endometriosis Archives - Page 10 of 16

Seeking the New Normal: A Letter to Those With Chronic Illness

Published on October 29, 2013

10.5K views

This article was written for women trying to cope with endometriosis, but it applies to a much broader audience. Others have addressed the lack of understanding in chronic illness and one of the best is the website “But you don’t look sick” and The Spoon Theory written by the website owner, Christine Miserandino: ButYouDontLookSick.com: A community for support, education, and inspiration. Take a minute to read The Spoon Theory. It is helpful for family and friends trying to understand chronic illness and its very real impact on life and relationships.

Waiting for Normal to Return

Newsflash, it’s not going to happen; even if you find a successful treatment or surgery and reach freedom from pain. Normal shifted when you were not looking. You have been through hell pain-wise, often diagnostic-wise, and sometimes you did not get the help you needed. Life has changed because of these very traumatic and difficult episodes of pain and medical interventions. When dealing with chronic illness, nothing remains the same.

While we wait for normal to reappear, we are often in the stages of grief, loss of the quality of our lives, sometimes our partners, our fertility, other times our overall health, loss of the support of those around us, either because we got better and are no longer the dependent needy person on the couch with the heating pad, or because we did not get better but are now stronger, more knowledgeable, more confident in our decision making as we become more educated. As we work through our losses and our wins if they come, we are looking for our familiar life. Often those around us are looking for our “old self” and they find it hard to recognize and cope with the new, grieving, perhaps stronger, more independent person.

The literature reflects the thinking of several experts in the grieving field, and I have one link posted here: The 5 Stages of Loss and Grief | Psych Central.

Chronic Illness Changes Us and Our Relationships

While waiting, it gradually dawns on us that where we are now is the first step in the new normal in our lives. Sometimes that is uncomfortable because it is so unfamiliar. And if your life has changed dramatically for better or worse, those around you are pretty uncomfortable as well. The dynamics of your interactions are changing, and it requires joint efforts to reconnect on this new level. Sometimes those re-connections do not go well, and you find yourself looking at a parting of the ways, or intense therapy to try to find the common bonds.

I am aware of cases where women were in so much pain and so dependent that family or spouses were continual care givers. When pain and disability were resolved, these same caregivers no longer were needed in that role. This dramatic disruption of the routines in care giving can add inordinate stress to relationships and family life.

When we are prepared for and aware of this potential, we can sometimes talk it through as we begin to see changes take place, or pain resolved. In some cases just accepting that fertility will never be resolved, can be a source of pressure from spouses, significant others, partners or potential grandparents. These folks may not recognize they too are grieving and that what their expectations have been all along may never be met.

My Story: The Way Around

For me, the first 18 months after I retired, I was confined to a power chair, not the life I had dreamed of (fishing the Cascade lakes, gardening, hiking the great Central Oregon outdoors). Pain was a constant companion, sleep just never came. Gradually as the diagnostic hurdles began to give clarity to my situation, it was clear that unless I figured out what this new normal was going to be like, and adapted to it, I would never get out of the chair, nor have any of the retirement about which I dreamed and planned. Actually, this was a very good lesson in: Life is what happens to you while you were making plans.

Physicians now in charge of my case began vigorously working on getting pain and stability under control, still no one saw me casting a fly line or turning a garden bed anytime in my future. I began to read about adaptive gardening, got a power scooter that would work better in garden paths, found an old tractor with a front end loader on it. I could barely even get up on the tractor when I first got it, I was in such bad shape. I found some help to build raised garden beds in exchange for organic vegetables. I found ways to bring water to the beds so I did not have to pull hoses around. This is enough of the story, to try to show, I think, building a new reality with what physical capacity I had left, could maybe restore, or could adapt around. I think you get the idea, that instead of muscling through, which I could not do, I tried to find a way around. I had to let go of a little, though, too. My spine simply will not tolerate fishing, so a little interest in photography began to fill in those gaps.

Create A New Normal

I hope I have at least given you the idea that if things don’t return to normal as you want, you can begin to create a new normal. It may take some experimentation, trial and error, and may even require developing new tools or hobbies, or even a new life entirely. But, in time, you can do it. Let go of searching for the old normal and move on into a new way of being with whatever resources you have or can muster.

About the Author: Nancy Petersen RN (retired) graduated from Tacoma General Hospital School of Nursing in conjunction with University of Puget Sound. She spent 40 years in active nursing and the time since retirement as a volunteer patient advocate for endometriosis patients. In 1984, she literally stumbled into a lecture Dr. Redwine was giving about his research on endometriosis. In time, she came to understand it was a game changer for women with endometriosis.

She along with David Redwine MD established the nation’s first comprehensive conservative surgical treatment program in Bend Oregon, which quickly developed an international patient base.

She spent 12 years traveling and lecturing on Modern Concepts in Endometriosis which arose out of Dr. Redwine’s published research. She consulted with Dunwoody Hospital in Atlanta on the establishment of Dr. Robert Albee’s endometriosis treatment program, The Center for Endometriosis Care.

She volunteers her time on Facebook on several pages related to education and discussion of endometriosis and serves as an advisory board member to the Endometriosis Research Center.

A Long and Complicated History Topped by Levaquin: Please Help

by Destini Bates

Published on October 21, 2013

10.4K views

A long and complicated medical history topped by Levaquin

Here is my story from the beginning. Well, not my beginning, but the beginning of what seems to be a downward spiral health wise. Please help us figure this out.

Two Pregnancies and Cervical Cancer

In 1998 at the age of 22, I became pregnant with my first born son. A normal pregnancy and natural delivery. Upon my six week check up after delivery, they found abnormalities in my pap smear. With further investigation, I was diagnosed with cervical cancer. The doctor said it was as if the wallpaper was cancer but the sheet rock and wood was not affected. I had a LEEP procedure that removed the damaged area with a good portion of my cervix. I was advised that if I wanted more children, I should do so within the next two years, because any further complications would mean a hysterectomy.

In 2000, I became pregnant and delivered my second child, a daughter. The pregnancy was a little more complicated. They feared my cervix would not hold well enough to get her to full term. During the pregnancy, I was diagnosed with hypothyroidism, likely due to autoimmune dysfunction. As a child, I developed vitiligo, an autoimmune disorder of the skin.

The birth of my daughter was natural, although she came four weeks early. The doctors were still investigating my thyroid condition and eventually determined that I had a big goiter and thyroid nodules. The endocrinologist said that the nodules were too small to biopsy, and though he could not say positively that they were benign, he thought that they were. I was instructed to just continue with my thyroid replacement hormones.

Endometriosis and Partial Oophorectomy

In 2004, I experienced terrible pain in my pelvic area. All testing came back normal and the doctors originally dismissed my pain. It got so bad that I could not even sit down without terrible pain. The doctor took me in on a emergency basis and an internal ultrasound showed a mass in my pelvic region. My local doctors believed it to be cancer, as it showed all of the characteristics of malignancy. I was sent five hours away to a cancer specialist. They performed an open surgery to explore the area and remove the mass. Pathology showed it to be benign, so they removed my left ovary and tube. I was diagnosed with endometriosis.

Autoimmune Disease

In 2005, I became very ill. It started with what they believed to be an infection. Later, I was diagnosed with mononucleosis. I was told that my Epstein Barr numbers were through the roof. I literally could not get out of bed. My body hurt so bad that moving, other than to get to the bathroom, pretty much did me in for the day. I was placed on a medical leave at work. Blood testing revealed high levels of antinuclear antibody (ANA) in my blood. My local doctor thought that I may have Lupus. I was referred to a rheumatologist who diagnosed me with Fibromyalgia and Chronic Fatigue Syndrome. After six months, I returned to work.

Hysterectomy and Complications

In 2006, after years of suffering with terrible periods and a few more abnormalities on my pap smear, my OB decided it was time for a complete hysterectomy. My first night in the hospital seemed to be smooth, but in the morning things took a change. I was on a morphine pump for pain, and though I had no pain from my pelvic region, I was having pain in my chest and my left arm. The nurse said my oxygen level was extremely low. The next thing I remember was doctors running in everywhere. I was rushed to CT and then to ICU where I spent the next few days. To this day, I do not know what happened. I got the doctor’s reports. They concluded that it was either a pulmonary embolism or a coronary event. Although, at discharge the doctor told me he thought it was anxiety.

Thyroidectomy, Lung Mass and Fatty Liver

During this time and through following the thyroid diagnosis I always felt awful. No energy, extreme fatigue and weight gain of in total 70 pounds.

In 2007, I developed an illness in my stomach and bowels. The first diagnosis was gallstones. I had surgery to remove the stones. They kept me in the hospital overnight because of the incident the last time I had surgery. I had an endoscopy a few days prior to surgery, and they found I had ulcers and tested positive for H pylori. I got C diff from the hospital and had to deal with that on top of everything else. A colonoscopy revealed that I had ulcerative colitis.

In 2010, my goiter was growing to the point that swallowing and sometimes speaking became an issue. My endocrinologist felt that those symptoms, coupled with the nodules, meant it was time to remove the thyroid. I had a thyroidectomy that year with no complications other than severe fatigue and a struggle to get my levels right.

In 2011, a minor fall left me with a torn meniscus and knee surgery, really not important, I know.

In 2012, I was diagnosed with mono again and the symptoms of pain in my abdomen called for a CT. In receiving the results, I was told I had a 7mm nodule in my right lung and a fatty liver. My liver levels had been high for a few years. I was sent to a pulmonary doctor at the Lahey clinic in Massachusetts. He said that because of my young age and the fact that I had never smoked it was likely not cancer, but that we needed to recheck in six months. My six month checkup revealed another nodule and I returned to Lahey clinic for another consultation. He again said that it did not have some of the characteristics of malignancy and because it was small our best bet was to rescan in another six months.

The Current Nightmare – Enter Levaquin

So this brings me to my current nightmare, one that has continued for seven months. It began on Easter Sunday. I had been sick with what I believed to be pneumonia as my husband had just had it, and I seem to get whatever is going around. We visited the local Emergency rooms and I was diagnosed with pneumonia. They gave me a pill to take while in the ER room. I asked what it was, as my husband was given a Z pack. She told me Levaquin and I took it without question, as it meant nothing to me at the time. We waited for the discharge paperwork and left with a few different pills and and a prescription to continue Levaquin for 10 days.

By the time we reached our house, 20 minutes away, I was itching all over. Hives began to form and my face and ears were starting to swell. I went to a different ER that was 5 minutes away. The rushed me in and administered IV prednisone and Benadryl. I was put on oxygen. After about an hour, symptoms started to slow and I was released. As the reaction was going on, I felt like I was crazy. I think, or at least thought at the time, that it was from the itching. By the time we left the hospital, all I could think about was breathing.

I felt that if I did not concentrate on my breathing I would forget to breathe.

My discharge instructions were to continue with oral prednisone for 3 days and take Benadryl every 4 hours for the next 24 hours. Monday, I slept all day. That evening, I decided I could not take anymore Benadryl. When I came out of what felt like a drug induced coma, I was scared, very frightened actually.

I could barely speak and I did not want my husband to leave me.

I am a very independent person and me feeling like I needed him was not usual. I was very different and it alarmed my husband. He felt it was the prednisone and would not let me take anymore. I finally begged that he let me take another Benadryl to sleep, as I was scared and hating the way I was feeling and functioning. My head hurt so bad that I felt like it may explode.

Tuesday this continued and I could not get off the couch or speak clearly.

Wednesday we returned to the ER. I underwent a CT scan which came out normal and the ER doc felt it was migraines. He dismissed the fact that it could be the Levaquin, as it was only one pill. I was treated with migraine medicine and released.

At first I felt a little better, but some of the symptoms would not go away. I had a limp with pain and weakness on the right side of my body. My neck and shoulders hurt so bad that I could not lay down. The headache seemed unending. I laid around feeling not myself for days.

I recognized my kids but could not come up with their names. I started calling objects by different names, wrappers for socks, and looper for bra, talker for phone.

By Monday my husband brought me to the walk-in clinic, as my doctor was away and the ER had proved to not be of much help. We shared all of the pain and symptoms.

The doctor concluded that it was anxiety and gave me Tramadol for the pain.

The next day my husband brought me to my primary care physician and she was mortified by my condition. She sent us straight to the ER and said she would call them to let them know I was coming and my condition. I was still in terrible pain my head mainly and my right side. I was sent for an MRI that came back normal and underwent a lumbar puncture. It took the radiologist four tries to get the spinal tap and then she forgot to get the pressure.

I was admitted to the hospital for further testing. I had a magnetic resonance angiogram (MRA) and numerous blood tests. I had debilitating pain that left me feeling like I literally may die. I could not stand the light, the nurses had to hang blankets from the windows. The littlest noise hurt me horribly. My husband stayed by my side, as I was still nervous to have him leave me.

I was released a few days later with a slew of different migraine medicines and an appointment to see the neurologist.

The neurologist and her staff were not my favorite from the get go. The nurse asked if something was wrong with me, as I could barely speak and continued to grunt in pain. She changed my medicines and sent me for an EEG that same day. She called a few days later.

I was having seizures in my left temporal lobe.

She prescribed Keppra and left it at that with no follow up appointment or anything. She did mail me a paper about epilepsy. The Keppra did not work well for me. I became very nasty and most of my words were very colorful.

After two weeks, we went back to that neurologist and she was gradually going to reduce the Keppra and start me on Lamictal. The next week I went to see another neurologist that was four hours away.

She said that I had status epilepticus and sent me right to the ER for an infusion of Dilantin.

The next day I returned to be almost myself. I was talking better and acting more like myself.

This sickness has also changed my personality. I say silly things and giggle after everything I say, most of which is inappropriate. I act very childlike or like someone who has mental retardation.

After two days, I slipped back into my previous state. This continued for months the medicine was too low, requiring me to take more than twice the recommended amount, then too high. After two more EEGs both showing slowed brain waves on my left temporal lobe, I was sent to a big hospital to have a long term EEG. There they found the same slowing/episodes that happened 8 to 15 times a day.

I was taken off the Dilantin and started to become myself again. I lost over 20 pounds in month without trying. I was getting around and helping around the house. I was regaining interest in some of my previous hobbies and wanting to rejoin society. This continued for a little over a month. Then, I started feeling bad again.

My cognition remained improved, but my body and my head felt as they did in the beginning of this nightmare. One evening, at my nieces birthday party, I started having pains in my head.

My hearing became very acute. Everything was magnified in sound and my vision again became very blurred.

We left immediately, and by the time we were home, I could barely speak.

My jaw hurt and felt like it could hardly move. My head was aching so bad and my fear had returned.

I have regressed into my previous state and that has continued for two weeks now. I was referred to the neuro-ophthalmologist who said I have pappiledema severe in my right eye and mild to moderate in my left. My neuro thought that I may have a tumor somewhere in my body and my immune system, as a result, was attacking my brain. This is because the testing for paraneoplastic syndrome came back showing positive striational antibodies.

This week I had a PET/CT scan and an third spinal tap. The PET scan showed no abnormalities, although I was given the disc and there is a clear hot spot, at least to my untrained eye, but I guess I need to trust the experts. The spinal fluid was being sent to the Mayo Clinic for testing. For the past weeks, I have had terrible pain in the left half of my face, including my ear, my jaw and near my temple. I know it is not a sinus infection, as I get them regularly and can spot them in an instant. I am not sure if its an infection, but I am inclined to think it is another chapter in this book. I will list some of my symptoms, diagnosis and current medications.

Current Symptoms

Headache, daily
Blurred vision
Magnified hearing
Increased anxiety and fear nothing like before
Right sided weakness
Numbness in tingling in my extremities
Memory impairment
Cognitive deficits
Fatigue
Body Pain
Weight Loss 20 pounds (yay)
Eye pain
Poor judgment
Child like behavior
Clumsiness
Lack of coordination
Lack of focus and inattention
Restlessness
Insomnia

Current Diagnoses

Encephalitis
Temporal Lobe seizures
Status epilepticus
Encephalopathy
Papilledema
Paraneoplastic Syndrome
High Blood Pressure
Acid Reflux
Fibromyalgia
Chronic Fatigue Syndrome / Mono

Current Medications

Synthroid 200 mg
Lamictal 125 mg 2 times daily
Fluoxetine 40 mg
Prtonix 40 mg
Linsopril 10 mg
Vivelle patch (estrogen 100 change twice weekly)

The blood pressure medications and estrogen are new in the last two months.

Please Help

I apologize for the length of this documentation. I want to sincerely thank you for any time and consideration you put into this. I certainly know that it is not your responsibility or obligation. I have two beautiful children and this has taken a severe toll on them. I have gone from a mom who was involved in every aspect of their lives, to a mom who is constantly afraid of causing them shame. In this, I have lost my job and an income, which means paying an incredible price for cobra insurance. I feel like we are up against a wall and running out of possibilities. This is no way for anyone to have to live. I am willing to entertain or try pretty much anything at this point. Thank you again, this means the world to me, just to gain some insight.

With Gratitude and Appreciation.

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What if Endometriosis Was a Men’s Health Issue?

by Jordan Davidson

Published on October 4, 2013

7.2K 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

8.9K 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

5.9K 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

10.8K 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

12K 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.

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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

9.6K 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.

Hormones Matter

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

endometriosis - Page 10

Seeking the New Normal: A Letter to Those With Chronic Illness

Waiting for Normal to Return

Chronic Illness Changes Us and Our Relationships

My Story: The Way Around

Create A New Normal

A Long and Complicated History Topped by Levaquin: Please Help

Two Pregnancies and Cervical Cancer

Endometriosis and Partial Oophorectomy

Autoimmune Disease

Hysterectomy and Complications

Thyroidectomy, Lung Mass and Fatty Liver