environmental toxin exposures and risk of endometriosis have been noted.

An interesting finding in monkeys, perhaps not identified in humans, is a link between uterine surgery (hysterotomy), such as c-section or abortion and increased risk of ectopic endometriosis, by as much as five-fold. The theory being that the surgery ‘seeds’ the disease process by releasing the endometrial cells into the peritoneal cavity. Laparoscopic surgeries do not appear to increase risk, but the data are limited.

Gut Microflora

Like human women, female monkeys with endometriosis often have intestinal involvement with bowel movement irregularity, and as the disease progresses, visible endometrial implants along the large and small intestines. The presumption is that the damage to intestines arrives from the outside in; that is, from the endometrial tissue growth bearing down on the intestines and other organs. What if, there are factors within the gut that predispose or at least increase the risk or severity of intestinal involvement? It turns out, there may intestinal factors that influence disease progression – the intestinal microflora.

In recent decades, our understanding of the importance of gut bacteria has increased significantly. We know that there are good bacteria and bad bacteria and that shifting the balance between those bacterial populations can lead to a host of health problems. In monkeys with endometriosis, the balance of bacterial power is significantly shifted in favor of yeast over-growth, gram-negative microbes and general intestinal inflammation. Compared to healthy controls, monkeys with endometriosis had significantly lower concentrations of lactobacillus, the good bacteria combined with significantly higher concentrations of gram negative bacteria such as E.Coli, Salmonella, the families of Enterobacteria, Klibsiella and Proteus. Additionally, intestinal inflammation was more prevalent in monkeys with endometriosis than in healthy monkeys. Is there a connection between gut bacteria and endometrial pain or gut bacteria and IBS? With the former, there is still too little research to tell, but relationship between gut bacteria and IBS is becoming more clear.

Gut Microflora, Irritable Bowel Syndrome and Probiotics

Irritable bowel syndrome (IBS) and endometriosis often co-occur. IBS can be misdiagnosed or pre-diagnosed ahead of endometriosis. Research suggests altered intestinal microflora in IBS similar to that identified in the monkey research described above, with reduced lactobicillus bacteria in combination with increased gram-negative bacteria. Endometriosis was not a variable. Could probiotic treatment improve IBS and by extension endometriosis related intestinal symptoms? Possibly.

A recent double-blind, placebo controlled study investigated whether a six month treatment protocol with probiotics relieved the common IBS symptoms of abdominal pain, distension, bowel movements (diarrhea and constipation), flatulence and stomach rumble. The researchers found a median reduction of symptoms 42% in the probiotic group versus the placebo group. The largest and statistically significant reductions were observed in abdominal pain and distension with few significant improvements in the quality or constitution the the bowel movements.

Though probiotics are common supplements in complementary care, no studies that I can identify have looked at either the gut bacteria in human endometriosis patients or evaluated the use of probiotics with these patients. With limited research from the monkey studies, however, perhaps we ought to look at the role of intestinal microflora and in women suffering from endometriosis. At the very least, restoring the balance of gut microflora could improve overall health. Moreover, I can’t help but think that as more and more studies link endometriosis and autoimmune diseases to alterations in micronutrients like vitamins A, B and D, damage to and/or changes in gut microflora might be involved.

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The Endo Diet – Part 1

by Kelsey Chin

Published on August 30, 2013

7091 views

Earlier this year, Stage IV Endometriosis clenched its grip on my body. Desperate for help, I began researching the Endo Diet, and everything I could about my disease. I had heard from an emergency room doctor and several other endometriosis patients that an anti-inflammatory diet, like the one designed by Dr. Weil, could help with the pain. I completely wrote this off as a placebo effect, and couldn’t understand how food could touch my pelvic pain.

One late evening, I curled up with my trusty heating pad and a copy of Dr. Andrew Cook’s book Stop Endometriosis and Pelvic Pain. The information I found in this great resource (which I read, cover to cover, before shoving it into my husband’s hands as homework) completely changed my outlook on food and its role in managing my chronic disease.

The basic idea is that endometriosis is fueled by estrogen. In our modern world, where genetically modified organisms (GMOs) and uber-processed foods abound, external sources of estrogens can be found almost everywhere you look. We have all heard about the risks associated with BPA-containing plastics and GMOs, but what about the foods we already consider healthy? Many different chemicals and even natural foods contain properties that create excess estrogens, or compounds that mimic estrogen. Not only are you fueling your body while eating a seemingly healthy snack of soy beans, you might unwittingly be fueling your worst enemy: endometriosis.

I was already scheduled to undergo excision surgery when I made the switch to the “Endo Diet,” which is basically an anti-inflammatory/anti-estrogen-increasing diet. I began with a daunting step: one month complete detox. I went on a strict gluten, soy, dairy, sugar, chocolate, caffeine, and alcohol-free regimen. On top of that, I began eating only organic foods. It sounds far worse than it really is. The best way to approach this change is to think of these foods as allergies. I have a peanut allergy, which I developed in my early twenties, and I became conditioned to think of peanuts as a dangerous food. As much as I once loved peanut butter, I have developed an aversion (as anyone would after experiencing anaphylaxis!). I tried to approach this in the same way: if I eat these foods, I will feel sick.

Surprisingly, I stayed satisfied despite dropping my favorite foods: pastas, Greek yogurt, cheese, and desserts. I tried to stay away from substitutes for a while, which makes it easier to envision this as a new lifestyle. By the time I had my surgery, my bowel symptoms that I had just accepted as my “normal” became a thing of the past. No longer was my belly bloated, painfully bound, or leaving me rushing to the restroom. This, of course, is hard to attribute entirely to the diet, since I have bowel endometriosis, but it certainly points to some definite benefits when added to proper treatment.

Not only were some of my symptoms relieved, but over the course of 6 weeks, I lost close to 15 pounds! After my excision surgery, when my detox period was finished, I began reintroducing foods (one at a time) to see if I could pinpoint which foods were really a problem. I found that gluten, soy, and dairy all had correlations with different bowel symptoms, so those have become big no-no’s for me. Sugar and chocolate have not caused any symptoms, but I still try to keep them as “limited” foods, meaning I will allow small amounts, unless I can use a healthier option. One reason to limit chocolate is that most packaged chocolates include soy lecithin. While not enough to make me queasy, I still want to make sure I am not getting much soy. I also do not use white, processed sugar in my own cooking (I use honey, maple syrup, or agave nectar), and I try to make my own chocolate treats with baking cocoa instead of buying processed foods. I still allow myself a treat here and there, but I do my best to make my own foods at home, where I can control the ingredients. Finally, because I am trying to get pregnant, I do not drink alcohol or coffee, but drink decaffeinated teas once or twice a week.

I see many women considering or trying to adhere to the Endo Diet with questions about what is OK to eat, or hoping for new ideas. It sounds like you subsist solely on fruits and veggies! Well…I kind of do! The bulk of my food is fresh, organic, or locally grown fruits and veggies. I like to talk to the local farms about their use of pesticides, and make my decisions to buy non-organic based on their farming techniques. To be honest, it is HARD to find quality, fresh, and affordable organic food, so I have a few local places I feel comfortable buying from, even though they aren’t certified organic farmers. I wash those fruits and veggies thoroughly. Any meat that I buy, however, I make sure is organic, and if possible, grass-fed. Chicken is especially important, because of added growth hormones.

To stay full, and keep long-lasting energy, I snack on nuts (no peanuts, of course!) and make sure I have enough fiber and protein with beans and meat. Gluten-free oatmeal has become my new best friend, and I love my Smitten Kitchen cookbook, which includes an amazing recipe for homemade granola. It’s quick, delicious, and a great on-the-go breakfast. I use coconut oil in almost everything I make, and eggs are another great source of protein in the morning.

So what are some foods I eat on the Endo Diet? Take a look!

Here, you see fresh vegetables I bought at local farms, which I ate raw, chopped up in stews and served over rice, sliced and sprinkled in a salad, or simply steamed.

A good friend came over the other day, and I made a delicious snack of fresh fruit, homemade granola, and tea.

I prefer to use organic honey, but this honey is from a local farm on protected land, staffed by volunteers. I couldn’t resist!

When I’m feeling a bit run-down, a smoothie is a delicious way to get fresh fruit, a little rice milk, and good-ol’ H2O into the system. Below, you’ll find my recipe.

I’ll continue to share my favorite foods and recipes, but today, I made this delicious smoothie. Even my husband liked it, which is fairly pretty uncommon when it comes to my Endo Diet.

Farm Fresh Peach and Blueberry Smoothie

2 peaches
1 cup of blueberries
1/4 cup vanilla rice milk
2 Tbs raw honey
handful of ice cubes

Wash, pit, and chop the peaches. Wash the blueberries, letting impurities and stems float to the top of the water for removal. Add all ingredients in a blender or food processor. Blend roughly 1-2 minutes, or until smooth. Serve as a drink, or freeze into popsicles, and enjoy this delicious evening treat!

Kelsey is an Early Childhood Educator and blogger from the Boston area. She chronicles her journey using sewing as a positive outlet while living with chronic pain and Stage IV Endometriosis. Diagnosed at 22, Kelsey has spent six years learning about her disease, and has recently become active in Endometriosis research and advocacy. She is a published poet who dreams of writing children’s books, and opening her own preschool that supports reading development. To read more about Kelsey’s daily dabblings in sewing, as well as recipes, preschool curriculum ideas, and information about endometriosis, visit her blog at www.silverrosewing.blogspot.com

From Lupron to Fibromyalgia, Hashimoto’s, Pericardial Effusion and More

by Kerri

Published on August 29, 2013

7310 views

My name is Kerri. I was diagnosed with Stage IV Endometriosis when I was 27 years old. I am here to share my story about Lupron so that hopefully someone else does not have to go through what I have gone through and what I am still going through.

I suffered through years of horrifically painful periods when I was in high school. My cramps were often so bad that I would be crawling around on the floor every month. I would develop fevers from the inflammation and the pain. I started getting sick a lot. I was dismissed by almost every doctor I went to. I just consistently heard, “You are young, don’t worry about it, “or “You are just stressed out.” But I know my body and I knew something was wrong. My hormonal fluctuations were also a nightmare. I suffered waves of depression and extreme irritability. It was not until I was rushed to the hospital for pancreatitis that my doctor noticed a deformity in my uterus through a CAT Scan. I decided to see a new gynecologist and he immediately sent me for a pelvic ultrasound. I had cysts everywhere. After my first laparoscopy, I was diagnosed with Stage IV Bilateral Endometriosis. All the visible endometriosis was removed along with the cysts.

I continued to be proactive and go for regular pelvic ultrasounds. Unfortunately, the cysts and endometriosis progressed rapidly. My doctor said I was the most progressive case he had ever seen. I then went on to see a Reproductive Endocrinologist. He did an in-office ultrasound on one of my visits and told me I needed immediate surgery. After surgery, I was told that the endometriosis had spread rapidly to my entire pelvic region as well as my kidney, my liver, my bladder, and my intestines. He said to me, “We are going to start you on Lupron. Your case is too progressive. This is your only hope.” I was also told I would never be able to have a child of my own.

I went home and researched Lupron myself. There was nothing, but horror stories about it online. I was especially concerned with the alarming amount of fibromyalgia diagnoses’ after use of Lupron. I addressed my concerns to my doctor. He reassured me by saying, “You can’t believe everything you read on the Internet. This is a good drug.” I decided to trust in my doctor, even though my gut instinct was telling me not to take this drug. However, I was living a life of pain and wanted desperately to get my life back.

I received my first dose of Lupron through injection August of 2007. I was told that my only side effect would be hot flashes. I never got a hot flash from Lupron. Instead, I experienced crippling fatigue and involuntary muscle twitches and facial tics. At the end of the month I still got my period. Lupron is supposed to suppress your period. I called my doctor and told him. He did not seem concerned. Therefore, in September I received my second Lupron injection. My fatigue and muscle twitches increased and I, again, got my period at the end of the month. My third and final shot of Lupron was administered in October. I remember being at work and saying to my co-workers, “I don’t feel right. Something is not right.” Every muscle in my body ached and my joints were hurting. I could not bend my fingers. I put a call into my doctor. I was not able to reach him, but spoke with the Nurse Practitioner. I told her what my symptoms were and she just told me, “That is not from Lupron.” She seemed annoyed that I kept asking questions. I had to call out sick to work the next day because my entire body hurt. It took me a week of calling everyday to even get the doctor on the phone and the only answer I did get from him was, “You must have a virus. Go see your regular doctor.”

I went to see my regular doctor. I told him my situation. He went home and researched Lupron on a website that he used for his own practice. He called me personally and said, “I don’t know why your doctor told you that this drug doesn’t cause fibromyalgia because it does.” I will forever regret deleting that voicemail message by accident. Needless to say, my reproductive endocrinologist never saw me again. I, also, have not been able to work full time since October of 2007. My life was forever changed.

I was sent to a rheumatologist and was diagnosed with fibromyalgia. I was bed ridden for six months. I went from walking 2 miles a day to not being able to go up and down the stairs without pain. All of my muscles felt like I had spent the day lifting weights when I had actually been in bed all day. I ached from my head to my toes. I had to resign from my job teaching children with Autism. It was too physical and I could no longer handle it. My entire world had been turned upside down. I was offered Lyrica for my fibromyalgia, but after my experience with Lupron I was terrified to try it. My immune system crashed and in the following months I was diagnosed with thyroid disease, fluid around my heart, Epstein Barr virus, vitamin deficiencies, and food allergies. In addition, the Lupron did nothing for my endometriosis. It was still growing and spreading.

In February 2013 my bladder shut down and I was completely catheterized. The belief was that the adhesions, scar tissue and cysts were causing the bladder problems. Therefore, in April of 2103, I underwent a full hysterectomy. My bladder, unfortunately, is still not operating on its own and I have also been diagnosed with a neurogenic bladder. This is concerning because I was born with only one kidney and a neurogenic bladder is one of the main causes of kidney failure. My urologist believes I may be a candidate for a bladder pacemaker which may or may not even work.

It has now been six years since I took Lupron and I still experience all the side effects from it. It is my opinion that this drug shut my immune system down and led to all of my other health problems. I have done so much research and numerous women are experiencing the same side effect. This NEEDS to stop! I struggle everyday with the memory of the life I used to lead. It is a sad realization when your life stops, but the rest of the world keeps living. It sounds silly, but I would love to go back to the days where endometriosis was my only health concern. I have tried my best to become my own health advocate and it pains me to say that I have lost faith in those doctors who treat on a universal level, rather than a case by case basis. It is my hope that my story can help spread awareness and maybe help someone else out in the end.

There is not a day that goes my where I wish that I didn’t listen to my gut instinct that day. I have lost my career, my health, my finances, and most of my friends in the process. I have been humbled by this and never take good moments for granted. I would love a day of no pain. I have to believe that if I keep fighting, there will be some light at the end of this very long, grueling journey. I hope the universe will allow me the opportunity to pay it forward.

To learn more about Kerri’s health struggles, click here.

Participate in Research

Hormones Matter^TM 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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Angela’s Lupron Story

by Angela Wice

Published on August 28, 2013

4958 views

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.

Participate in Research

Hormones Matter^TM 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.

Endometriosis After Hysterectomy

by Rosemary Finnegan

Published on August 27, 2013

11794 views

My name is Rosemary and I have been dealing with endometriosis for the past 21 years.

I had my first laparoscopy in 1992 due to sudden onset of pain from a ruptured ovarian cyst. They found endometriois on the right side. Over the years, the endometriosis spread to the left side, bladder and intestines.

I had a total abdominal hysterectomy in 1995, when I was only 28 years old and only two months after having my youngest daughter. My daughters are miracles and I am extremely lucky to have them despite these issues. I was convinced to have the hysterectomy after the 6th laparoscopy for endometriosis. This was after the right ovary, tube and appendix were already removed and I had tried many techniques for pain management including acupuncture, acupressure, hormones, Lupron, Depo Provera, meditation and many strong medications. I would try anything, I told one doctor that I would sacrifice a chicken in the corner if that would help. Unfortunately the pain was relentless. It was and is a constant, stabbing, twisting pain.

During the hysterectomy they found Stage 4 endometriosis all throughout the abdominal cavity. Unfortunately the doctor didn’t remove the endo during the surgery. They just removed the left side ovary and tube, uterus and cervix. The day after the surgery I was given Premarin. The pain returned with a vengeance within 6 months. This is when the real “fun” started. I had to find a doctor that understood endo after hysterectomy. I have had 14 more surgeries since the hysterectomy. In each one and over ten years after the hysterectomy they found live endometriosis. The hysterectomy did not resolve my endometriosis. The endometriosis was deep in the peritoneum, along the bladder, on the intestines and it kept returning. After each surgery I would get about 12-18 months of relief.

I worked with many different doctors from OB/GYN’s to renowned reproductive endocrinologists and general surgeons who specialize in adhesions. During each surgery they found many thick adhesions gluing my insides together. I had my last surgery in Atlanta last year at the Center for Endometriosis Care and they were fantastic. I had relief for about 13 months. Unfortunately the pain has returned.

I have returned to pain management doctors. This is such a frustrating disease. I have had many doctors tell me I was “just stressed,” or that because I am a single Mom with two daughters, I’m just depressed and the pain is in my head. I have also had amazing doctors who have listened and explained the disease and how they can help. I have had countless tests that show nothing and yet every laparoscopy has shown either severe adhesions or residual endometriosis or issues that need to be corrected.

The best advice I can give is trust yourself! You know your body better than anyone and if you aren’t getting a doctor to listen, find another one! Be your own advocate and educate yourself on this condition. There has been tremendous progress made in the last 10-15 years. I am sure they don’t give Premarin right after hysterectomy anymore and I would hope they are removing the endometriosis during the surgery and not leaving it to grow as they did with me.

There are a whole list of issues with not being able to take hormones. I have tried many substitutes including soy and phytoestrogens and some combinations work better than others. There are some very good holistic treatments and everyone has a different experience.

I hope this has provided some insight. I am not a medical person, I am actually a finance executive and through research and articles from great sources I have learned a lot about endometriosis. There needs to be more awareness and discussion on this, as there are way too many women suffering. Good luck and God Bless!!!

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Recurrent Miscarriage

by Philippa Bridge-Cook, PhD

Published on August 7, 2013

4080 views

When I was pregnant for the first time, one night very early on in the pregnancy, I had a dream that my baby was going to be a little boy with blond hair and blue eyes, a little mini version of my husband. Eight years and six miscarriages later, I did give birth to a little boy, and oddly enough, the consensus is that he looks just like my husband. Those eight years before our son was born were filled with emotional highs and lows, and I still ask myself: why did I, and so many women like me, end up with so few answers about my miscarriages?

Recurrent miscarriage, defined as more than three consecutive pregnancy losses, affects about one percent of women. Although there are some known causes (the most common is antiphospholipid syndrome), which have effective treatments, for 50 percent of women with recurrent miscarriages, all diagnostic tests are normal and no cause can be found. In this group of women with unexplained recurrent miscarriage, the prognosis is fairly good, as many of these women will eventually have a successful pregnancy without any treatment. However, research suggests that the group of women with unexplained recurrent miscarriages may actually be made up of two groups. In one group, the miscarriages are due to chance alone, and women in this group have an excellent chance of eventual success. In the other group, there is an underlying problem that is not identified by current clinical investigations, and this group has a much poorer prognosis.

During the time I was trying to have a baby, I saw four different doctors (three gynecologists and eventually, a reproductive endocrinologist). I had many tests, and they all seemed normal. I was a relatively healthy 28 year old. I was told that if I just kept trying, I might eventually be successful. Although that approach is understandable given the potentially good prognosis for some women, it was difficult for me to believe that it was true, and it was even more difficult to consider getting pregnant a fourth time without trying some sort of treatment. Instead of trying to get pregnant again, we decided to adopt, and my husband and I were lucky enough to adopt two newborn girls, 15 months apart.

As the girls got older, we decided to try to get pregnant again, and see if my doctors could offer any new approaches. It felt to me that if I at least tried something different, that I could have some hope for a different outcome. My doctors tried various fertility treatments with the rationale that perhaps just increasing the number of embryos would result in one that could “stick.” I never got pregnant on fertility treatment despite a seemingly good response to it. Because I had always had painful periods that were worsening as I got older, I asked every doctor I saw about endometriosis and every time was told: “Endometriosis causes infertility. If you are getting pregnant, you don’t have endometriosis.” During that time, I had three more miscarriages.

Eventually I made my way to a reproductive endocrinologist. She agreed with my other doctors that there was no apparent reason for my miscarriages. However, by that time I had a large mass on my ovary, and I had laparoscopic surgery and was diagnosed with endometriosis. According to the scientific literature, there is insufficient evidence for a link between recurrent miscarriage and endometriosis, although it’s possible that many women with recurrent miscarriage have undiagnosed endometriosis, due to the assumption most doctors make that women with endometriosis are always infertile. My doctor did not think that my endometriosis was related to my miscarriages. However, she did decide to treat my miscarriages with a “cocktail” of medications: heparin injections, progesterone, low dose prednisone, and low dose aspirin. The rationale was that there was probably some undiagnosed problem causing the miscarriages, and the cocktail could cover a range of potential causes such as hormone imbalance, autoimmune issues, and thrombosis (which is known to be associated with recurrent pregnancy loss, through antiphospholipid syndrome).

The month after my endometriosis surgery I was pregnant again. I immediately started taking medications once I found out I was pregnant. Two days before Christmas we saw the baby’s heartbeat by ultrasound, but on Christmas morning I started bleeding. Six long weeks of watching and waiting began—I had a subchorionic hemorrhage, bleeding between the gestational sac and the uterus. Although this is not uncommon (3.1 percent of pregnancies), with my history it was worrisome, and I was on limited activity or bedrest until it resolved at 13 weeks. I could barely believe it when my son was finally born, healthy and full-term.

My doctors said that the endometriosis surgery had nothing to do with the fact that I finally had a successful pregnancy, even though the coincidence of having success only immediately after that surgery makes me wonder. Or perhaps my success was due to one or more of the medications I took during the first trimester—the recurrent miscarriage cocktail prescribed by my doctor. Having been diagnosed with a bleeding disorder recently (see my story here), five years after that pregnancy, I now realize that the heparin and aspirin were exactly the wrong medications to give me and probably exacerbated the subchorionic bleeding. But maybe the prednisone or progesterone, or both, were helpful. Or maybe it is just that I ended up being among the percentage of women with unexplained recurrent miscarriages who will eventually succeed without any treatment.

As a scientist, I wouldn’t normally be inclined to agree to the sort of treatment I ended up receiving for my miscarriages: they were hit or miss treatments, some of which were untested for safety during pregnancy (the prednisone), and all of which had no proven efficacy from clinical trials for treating unexplained recurrent pregnancy loss. However, as a woman with six prior pregnancy losses, I probably would have tried anything I thought had a hope of helping, as long as the risk seemed minimal. More research into this area is critical, so that other women don’t have to decide whether to choose treatments with unknown side effects and effectiveness, or no treatment at all, with the emotionally devastating risk of another miscarriage. Unfortunately, such research does not seem to be a high priority for our society.

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Where health, hormones, and a whole bunch of other stuff, make sense.

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