Some women suffer from a condition called endometriosis and it can most certainly affect your weight.
So what is it and why can it cause weight gain? This is what you need to know…
- Endometriosis and how it can affect weight loss
- Endometriosis drug approved by the FDA to reduce pain
- Drug relieves pain in largest clinical trial yet
- AbbVie Receives U.S. FDA Approval of ORILISSA™ (elagolix) for the Management of Moderate to Severe Pain Associated with Endometriosis
- Replicating endometriosis pain
- Seeking clues in DNA
- Faster diagnosis?
- What is endometriosis?
- What causes endometriosis?
- How do I manage endometriosis with medications?
- What is Orilissa and how does it work?
- Early research points to possible new endometriosis treatment
- Where did the story come from?
- What kind of research was this?
- What did the research involve?
- What were the basic results?
- How did the researchers interpret the results?
- Links to the headlines
- Links to the science
- Women with endometriosis experience terrible pain. There’s finally a new treatment.
- Treatments for Endometriosis
- Although there is no cure for endometriosis, a variety of treatment options exist.
- When Endometriosis Caused Me to Face My Body Image Demons
- Considering surgery for endometriosis? Here’s what you need to know
- I Thought I Was Gaining Weight, Then Doctors Found a 20-Pound Cyst on My Ovaries
Endometriosis and how it can affect weight loss
Endometriosis is an estrogen dominant condition that causes layers of tissue, that is similar to the tissue that lines the uterus (womb), to grow elsewhere. For example, on organs including the bowel, cervix and bladder.
Not only can endometriosis cause significant pain and lead to or be linked to emotional and mental conditions, it can also cause bloating and excess fat on the hips and stomach regions.
The condition can also cause bloating and water retention, making it harder for you to feel like you are reaching your goal weight.
So how do know you have you have it and what are the symptoms? According to Healthy Mummy Nutritionist and Naturopath, Cheree Sheldon, you may have endometriosis if you are experiencing the following:
- Painful periods
- Pain before period
- Pain during ovulation
- Lower back pain
- Pain during and after sex
- Pain with bowel movements
- Pain when having a wee
- Abnormal bleeding, like super heavy periods, or spotting.
Some women however, do not experience any of these symptoms and only find out when they unsuccessfully try to conceive a baby.
There is no single reason why endometriosis occurs, as no single theory explains its pathogenisis. So, finding out the reason why it is occurring in each individual may take some time, but by exploring the reasons, you may help prevent recurrence.
The most common reasons are issues with anatomy, genetics, hormonal imbalance, exposure to environmental toxins, and autoimmunity or dysfunctional immune response.
The main medical treatments are aimed at inhibiting growths, but to do this, they cease periods, thus ceasing ovulation and fertility is not improved. Most symptoms return when stopping medications when you undertake this treatment option.
Ablation or surgical removal of adhesion is an effective treatment for stage I and II endometriosis. Yellow Wiggle Emma recently underwent surgery for endometriosis. Source: Instagram
There are very little natural-based medicines that are “evidence-based” treatments for endometriosis. Acupuncture, TCM and a Mediterranean-style anti-inflammatory diet may help.
Traditional herbal medicine may help reduce symptoms, such as cramping and inflammation, and help balance hormones.
So what can you do about it if you do suffer from the condition?
It’s best to chat to your doctor if you think you may have endometriosis. He or she is the best person to assist with your condition and help with side effects, such as weight gain, as a result.
However, exercise and maintaining a healthy and balanced diet has helped many mums with both their endometriosis symptoms and weight troubles.
Sarah Maynard, who is a Healthy Mummy consultant, reveals that she always struggled to keep an eye on the scales as she suffers from endometriosis, as well as polycystic ovary syndrome.
“It was frustrating. I had to always keep an eye on what I was eating and doing, as my weight would balloon at times due to the PCOS and endometriosis,” she says.
“At my heaviest, I was 134kg. And while I put on weight easier than most, I can’t say that I was watching what I was eating.”
“One of my friends had lost a heap of weight through The Healthy Mummy 28 Day Weight Loss Challenge, and that’s when I signed up also.
“I loved it and it was very easy to follow.”
Sarah, who now weighs 98.3kg, follows the recipes on the 28 Day Weight Loss Challenge Recipe Hub – and she says her lifestyle change is even rubbing off on her little man, who is only two!
Emily, who is also from our Healthy Mummy community, suffered a long battle with stage four endometriosis and adenomyosis. However, when she joined the Healthy Mummy 28 Day Weight Loss Challenge, she noticed incredible changes in her health.
Nonetheless, Emily’s journey hasn’t been an easy one. On Mother’s Day 2016, Emily had a total hysterectomy for stage four endometriosis and adenomyosis.
Emily says, “It was a difficult decision to have this surgery, but after years of illness my body couldn’t take it any longer. The surgery and recovery was rough, with some uncommon complications occurring shortly after my operation.”
It is important to note here that a hysterectomy is not a cure for endometriosis, but it can help women in some cases.
About 8 months after her hysterectomy, Emily started to feel well for the first time in her life, so she decided to make further strides towards improving her health.
Emily says, “In late January (2017), I joined The Healthy Mummy’s 28 Day Weight Loss Challenges and in just over four months, I have since lost 19.5kgs* and 3-4 dress sizes.
“What has been even more dramatic is how much fitter and healthier I feel.”
Since losing weight with The Healthy Mummy, Emily says everything is getting easier.
“Breathing is easier, I sleep better, I eat breakfast every day and generally have more energy. I can now walk 5+ kilometres when pre-surgery walking to the letterbox was a struggle!”
If you would like to learn more about the .
1 in 10 Australian women suffer from endometriosis and176 million women suffer from endometriosis worldwide. Endometriosis affects ALL aspects of a woman’s life.
For more information on treatment options for endometriosis read this Healthy Mummy article Endometriosis: What Is It And How Does It Affect Fertility?
For additional advice and help, head to Endometriosis Australia’s website.
You can also check out the Turnbull Government release first draft for National Action Plan for Endometriosis.
July 24, 2018 — The FDA has approved elagolix (Orilissa), the first drug developed for the treatment of moderate to severe pain from endometriosis.
The FDA approved elagolix under priority review. It is expected to be available in the U.S. next month.
Elagolix represents a “significant advancement for women with endometriosis and physicians who need more options for the medical management of this disease,” Michael Severino, MD, chief scientific officer for AbbVie, the maker of elagolix, says in a news release.
Data from two studies of nearly 1,700 women with moderate to severe endometriosis pain supported the FDA’s approval.
In the studies, elagolix reduced the three most common types of endometriosis pain: daily menstrual pelvic pain, nonmenstrual pelvic pain, and pain with sex, AbbVie says.
The company says that elagolix can reduce bone mineral density. Loss of bone mineral density is greater the longer the drug is used and may not be completely reversible after stopping treatment.
The drug should be taken by mouth at roughly the same time each day, with or without food.
“Endometriosis is often characterized by chronic pelvic pain that can impact women’s daily activities,” Hugh Taylor, MD, study investigator from Yale University School of Medicine in New Haven, CT, says in the release. “Women with endometriosis may undergo multiple medical treatments and surgical procedures seeking pain relief, and this approval gives physicians another option for treatment based on a woman’s specific type and severity of endometriosis pain.”
Endometriosis drug approved by the FDA to reduce pain
The Food and Drug Administration announce the approval of the commercial version of the drug elagolix for the treatment of endometriosis pain. This is the first time in over a decade that an oral treatment specifically designed for endometriosis pain has been approved.
Share on PinterestA new drug is shown to ease three different types of endometriosis pain.
Endometriosis is a condition affecting around 1 in 10 women in the United States, and around 200 million people worldwide.
The condition is characterized by an abnormal growth of endometrium, which is the tissue that normally lines the inside of the uterus.
This tissue growth causes pain in the pelvis, lower back, and abdomen. Other symptoms include heavy periods or bleeding in-between periods, extremely painful menstrual cramps, pain during intercourse, and infertility.
There is currently no cure for the condition, but surgery is often recommended to remove the tissue, which relieves the symptoms for a while. Birth control pills are often prescribed to slow down the growth of abnormal tissue, and nonsteroidal anti-inflammatory drugs such as ibuprofen help ease the pain.
Now, the Food and Drug Administration (FDA) have approved a new drug to ease the pain of women living with moderate to severe endometriosis.
Elagolix is “the first and only oral gonadotropin-releasing hormone antagonist” designed specifically for endometriosis.
The drug — which will be marketed at the beginning of August this year under the brand name Orilissa — is the first of its kind to have been approved by the FDA in more than a decade.
Drug relieves pain in largest clinical trial yet
The drug was approved based on the results of two studies that formed the largest phase 3 clinical trial program to have ever been conducted on endometriosis.
In total, the studies examined the effects of elagolix on almost 1,700 women who had moderate to severe endometriosis pain.
In the two studies, the women were administered either 150 milligrams of elagolix once daily or 200 milligrams twice daily.
Compared with the women who received placebo, those who received the treatment reported a significant reduction in three types of pain: nonmenstrual pelvic pain, menstrual pelvic pain, and pain during intercourse.
These results were noted at 3 months and 6 months from the beginning of the treatment.
The FDA approved the following recommended dosage and duration of use: the drug can be taken for up to 24 months in a dosage of 150 milligrams per day, or up to 6 months if the dose is 200 milligrams twice per day.
However, the clinical trials also revealed a range of side effects. The most common ones were hot flashes, night sweats, headache, nausea, trouble sleeping, anxiety, joint pain, depression, and mood swings.
The biopharmaceutical company AbbVie funded the clinical trials. Dr. Michael Severino, the vice president of the company, comments on the FDA approval, saying that it “represents a significant advancement for women with endometriosis and physicians who need more options for the medical management of this disease.”
First study author Dr. Hugh S. Taylor — the chair of the Department of Obstetrics, Gynecology and Reproductive Sciences at the Yale School of Medicine in New Haven, CT — also weighs in, saying, “Endometriosis is often characterized by chronic pelvic pain that can impact women’s daily activities.”
“Women with endometriosis may undergo multiple medical treatments and surgical procedures seeking pain relief and this approval gives physicians another option for treatment based on a woman’s specific type and severity of endometriosis pain.”
Dr. Hugh S. Taylor
AbbVie Receives U.S. FDA Approval of ORILISSA™ (elagolix) for the Management of Moderate to Severe Pain Associated with Endometriosis
NORTH CHICAGO, Ill., July 24, 2018 /PRNewswire/ — AbbVie (NYSE: ABBV), a research-based global biopharmaceutical company, in cooperation with Neurocrine Biosciences, Inc. (NASDAQ: NBIX), announced that the U.S. Food and Drug Administration (FDA) approved ORILISSA™ (elagolix), the first and only oral gonadotropin-releasing hormone (GnRH) antagonist specifically developed for women with moderate to severe endometriosis pain.1,2 The FDA approved ORILISSA under priority review. ORILISSA represents the first FDA-approved oral treatment for the management of moderate to severe pain associated with endometriosis in over a decade and is expected to be available in U.S. retail pharmacies in early August 2018.
“ORILISSA represents a significant advancement for women with endometriosis and physicians who need more options for the medical management of this disease,” said Michael Severino, M.D., Executive Vice President, Research and Development and Chief Scientific Officer, AbbVie. “The approval of ORILISSA demonstrates AbbVie’s continued commitment to address serious diseases and unmet needs.”
Endometriosis is one of the most common gynecologic disorders in the U.S.3 It affects an estimated one in 10 women of reproductive age and can be associated with pain symptoms that can be debilitating.3,4 Women can suffer for up to six to 10 years and visit multiple physicians before receiving a proper diagnosis.5,6
Endometriosis-associated pain is often managed with medicines such as oral contraceptives, nonsteroidal anti-inflammatory drugs (NSAIDs), opioids and hormonal therapies, which can work for some women but very few are specifically indicated for the treatment of endometriosis.3,7 In more extensive cases, surgical interventions (e.g., laparotomy, laparoscopy or hysterectomy) are often pursued, and may not be curative for all individuals.8
“Endometriosis is often characterized by chronic pelvic pain that can impact women’s daily activities,” said Hugh S. Taylor, M.D., study investigator and Chair of the Department of Obstetrics, Gynecology and Reproductive Sciences, Yale School of Medicine. “Women with endometriosis may undergo multiple medical treatments and surgical procedures seeking pain relief and this approval gives physicians another option for treatment based on a woman’s specific type and severity of endometriosis pain.”
The approval is supported by data from two replicate studies in the largest endometriosis Phase 3 study program conducted to date, which evaluated nearly 1,700 women with moderate to severe endometriosis pain. Clinical trial data demonstrated ORILISSA significantly reduced the three most common types of endometriosis pain: daily menstrual pelvic pain, non-menstrual pelvic pain and pain with sex. A higher proportion of women treated with ORILISSA 150 mg once daily and 200 mg twice daily were responders for daily menstrual pain and non-menstrual pelvic pain compared to placebo in a dose-dependent manner at month three. Women were defined as responders if they experienced a reduction in daily menstrual pain and non-menstrual pelvic pain with no increase in analgesic use (nonsteroidal anti-inflammatory drug or opioid) for endometriosis-associated pain.
Both ORILISSA treatment groups showed statistically significant greater mean decreases from baseline compared to placebo in daily menstrual pain and non-menstrual pelvic pain at month six. Women in the Phase 3 studies also provided a daily self-assessment of their endometriosis pain using a numeric rating scale (NRS) and women taking ORILISSA 150 mg once daily and 200 mg twice daily reported a statistically (p <0.001) significant reduction from baseline in NRS scores compared to placebo at month three. Clinical trial data also demonstrated women taking ORILISSA 200 mg twice daily showed statistically significant greater reduction in pain with sex from baseline to month three compared to placebo.
The recommended duration of use for ORILISSA is up to 24 months for the 150 mg once daily dose and up to six months for the 200 mg twice daily dose, as it causes a dose-dependent decrease in bone mineral density (BMD). BMD loss is greater with increasing duration of use and may not be completely reversible after stopping treatment. For women with moderate hepatic impairment, the recommended dosage is 150 mg once daily for up to six months. ORILISSA is recommended to be taken orally at approximately the same time each day, with or without food.
“Together with AbbVie, we are proud to offer a treatment option for the many women suffering from pain associated with endometriosis,” said Kevin Gorman, Ph.D., Chief Executive Officer of Neurocrine Biosciences. “Neurocrine discovered ORILISSA nearly twenty years ago and through our partnership with AbbVie, the approval of ORILISSA reflects our joint commitment to develop therapies for difficult to manage conditions in underserved patient populations.”
About ORILISSATM (elagolix)
ORILISSA is approved by the U.S. Food and Drug Administration (FDA) for the management of moderate to severe pain associated with endometriosis.1
ORILISSA is an orally-administered, nonpeptide small molecule gonadotropin-releasing hormone (GnRH) receptor antagonist that inhibits endogenous GnRH signaling by binding competitively to GnRH receptors in the pituitary gland. Administration results in dose-dependent suppression of luteinizing hormone (LH) and follicle-stimulating hormone (FSH), leading to decreased blood concentrations of ovarian sex hormones, estradiol and progesterone.1
Please click here for full Prescribing Information, including the Medication Guide.
ORILISSA is a prescription medicine used to treat moderate to severe pain associated with endometriosis. It is not known if ORILISSA is safe and effective in children under 18 years of age.
IMPORTANT SAFETY INFORMATION:
What is the most important information I should know about ORILISSA?
Take ORILISSA exactly as your healthcare provider tells you.
ORILISSA may cause serious side effects, including:
- Bone Loss (decreased Bone Mineral Density (BMD))
While you are taking ORILISSA, your estrogen levels will be low. This can lead to BMD loss. Your BMD may improve after stopping ORILISSA but may not recover completely. It is unknown if these bone changes could increase your risk for broken bones as you age. Your healthcare provider may order a DXA scan to check your BMD.
- Effects on Pregnancy
Do not take ORILISSA if you are trying to become or are pregnant as your risk for early pregnancy loss may increase. If you think you are pregnant, stop taking ORILISSA right away and call your healthcare provider. ORILISSA may change your menstrual periods (irregular bleeding or spotting, a decrease in menstrual bleeding, or no bleeding at all), making it hard to know if you are pregnant. Watch for other signs of pregnancy such as breast tenderness, weight gain and nausea. ORILISSA does not prevent pregnancy. You will need to use effective hormone-free birth control (such as condoms or spermicide) while taking ORILISSA and for one week after stopping ORILISSA. Birth control pills that contain estrogen may make ORILISSA less effective. It is unknown how well ORILISSA works while on progestin-only birth control.
Do not take ORILISSA if you:
- are or may be pregnant, have osteoporosis, have severe liver disease, or take medicines known as strong OATP1B1 inhibitors such as cyclosporine or gemfibrozil. If you are unsure if you are taking one of these medicines, ask your healthcare provider.
What should I tell my healthcare provider before taking ORILISSA?
Tell your healthcare provider of all your medical conditions, including if you:
- have or have had broken bones, have other conditions or take medicine that may cause bone problems, have or have had depression, mood problems or suicidal thoughts or behavior, have liver problems, think you may be pregnant, or are breastfeeding or plan to be. It is unknown if ORILISSA passes into breastmilk. Talk to your healthcare provider about the best way to feed your baby if you take ORILISSA.
Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.
Especially tell your healthcare provider if you take birth control pills. Your healthcare provider may advise you to change the pills you take or your method of birth control.
What are the possible side effects of ORILISSA?
ORILISSA can cause serious side effects including:
- suicidal thoughts, actions, or behavior, and worsening mood. Call your healthcare provider right away, or call 911 if an emergency, if you have any of these symptoms, especially if they are new, worse, or bother you: thoughts about suicide or dying, try to commit suicide, new or worse depression or anxiety, or other unusual changes in behavior or mood. You or your caregiver should pay attention to any changes, especially sudden changes in your mood, behaviors, thoughts, or feelings.
- abnormal liver tests. Call your healthcare provider right away if you have any of these signs and symptoms of liver problems: yellowing of the skin or the whites of the eyes (jaundice), dark amber-colored urine, feeling tired, nausea and vomiting, generalized swelling, right upper stomach area pain, bruising easily.
The most common side effects of ORILISSA include: hot flashes or night sweats, headache, nausea, difficulty sleeping, absence of periods, anxiety, joint pain, depression and mood changes.
These are not all the possible side effects of ORILISSA. This is the most important information to know about ORILISSA. For more information, talk to your healthcare provider.
Tell your healthcare provider if you have any side effect that bothers you or that does not go away. Call your healthcare provider for medical advice about side effects.
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.
If you cannot afford your medication, contact www.pparx.org for assistance.
Endometriosis occurs when tissue similar to that normally found in the uterus begins to grow outside of the uterus, leading to a range of symptoms, including painful periods, pelvic pain in between periods and pain with sex.4 These growths are called lesions and can occur on the ovaries, the fallopian tubes, or other areas near the uterus, such as the bowel or bladder.4,5 Estrogen fuels the growth of lesions.5
For more information on endometriosis, visit our press kit here.
AbbVie is a global, research and development-based biopharmaceutical company committed to developing innovative advanced therapies for some of the world’s most complex and critical conditions. The company’s mission is to use its expertise, dedicated people and unique approach to innovation to markedly improve treatments across four primary therapeutic areas: immunology, oncology, virology and neuroscience. In more than 75 countries, AbbVie employees are working every day to advance health solutions for people around the world. For more information about AbbVie, please visit us at www.abbvie.com. Follow @AbbVieUS on Twitter, Facebook or LinkedIn.
About Neurocrine Biosciences, Inc.
Neurocrine Biosciences, a San Diego based biopharmaceutical company, is focused on developing treatments for neurological and endocrine related disorders. The company discovered, developed and markets INGREZZA® (valbenazine), the first FDA approved product indicated for the treatment of adults with tardive dyskinesia, a movement disorder. Discovered and developed through Phase II clinical trials by Neurocrine, ORILISSA™ (elagolix), the first FDA-approved oral medication for the management of endometriosis with associated moderate to severe pain in over a decade, is marketed by AbbVie as part of a collaboration to develop and commercialize elagolix for women’s health. Neurocrine’s clinical development programs include opicapone as an adjunctive therapy to levodopa/DOPA decarboxylase inhibitors in Parkinson’s disease patients, elagolix for uterine fibroids with AbbVie, valbenazine for the treatment of Tourette syndrome, and NBI-74788 for the treatment of congenital adrenal hyperplasia (CAH). For more information and the latest updates from Neurocrine, please visit www.neurocrine.com.
Some statements in this news release are, or may be considered, forward-looking statements for purposes of the Private Securities Litigation Reform Act of 1995. The words “believe,” “expect,” “anticipate,” “project” and similar expressions, among others, generally identify forward-looking statements. AbbVie cautions that these forward-looking statements are subject to risks and uncertainties that may cause actual results to differ materially from those indicated in the forward-looking statements. Such risks and uncertainties include, but are not limited to, challenges to intellectual property, competition from other products, difficulties inherent in the research and development process, adverse litigation or government action, and changes to laws and regulations applicable to our industry. Additional information about the economic, competitive, governmental, technological and other factors that may affect AbbVie’s operations is set forth in Item 1A, “Risk Factors,” of AbbVie’s 2017 Annual Report on Form 10-K, which has been filed with the Securities and Exchange Commission. AbbVie undertakes no obligation to release publicly any revisions to forward-looking statements as a result of subsequent events or developments, except as required by law.
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Endometriosis is an often-painful condition that develops when tissue that looks and acts like the endometrium (the lining of the uterus) migrates outside the uterus. This tissue implants itself throughout the abdomen: on the outside of the uterus, the fallopian tubes and ovaries, the ligaments supporting the uterus, the area between the vagina and rectum, and the lining of the pelvic cavity. Although displaced, the tissue continues to act as if it were still in the uterus: every month, in response to hormonal signals, it thickens, breaks down and bleeds. With no route out of the body, the trapped blood causes inflammation and pain, scar tissue formation, and adhesions that can lead to bowel problems.
We don’t know what causes endometriosis. Since the disorder seems to run in families, it may have a genetic basis. One theory holds that it stems from a backflow of menstrual discharge through the fallopian tubes into the pelvic area. Whatever the cause, endometriosis can be a difficult problem to treat.
The latest approach is a drug called Orilissa (egalolix) approved in July (2018) by the U.S. Food and Drug Administration (FDA) for treatment of moderate to severe pain due to endometriosis. By the time you read this, the drug may be available in the U.S. FDA approval came after the agency reviewed two six-month long studies involving nearly 1,700 women with moderate to severe endometriosis. Results showed that a dose of 150 mg daily or 200 mg twice a day significantly reduced daily menstrual pelvic pain, nonmenstrual pelvic pain and pain associated with sex better than placebo.
While this is good news for women suffering from this difficult condition, there is a catch. Use of the 150 mg dose is recommended for up to two years and use of the 200 mg dose is limited to six months because the drug causes a decrease in bone mineral density, possibly increasing the risk of osteoporosis. Even for women following the recommendations, any bone loss that occurs while on the drug may not be reversible when they stop taking it. And because Orilissa works by reducing estrogen production, it can cause other adverse effects: hot flashes, night sweats, headache, nausea, difficulty sleeping, anxiety, joint pain, depression, and mood swings.
Another disadvantage: without insurance, the drug is expected to cost about $10,000 per year or $844.87 per month, although the manufacturer may offer it at lower cost to women who can’t otherwise afford it.
On the upside, this may be a useful alternative for many of the one in 10 women with endometriosis who haven’t been helped by other treatments. These include over-the-counter nonsteroidal anti-inflammatory drugs such as ibuprofen, oral contraceptives, and anti-gonadotropin drugs. (The latter block production of ovary-stimulating hormones; they can put a woman into artificial menopause with its own unpleasant symptoms.) The most drastic treatment option is surgery to remove the abnormal tissue (which may grow back) or hysterectomy, a procedure reserved for severe cases in women who do not wish to become pregnant.
Andrew Weil, M.D.
Hugh Taylor et al, “Treatment of Endometriosis-Associated Pain with Elagolix, an Oral GnRH Antagonist.” New England Journal of Medicine, July 6, 2017, DOI: 10.1056/NEJMoa1700089
Michael Rogers and Daniëlle Peterse (PHOTO: MICHAEL GODERRE/BOSTON CHILDREN’S HOSPITAL)
Endometriosis is a common gynecological condition that may affect more than 1 in 10 reproductive-age women. Yet, there’s very little research into the disease and limited options for treatment. A team in the Vascular Biology Program at Boston Children’s Hospital is trying to change that.
In endometriosis, tissue that normally grows inside the uterus grows outside of it, usually in other places in the abdominal cavity, like the ovaries and intestines. These growths can be asymptomatic, with women unaware they even have endometriosis, but they can also cause life-altering infertility and pain.
Endometrial lesions on the uterus, Fallopian tubes, and ovaries (ILLUSTRATION: ADOBE STOCK)
The current mainstays of treatment — surgery to remove lesions and hormonal medication — both come with their own flaws.
Surgery can restore fertility, but doesn’t always relieve pain, and most women will need repeat operations over time. Nonsteroidal anti-inflammatory drugs (NSAIDs), like aspirin and ibuprofen can help with pain relief, but don’t work for everyone. Hormonal medications, such as continuous birth control pills and GNRH agonists and antagonists, also don’t work for everyone and have side effects. GNRH agonist therapy can be “like putting a 17-year-old girl into menopause,” says Michael Rogers, PhD, who is leading the search for new treatments.
Replicating endometriosis pain
Rogers, along with his research fellows Daniëlle Peterse, PhD, and Victor Fattori, a PhD student, have developed a new mouse model of endometriosis that more accurately represents the human experience. The mice even show pain similarly to humans, rubbing their abdomens against the ground to relieve their discomfort much as we might rub an aching body part. “Our model is most similar to what women experience in terms of pain,” says Fattori.
The scientists are using their new model to test a series of drugs already used for other conditions to see if any might help with endometriosis pain. Through review of the scientific literature and consultation with other researchers, they’ve identified drug categories that endometriosis might plausibly respond to, including drugs that prevent angiogenesis (the creation of new blood vessels) and anti-inflammatory drugs. So far, tests have confirmed that the mice respond similarly to humans to existing medications, and have already found one promising new candidate drug. The team hopes to be able to follow up on this candidate and continue identifying new ones.
Seeking clues in DNA
In addition to trying to repurpose existing drugs, the team is also hunting through the DNA of endometriosis lesions for clues to creating new drugs. While other studies have identified mutations in lesions that burrow deep within the tissue, and in endometriomas, cysts on the ovaries, the Rogers lab is seeking mutations in superficial lesions, the most common type. Once the team identifies mutations, they can use the gene editing tool CRISPR to find possible drug targets for treating the diseased tissue.
The existing mutation already makes the cells of the lesions more vulnerable. With CRISPR, the team can introduce a second mutation to disable all the other proteins in the cell one by one. Their goal is to find a gene (and protein) that, if disabled, will incapacitate the already vulnerable, mutated cells, but will have no effect on more stable, normal cells.
“The initial mutation is like a broken right leg,” says Rogers, “and we’re going to try breaking all the bones to find which no longer allows the mutated cell to walk.”
Because this is such an understudied disease, we have a lot of opportunity to better understand it.
They could then make a drug that targets this protein. Ideally, that drug would reduce pain with minimal side effects.
There’s frequently a long gap between experiencing the first symptoms of endometriosis, which often appear in adolescence, and receiving a diagnosis. Even in the relatively wealthy, hospital-filled Boston area, the gap averages nine years. Women are often referred to gastroenterologists and even psychiatrists in the meantime.
Ultimately, identifying the mutations could not only help with medication development, but also potentially lead to a new diagnostic tool. Currently, receiving a diagnosis involves surgery so “many people won’t go in to get it diagnosed,” Peterse says. A simpler, less invasive diagnostic tool could shorten the time to diagnosis and allow more women to receive treatment.
Endometriosis research receives very little government funding – less than $10 million and falling – so donors are powerfully placed to have a major impact. There is also little preexisting research and few current research groups working on it. “Because this is such an understudied disease, we have a lot of opportunity to better understand it,” says Rogers.
Endometriosis is a common cause of painful periods, pelvic pain and infertility, affecting more than 11% of women in the US ages 15 to 44. Unfortunately, non-surgical treatments for endometriosis have been limited. In fact, the introduction of Orilissa in July marked the first time a new endometriosis drug has entered the market in nearly 10 years! Here’s what you should know about current treatment options.
What is endometriosis?
Endometriosis is a chronic disease defined by the presence of endometrial glands (glands that normally sit inside the walls of the uterus) at sites outside of the uterus, including the ovaries, fallopian tubes, vagina and bladder. They can even reach the lungs. This abnormal growth of uterine tissue can cause debilitating period pain and cramping as well as pelvic pain, back pain, painful intercourse and even painful bowel movements.
Endometrial glands are fed by estrogen, which is why medications used to treat endometriosis target estrogen and related hormones. Treatment of endometriosis can be lifelong.
What causes endometriosis?
Briefly, there is considerable controversy as to the exact cause of endometriosis, but here are some interesting leading theories:
- The implantation theory. This theory guesses that endometrial tissue from the inside lining of the uterus is shed during menstruation and sent through the fallopian tubes, allowing endometrial cells access to pelvic structures outside of the uterus.
- The immune system. The development of endometriosis may be related to the immune system’s inability to eliminate refluxed menstrual debris. The immune system may play a role in determining who will develop endometriosis, as well as the severity of the disease.
- Genetics. If you have a first-degree relative with endometriosis, your likelihood of developing it as well is 7%. Women with no family history of endometriosis have a 1% change of developing endometriosis.
How do I manage endometriosis with medications?
As there is no definitive cure for endometriosis yet, medications for endometriosis aim to help patients better manage its painful symptoms and slow down the growth uterine tissue outside of the uterus.
Mild to moderate pain
Ibuprofen (Motrin) and naproxen (Naprosyn) are the best-studied NSAIDs (nonsteroidal anti-inflammatory drugs) for endometriosis pain, so that’s where you’d start.
Another good option is oral contraceptives (birth control pills). Together with NSAIDs, they provide relief of symptoms for many women. No single oral contraceptive has been shown to be better than another. Most doctors recommend starting with a low-dose combination estrogen/progesterone pill.
Pro tip: If you’re trying for pregnancy, stick with a regular NSAID instead of a selective COX-2 inhibitor like celecoxib (Celebrex). Some studies show that selective COX-2 inhibitors can prevent or delay ovulation.
If you don’t experience relief from NSAIDs, your next option might be to try a GnRH (gonadotropin releasing hormone) agonist. These reduce the amount of estrogen made by the ovaries. Two effective regimens are Lupron (leuprolide), an intramuscular injection given every month or three months, and Synarel (nafarelin), a nasal spray taken twice daily.
While you are on a GnRH agonist, your doctor will add Aygestin (norethindrone acetate), a form of the hormone, progesterone, to minimize bone loss and other effects of low estrogen.
What is Orilissa and how does it work?
Just approved by the FDA in July, Orilissa is another option for moderate to severe pain due to endometriosis. Orilissa suppresses the release of GnRH, which reduces how much estrogen is released from the ovaries.
Unlike Lupron and Synarel, which take seven to 14 days to work, Orilissa is effective immediately. Orilissa comes as a tablet in doses of 150 mg taken once daily for up to 24 months, or 200 mg taken twice daily for up to six months.
Pro tip: Orilissa is currently being studied as a treatment for uterine fibroids where it appears to be effective at reducing heavy bleeding.
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Early research points to possible new endometriosis treatment
“Cancer drug offers hope of new endometriosis treatment for millions,” reports The Sun.
Endometriosis is a condition that can cause a great deal of distress and pain in women. It can also cause infertility. It happens when cells similar to those that make up the tissue lining the womb grow outside the womb, elsewhere in the pelvic region.
At the moment, treatment for endometriosis is not always effective.
Medicines include painkillers and hormonal treatments, but they’re usually unsuitable for women wanting to get pregnant.
Surgery works for some women, but in half of cases the problem returns within 5 years.
Researchers investigated the effect of a drug called dichloracetate, that has previously been tested against cancer (although it is not licensed as a cancer treatment).
In the laboratory, they tested the drug on cells from women with endometriosis, and on mice that had been given an endometriosis-like condition.
The results were positive. In both cases, the dichloracetate reduced the growth of new endometriosis cells.
However, these type of studies cannot tell us whether the treatment will work in women. The researchers say they are now recruiting women for a clinical study.
Find out more about endometriosis
Where did the story come from?
The researchers who carried out the study were from the University of Edinburgh. The study was funded by the Medical Research Council and the charity Wellbeing of Women.
It was published in the peer-reviewed medical journal Proceedings of the National Academy of Sciences on an open access basis, so it is free to read online.
The study was covered in the Mail Online and The Sun. Both media outlets gave a fairly balanced and accurate account of the study. However, the headlines suggest that a treatment is imminent, whereas these are very early studies and it is likely to be years before clinical trial results tell us whether dichloracetate could be a safe and effective new treatment for endometriosis.
What kind of research was this?
This was a laboratory study involving a combination of experimental studies conducted on cells obtained from women with endometriosis, and on laboratory mice.
While this type of early-stage research is important in the development of new treatments, it cannot tell us whether it will work as a treatment for women with endometriosis.
Many drugs that show potential in early animal and cellular research do not make it through all of the subsequent testing and trial stages, as they are found to be ineffective or associated with harms in humans.
What did the research involve?
The human cell samples were obtained from the lining of the abdominal cavity of women who had attended a pain clinic and had keyhole surgery to investigate the cause. Some women were diagnosed with endometriosis (the doctors could see visible signs of endometriosis during surgery), while others did not show signs of the condition.
Researchers studied the cell samples and found that those from women with endometriosis were breaking down glucose abnormally – they produced more of a waste product called lactate. The researchers think the excess lactate may encourage growth of endometriosis tissue.
They then treated the cells of women with endometriosis with either dichloracetate, water or dichloracetate plus a protein called transforming growth factor (which is thought to promote this abnormal glucose breakdown and the development of endometriosis).
They measured the cells’ lactate production and the growth of further endometrial tissue.
Finally, the researchers induced a condition similar to endometriosis in female mice. The mice were given either water or dichloracetate solution for 7 days. Researchers then measured the lactate levels and amounts of endometriosis tissue in the mice’s pelvic cavities.
What were the basic results?
Results from human endometrial cells:
- treating the cells from women with endometriosis with dichloracetate reduced their production of lactate, even when they were also exposed to transforming growth factor
- treating with dichloracetate also seemed to reduce the growth of further endometrial cells, possibly because of the reduction in lactate production
Results from mice:
- mice treated with dichloracetate had lower concentrations of lactate in the fluid of their abdominal cavity
- mice treated with dichloracetate had smaller endometriosis growths
How did the researchers interpret the results?
The researchers said: “These findings provide the rationale for targeting metabolic processes as a non-contraceptive treatment for women with endometriosis either as a primary non-hormonal treatment or to prevent recurrence after surgery.”
Endometriosis is difficult to treat. An effective option that does not involve hormone treatment or surgery would be very welcome.
While these results suggest that dichloracetate is worth researching further, it is far too early to know whether this could in the future become a safe and effective new treatment for endometriosis.
If you have symptoms of endometriosis, see a doctor. It can sometimes take many months to get diagnosed as other possible causes of pain have to be ruled out.
Although there is no cure for endometriosis, there are treatments available. These include:
- painkillers such as paracetamol and ibuprofen
- hormonal treatments such as the contraceptive pill
You may also find it helpful to contact a support group, such as Endometriosis UK, for information and advice.
Analysis by Bazian
Edited by NHS Website
Links to the headlines
Cancer drug offers hope of new endometriosis treatment for millions, docs say
The Sun, 3 December 2019
Controversial cancer drug may offer hope to millions of women battling endometriosis as scientists find it can reduce size of painful lesions
Mail Online, 3 December 2019
Endometriosis could be treated with cancer drug, study suggests
Medical Press, 3 December 2019
Links to the science
Horne AW, Ahmad SF, Carter R, et al
Repurposing dichloroacetate for the treatment of women with endometriosis
Proceedings of the National Academy of Sciences of the United States of America published online 2 December 2019
Women with endometriosis experience terrible pain. There’s finally a new treatment.
When actress and author Lena Dunham went public about having endometriosis, a disorder of the uterus, she wanted to make something clear: The pain it causes can be completely debilitating, and women desperately need better treatments.
Soon, it seems, women like Dunham with endometriosis pain will have a new option for relief. An endometriosis pain treatment was just approved by the Food and Drug Administration, and it’s expected to arrive at pharmacies as soon as August. The pill, called elagolix (brand name Orilissa), from the drugmaker AbbVie, is the first FDA-approved oral treatment in more than a decade for the moderate to severe pain that comes with endometriosis.
“This could really be transformative,” said Hugh Taylor, an OB-GYN at Yale Medical School who led the key trials testing the drug.
Endometriosis is one of the most common gynecological conditions, affecting as many as one in 10 women of reproductive age. And it can be incredibly painful. The reason is simple: Women with the condition are growing excess tissue in their abdomen that they can’t shed.
Every month, a woman’s uterine lining thickens and sheds during her period if she’s not pregnant. With endometriosis, that tissue thickens and bleeds, but it happens outside of the uterus — on the fallopian tubes, or even in the nose or lungs. Because the extra tissue has no way to exit the body (it can’t go through the vagina since it’s not growing in the uterus), it builds up and becomes trapped, leading to pain and, in some cases, infertility.
There’s no cure for endometriosis. To manage symptoms, women are usually prescribed birth control or over-the-counter painkillers as a first-line approach, but they don’t always work. In severe cases, a doctor may suggest “excision surgery” to remove the extra tissue. (Dunham had eight surgeries and ended up getting a hysterectomy, which was considered an extreme measure.)
Enter elagolix. Endometriosis is an estrogen-driven disease, and the drug works by lowering estrogen levels. Two large double-blind, placebo-control randomized trials, which 1,285 women completed, tested whether it can help women control endometriosis pain. The results, published last year in the New England Journal of Medicine, were impressive. The patients in those trials scored their pain from 0 (no pain) to 3 (severe pain). On average, they had pain levels of 2.2 out of 3 before starting on the drug — and they experienced a 2-point reduction in pain after taking the treatment for three months.
“It’s a major advance,” said Dr. Louis DePaolo, head of the fertility and infertility branch at the National Institute of Child Health and Human Development, “and another option women have that’s effective.”
Now the less good news: The drug won’t cure endometriosis; it’ll only tamp down the pain it causes. Many women in the trial experienced the symptoms of menopause — hot flashes, headache, insomnia — and researchers have also found the drug causes bone loss. We have no idea about the long-term effects of taking the drug because there are no trials lasting for longer than a year, or how it stacks up against other painkillers (since the trials only compared it to placebo). That’s not to mention cost: The drug’s price is listed at $850 per month. But for some, the risks and costs may be worth it. Here’s why.
Endometriosis is incredibly common — but it can go undiagnosed for years
Endometriosis is a chronic, sometimes highly disruptive condition. The three main ways it manifests are through pelvic pain, infertility, and pelvic masses such as cysts, scar tissue, and fibroids. According to the American College of Obstetricians and Gynecologists, some important signs of endometriosis include:
- Pain before and during periods
- Pain during sex
- Painful urination during periods
- Painful bowel movements during periods
But many women don’t know they have endometriosis. It’s sometimes mistaken or dismissed for regular period pain. Definitively diagnosing the disorder requires invasive surgery; doctors need to peer inside the pelvis through a laparoscopy. (Imaging is rarely helpful in getting a clear diagnosis.) This involves making a small incision in the belly and inserting a tube with a tiny camera to see if the pelvic organs show signs of tissue scarring and buildup. So it’s no surprise it takes between three and 11 years after the onset of symptoms to diagnose endometriosis.
Doctors aren’t sure why some women get it
Adding to the mystery around endometriosis: No one knows exactly what causes it, but doctors have some theories.
- Retrograde menstrual flow: During a period, when a woman is shedding her uterine lining, some of that tissue can flow through her fallopian tubes and into her pelvis, which researchers think may cause endometriosis. But doctors have also found that the rate of retrograde menstruation is about the same in women with and without endometriosis, so they think additional factors spur the disorder in some.
- Genes: The disorder runs in families, so doctors believe there’s a genetic component. If a woman’s mom or sister had endometriosis, the woman is believed to be at a higher risk.
- Somatic mutations: Researchers are also finding that somatic mutations — acquired changes to DNA that happen after a person is born — may also be an endometriosis driver.
- Immune system dysfunction: Problems with the immune system can hamper a woman’s ability to clear her menstrual debris, leading to endometriosis.
- Environmental factors: There’s some evidence to suggest environmental exposures to certain chemicals may contribute to one’s risk of developing endometriosis.
The treatments available don’t always help, and some have severe side effects
When birth control pills or over-the-counter painkillers fail to help endometriosis pain, women are often left choosing between a monthly injection called Lupron Depot, which can put women into a profoundly menopausal state, or Danazol, a male hormone that often causes acne and facial hair growth.
In women for whom these drugs aren’t effective, or who don’t want to take medications, surgery to remove the displaced endometrial tissue can be a highly effective option. But the trouble with surgery is that endometriosis can recur, so women may need more surgeries. The success of surgery also depends on finding a skilled and experienced surgeon, and there’s always the risk of surgical complications.
The new drug elagolix is not risk-free, either. In the trials, women who took the drug had greater bone loss than did those who received placebo, and this wasn’t entirely surprising. Like other endometriosis treatments, the drug works by lowering estrogen levels (since endometriosis needs estrogen to grow). When that happens, women experience menopausal side effects. The most common in the trials were hot flashes, headaches, and insomnia. (Elagolix is available in two doses — 150 mg per day, or 200 mg twice daily — and the women on the higher dose experienced the side effects more frequently.) Mood swings and night sweats were less common, and one woman in the trial died by suicide (though there’s no indication that the medicine was a cause of her death).
DePaolo pointed out, “ doesn’t have the pronounced side effects some of the other compounds have.” That’s because, he said, it doesn’t drive down estrogen levels as severely.
But for patients who have tried other estrogen-lowering medicines, elagolix isn’t all that appealing. “This drug is palliative in nature. It does not cure or shrink the disease,” Casey Berna, director of programs and partnerships for the advocacy group EndoWhat. The drug’s side effects also concerned her, as did the lack of knowledge about its long-term impact.
For other women, though, the trade offs may be worth it. But in either case, women with severe endometriosis are still left choosing between terrible pain, surgery, or drugs with serious side effects.
Treatments for Endometriosis
Although there is no cure for endometriosis, a variety of treatment options exist.
Endometriosis treatment goals may include:
- relieving/reducing pain symptoms
- shrinking or slowing endometrial growths
- preserving or restoring fertility
- preventing/delaying recurrence of the disease
To learn more about endometriosis treatments and pain read chapter two in The Endometriosis Sourcebook.
Here are the current most common endometriosis treatments and coping methods available today:
PAIN MEDICATION: Over-the-counter pain relievers may include aspirin and acetaminophen, as well prostaglandin inhibitors such as ibuprofen, naproxen sodium, indomethacin, and tolfenamic acid. In some cases, prescription drugs may be required.
PAIN RELIEF: ProSirona, a new product that targets endometriosis and fibromyalgia pain, is applied topically on the area of pain. The main ingredients in ProSirona are essential oils which have been combined in a technologically advanced way to make them optimally effective. (ProSirona can be used for other types of pain as well.) It is an alternative to oral pain-relief drugs.
HORMONAL THERAPY: Hormonal treatment aims to stop ovulation for as long as possible and may include: oral contraceptives, progesterone drugs, a testosterone derivative (danazol), and GnRH agonists (gonadotropin-releasing hormone drugs). Side effects may be a problem for some women.
SURGERY: Conservative surgery seeks to remove or destroy the growths, relieve pain, and may allow pregnancy to occur in some cases. Conservative surgery can involve laparoscopy (outpatient surgery in which the surgeon can view the inside of the abdomen through a tiny lighted tube that is inserted through one or more tiny abdominal incisions; also referred to as “belly-button” surgery or laparotomy (more extensive procedure, full incision, longer recovery period). Hormonal therapy may be prescribed along with conservative surgery. Radical surgery, which may be necessary in severe cases, involves a hysterectomy, removal of all growths, and removal of ovaries.
ALTERNATIVE TREATMENT: Complementary endometriosis treatment options may include traditional Chinese medicine, nutritional approaches, homeopathy, allergy management, and immune therapy.
To learn more about alternative therapies, see The Endometriosis Sourcebook, Overcoming Endometriosis, and Endometriosis: The Complete Reference for Taking Charge of Your Health. Many members have found that endo-specific nutrition and vitamins, minerals, and other supplements have helped them achieve better health. You can find some of these helpful books on coping with and treating endometriosis in our store. Or, learn more about nutrition for endometriosis by clicking the button below.
Invest in your health and in the health of your loved ones by becoming a member today!
When Endometriosis Caused Me to Face My Body Image Demons
I admit that I have never had a true healthy relationship with neither food nor my body image. While I will be the first person to support someone else’s journey to body acceptance, point out a negative comment about weight/appearance or push someone else to love themselves as they are, I am the last to practice what I preach. Talk about hypocritical, right? I know this about myself and I won’t lie about it but let me shed some light on how my own struggle with body image along with my chronic illness has made accepting my body a true journey.
I was a chubby kid. I grew up in a complicated household so no one truly monitored what I ate, myself included. The “baby fat” that was easier to brush off in my younger years became a health issue when I started to become an adolescent. I started to get that “look” from nurses and doctors every time I stepped on the scale and the number got higher and higher. It didn’t help that my primary care doctor’s nurse was a real peach… a very slim peach that liked to point out weight loss isn’t very difficult (insert eye roll).
So, at the ripe age of 13 I decided “screw this,” and began to change my diet and started exercising at least three to four times a week. I discovered I loved yoga and was good to go. After losing some weight, the nurse at my doctor’s office stopped giving me that “look.” Unfortunately, that wasn’t enough for me. I kept thinking about how great it would be to lose more and more weight… how awesome I’d look at this weight or that weight. I was obsessed.
Enter stage left, endometriosis. I was diagnosed at the age of 22 after continuous issues with my periods, bladder pain and ongoing pelvic pain that persisted outside of my cycle. After my diagnostic laparoscopy, I was put on the birth control shot. I’m ashamed to admit I was more concerned about the weight gain than if it would actually help relieve my pain. The numerous birth control pills I had been on in the past never really affected me as far as weight, so this was new territory. I only gained maybe a few pounds, but it felt to me like I was blowing up like a blowfish. Luckily though, it helped with my pain for around two years – until it didn’t.
The beginning of 2016 started with another laparoscopy surgery and continued with treatment, after treatment, after treatment. In that July I was put on leuprolide which puts a woman’s body into medical menopause. While I was told it doesn’t cause weight gain… it did for me. My body changed and I gained weight until I couldn’t do the treatment anymore. I had another surgery mid-2017 and continued to gain weight thereafter due to recovery and trying another round of the birth control shot.
A couple months into 2018, I had gained every pound back that I lost. Exercise was too painful and I had some days where moving was pretty much impossible. I quickly was falling into a downward spiral of self-hatred. No matter what I ate I kept gaining weight due to the hormone fluctuations and it just made me angrier. My body was my own enemy. So, then I said “f*ck it,” and didn’t care what I did, ate or what happened. Now with endometriosis, diet can affect your symptoms, and it does mine, so I was only making things worse.
Fast forward to now. I ended up going to my primary care doctor – not the one I mentioned before FYI – and actually reached out for some help. I knew how to “diet” but talking to a nutritionist helped show me how to eat healthier and actually eat. So, now I’m eating right to (hopefully) get me where I need to be weight-wise. I also plan on seeing a counselor regarding my ongoing negative self-image since it has always been an issue for me.
Focusing on my weight with this disease has brought out old demons. As I write this I am emotional and just yesterday I was so frustrated because the scale had fluctuated a few pounds. I am older and so the weight isn’t going to come off as easy as it used to and my expectations are always unhealthy and abnormally high. I question myself every day, wondering if I’m doing enough, eating well enough and crunching calories over pretty much everything I eat. I realize I have to take a step back and not basically punish myself for gaining weight. Endometriosis took away what I considered a huge victory for me by causing me to gain the weight I originally lost, but in the end, it has made me face the reality of my broken relationship with my body. We all know loving ourselves – not just our bodies, but as a whole – is not just something you deicide one day and then magically do. It takes practice, patience and a willingness to accept not just our imperfections but the obstacles in our journey to acceptance.
Considering surgery for endometriosis? Here’s what you need to know
Women with endometriosis need evidence-based information to make informed choices about their treatment. Credit: Timothy Paul Smith
Between 1% and 10% of Australian women have endometriosis, a condition where the tissue that normally lines the uterus, the endometrium, grows outside the womb.
Since endometriosis was first identified in the second half of the 19th century, doctors have been treating it surgically. This initially involved an open cut in the woman’s abdomen and removing the endometriosis using a scalpel.
With progress in the last 100 years, most surgery for endometriosis is done with laparoscopy (key-hole surgery) and uses diathermy (electric current) or laser to either vaporise or cut out endometriosis.
The level of experience of the operating gynaecologist at finding and recognising endometriosis is likely to have a direct impact on how much is identified and treated.
Endometriosis is considered a benign disease: it doesn’t kill. It varies from causing no symptoms, to causing debilitating pain and infertility.
The surgical approach to endometriosis reflects this variability. For a woman with no symptoms, it’s often reasonable to not have any treatment. But for a woman with debilitating pain, surgery can be life-changing.
Endometriosis can grow on important organs such as the bowel and bladder. Surgical removal of the disease on these organs comes with extra risks of complications, so should only be performed when symptoms are severe.
When symptoms aren’t severe, the surgeon may leave residual endometriosis in the wall of the bowel or bladder.
If, however, a woman has severe symptoms such as pain when opening her bowels, she may opt for more aggressive surgery, such as the removal of the piece of bowel invaded by endometriosis and having all the disease cleared.
These days, incisions for endometriosis surgery are small. Credit: Medical Art Inc/
After surgery to remove all visible endometriosis, the likelihood of the disease recurring is estimated as 21.5% at two years and 40-50% at five years. Of this, around one-third of cases will occur because some endometriosis has been missed at the original surgery. The other two-thirds will be due to new disease (recurrence).
The key-hole surgery to treat all endometriosis varies from being simple and lasting 20 minutes, through to complex work taking four to five hours and requiring a gynaecologist with advanced training.
Such surgery comes with risks. Rarely, an important organ such as the bowel or bladder can be damaged and need to be repaired. Infections involving the cuts, the bladder or the womb can also occur. Occasionally, women will initially be unable to pass urine and will need a catheter.
Unfortunately for some women, the surgery won’t alleviate their symptoms. The surgery may go very well, but at least 20% of women will return after surgery with the same levels of pain. Surgeons will discuss this possibility with patients before surgery.
Most endometriosis is thought to occur because of retrograde menstruation, where menstrual blood and cells of the endometrium go backwards through the fallopian tubes and stick in the pelvis.
It therefore makes sense to stop this happening to prevent new endometriosis. This can be done in two ways.
The first is to use hormones (the combined contraceptive pill, high dose progesterone-like drugs, or menopause-inducing drugs) to stop periods. This delays recurrence (new disease) but may come with hormonal side effects, such as moodiness, bloating, weight gain, loss of libido, hair loss, pimples, hot flushes, night sweats and headaches.
The second approach is to surgically prevent retrograde menstruation by either blocking the fallopian tubes (tubal clips), destroying the endometrium (endometrial ablation) or removing the uterus (hysterectomy).
These procedures in theory should be effective but have not been proven with research. They are only an option if women don’t want to have children or have finished having children. They also carry some risks, such as infections, damage to important organs such as the bowel, bladder or large blood vessels, and the development of scar tissue in the pelvis.
As with all health-care decisions, a woman’s choice of treatment for endometriosis will be based on her assessment of the risks and benefits. She will have her own experiences and knowledge, and these may have a greater impact than her doctor’s recommendation. Access to balanced, evidence-based information is therefore essential for women to make an informed decision.
Based on the evidence, women with minor symptoms may choose not to have active treatment but, rather, to watch and wait. For women with debilitating symptoms, the choice is more difficult, as we don’t currently have good evidence-based research to justify promoting surgery over hormonal treatment, or vice versa.
I have painful periods, could it be endometriosis? Provided by The Conversation
This article is republished from The Conversation under a Creative Commons license. Read the original article.
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I Thought I Was Gaining Weight, Then Doctors Found a 20-Pound Cyst on My Ovaries
A version of this story originally appeared on VICE Indonesia.
The first “expert” to figure out that something wrong with me—to notice that I was actually ill and in desperate need of emergency surgery—was my aesthetician. That’s right, the same woman who would complain about her boyfriend as she ripped the hair off my body faster than I could scream “Leave him!” was the first to figure it all out.
“Girl, are you pregnant?” she said as she waited for the wax on my thigh to dry.
I immediately shot her a nasty look of disbelief. How dare she? I looked down and placed my hand on my, honestly, larger-than-usual stomach with a sense of embarrassment and shame. I mean, yeah, it was weirdly larger than it was only a few weeks ago. And, of course, the thought had crossed my mind—was I really pregnant?
“OK, well, I stopped coming here as often and, maybe, I’ve gained a few pounds since we last saw each other,” I stammered as a reply.
“No, no, no,” she said before grabbing her own love handles. “This is fat. What you have is not what I have.”
She dropped the conversation and I left the salon scared and trembling. I walked around the corner to an ice cream bar—I was living in Seattle at the time—where I hoped to catch a friend, Milo, on his shift. I explained what just happened as he made a fresh batch of waffle cones. “Honestly?” Milo said. “Fuck that rude-ass bitch.”
We laughed. And then I called Planned Parenthood to ask about a pregnancy test. The older woman on the line was calm and professional when she explained that, without insurance, the test would cost ten times what I thought it would: $200! I nearly choked on my salted caramel ice cream. “But it was $20 when I went two years ago!” I exclaimed.
Well, the woman explained, this pregnancy test was going to be a lot more comprehensive. It wasn’t as simple as just peeing in a cup. So before she scheduled the appointment, she wanted to know why I was so worried. Was I being “unsafe?”
“Well, no,” I said. “But I do feel bad about my stomach.”
She seemed annoyed. To be fair, weight gain isn’t the most telling sign of a pregnancy. She told me to just go to Walgreens for a standard home pregnancy test and then hung up.
Nearly two years after that anxiety-inducing salon trip, my stomach has remained the most-puzzling part of my entire body. I never ended up going to Walgreens for that pregnancy test, instead choosing to brush the entire conversation off as a simple case of weight gain.
When I moved back to Jakarta more than a year ago, I began exercising heavily, way more than I ever did while living in the United States. I also started eating healthy and even tried to mimic one of our editors’ vegetarian lifestyle, ordering lunches from the same places he did, even though it definitely hurt my wallet a bit. Whatever, I thought as I stared at my shrinking bank account, the stomach must go—whatever the cost.
All these healthy habits worked. Just not where I wanted them to. My arms became toned from all those barbell workouts. For the first time in my life, I could see my cheekbones. The numbers on the scale went down as well. But my waist? Stubbornly, it wouldn’t budge. Still, they say that the stomach is the last fast to go, so I sucked it up, and continued packing a second outfit for the gym each day.
Throughout all of this, the pregnancy comments kept coming. Women everywhere took notice of my belly bulge and figured it was safe to make a comment. I was congratulated about what everyone thought was a child growing in my belly while I got my nails done. While I had my body hair waxed. While I had my head shampooed. It even happened one time at a music festival, which is probably the weirdest place to be congratulated for your totally-not-real pregnancy.
I learned to just brush it off. Sure, it looked like I had swallowed a basketball, but it wasn’t a baby. It was just some really stubborn fat, and, for a while, I felt comfortable just telling people, “Ah, I’m just heavier than usual right now.” Until one day, two months ago, I wasn’t.
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I finally went to the hospital. My mother insisted that she should come along, telling me that I would surely need her. As we waited to see the gastroenterologist—the stomach doctor—I was sure that there was something wrong with my belly. I had started to suffer from pretty regular gastric issues, and here in Jakarta, where the food and the water can make you sick if you’re not careful, the gastroenterologist is a pretty popular doctor.
We needed to arrive hours before he did in order to secure our space in the waiting room. An hour had passed before I was finally called in. The doctor was pretty annoying. He wouldn’t look me in the eye and instead spoke directly to my mother. When I took off my cardigan so he could check my abdomen, he decided to go on a long rant about how my tattoos were potentially the cause of a viral infection (they weren’t).
But then, when I lifted my shirt just enough so he could see my stomach, the mood in the room changed. The doctor, suddenly no longer concerned about his lecture on tattoos and viral infections, told me that I would need to undergo a lot of tests. His face looked pretty serious, which did little to calm my already-rattled nerves.
The only thing I really remember about the surgery was how cold the room was. Well, that and the blue hallways of the surgery wing. The last time I saw that particular shade of blue was in 2004, when I willingly went on minor hajj (umrah) with my family to Mecca, but only after my father promised a quick detour to Egypt before we returned home. All I really remember from that trip was the spiced rice and bland, flavorless fish, and the blue of the Mediterranean Sea off the coast of Alexandria. I remember marveling at that cobalt blue as the man towing my banana boat drove farther from the shore, eventually flipping the thing over and sending me into the cold, choppy water. I cried then, as if all those swimming lessons and that life jacket somehow couldn’t stop me from drowning in the sea.
I stared at that same shade of blue and cried, alone, in the surgery wing. The nurses wouldn’t let her come with me, but my mother told me there would be other patients back there to keep me company. She was wrong. I was totally alone and really, really scared. I thought back, to that trip to Alexandria and how I had kept myself afloat out there on the sea. I was small then. I can deal with this too, I told myself.
The doctors and nurses came in one by one, all of them gossiping around me as they worked. The anesthesiologist soon arrived and he too took notice of my tattoos. He needed to know if I used “relaxers,” or downers, while partying. He said he needed to know to judge my tolerance levels. “It’s OK if you do drugs. I just need to know and, I mean, you do have tattoos.”
My eyes felt heavy and I blacked out. A short while later I woke up mid-surgery. I couldn’t feel anything below my sternum and the moment I finally gathered up enough strength to speak was the exact moment they were ready to pull the cyst from my abdomen. The lead surgeon looked at me and asked, “do you want to see it?” The nurse then handed me his phone.
It was the ugliest thing I’ve ever seen. It was like a monstrous sack of flesh, something straight out of a Cronenberg movie. The doctor said there was liquid inside the sack, something like 9 liters worth, or almost 20 pounds. The sack itself was this disgusting, veiny, semi-translucent pink thing that looked sort of like a hairless cat’s skin. It was alien-like and totally something I wanted out of my body. For a second I worried that it had a heartbeat. I felt like I was about to cry. Should I be checking it out? Looking for its 10 fingers and 10 toes?
All of that was running through my head but my mouth was still heavily sedated, so instead of saying all of that, I just said, “Oh. Gross.” So that’s what was making my stomach look so big? Suddenly, all those weightlifting and cardio workouts felt like a waste. You can’t sweat away a 20-pound sack of veiny, liquid-filled hell, can you?
The next couple of days were a blur as my mom’s friends took turns entertaining my mother and telling me about their own reproductive woes. At the time, those stories made me feel depressed. It felt really unfair that, at 22, I was going through the kinds of medical issues of women in their 50s.
It was even worse that I had to share a room with a woman who was pregnant, and in her third trimester. Most of the women on my floor, including my nameless roommate I only spoke to when I needed the air conditioning turned off or on, had to endure terrible pain as well. But they left with a baby, a child who would grow and love them and be with them forever. I was leaving with a scar and some photos of a nauseating lump of flesh.
But mine, too, will be with me forever. The doctors might have cut this giant sack of skin and pus from my body, but it was only the first of probably many little gifts from my new friend endometriosis—a mysterious medical oddity I was diagnosed with that will stick with me for the rest of my life. Endometriosis is a condition where tissue similar to the lining of the uterus grows in other places in the body, usually in the pelvic cavity; it affects at least 10 percent of women. The nodules or lesions that form can sometimes grow into cysts on the ovaries. My doctor said the endometriosis caused the cyst and there’s a good chance I’ll develop more.
My jealousy of new mothers eventually waned, and while I’m still pretty weak—too weak to exercise—I am getting a lot of enjoyment out of eating. No longer does my stomach push against a fluid filled cyst in my abdomen after I eat too much. The next six months will be busy with hormone therapy to help prevent more cysts that will affect my mood, my weight, and my skin in ways I could never predict.
Eventually I stopped feeling ill. I don’t feel bad about my stomach anymore. But that may change, and when it does, I will hopefully remember to listen to my body—and all those women in the salon—a lot closer than before.
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