“Endometriosis knows no gender. Everyone in the endo community deserves to feel respected, heard and welcomed just as they are. We see you and are here for you.” Find endoQueer on Instagram, Facebook, Twitter and their website.

I am a one-person show at LivingWithEndometriosis, and I agree with and embrace what endoQueer has to say. I am also queer, pan, demi and gender-fluid. <3

Fact or Myth? “Hormone therapy cures endometriosis.”

MYTH!

endometriosis.org writes:
“Synthetic hormonal drugs like the pill, Provera, Danazol and Zoladex have been used for many years to ‘treat’ endometriosis. However, these hormonal treatments do not have any long-term effect on the disease itself. They do temporarily suppress (quieten) the symptoms, but only while the drugs are being taken. Once use of the drugs ceases, symptoms more often than not return.

This means that hormonal treatments do not have a role in treating (eradicating) endometriosis. If eradication of the disease is desired, surgery performed by a gynaecologist with extensive knowledge and experience of the specialised techniques used for endometriosis is the only effective medical treatment.”

The Center For Endometriosis Care (CEC) writes:

“There is NO evidence that women treated with these agents have their endometriosis cured. On the contrary, there is ample evidence that most women have a prompt return of symptoms after they discontinue the drug. Menopause is a clinical situation which can be quite similar to the state induced by Lupron or Synarel treatment. When you consider that women who still have implants of endometriosis in their pelvis after menopause are very likely to have problems when postmenopausal hormone therapy is begun, it is hard to understand why anyone would reasonably expect a long-term cure from creating a state of extreme hypoestrogenism (lack of estrogen). In truth, if the implants are present, they can respond to stimulation. There has never been a medication that will cure the disease.” [See also Dr. Albee on suppressive medications and Dr. Albee on suppressing endo with birth control pills].

ICER (Institute for Clinical and Economic Review)‘s 2018 report on Elagolix: they “voted unanimously that the evidence was not adequate to distinguish the net health benefit of elagolix from that of treatment with either a GnRH agonist (leuprorelin acetate) or a hormonal contraceptive (depot medroxyprogesterone), due to limited and mixed evidence on clinical effectiveness and potential risks.

“They also noted the uncertainty around the therapy’s long-term side effects and clinical benefit, as elagolix use was limited to 6-12 months in clinical trials yet is intended to treat a chronic and disabling condition.

“While elagolix appears to offer short-term clinical benefits in terms of reduced pain and improved quality of life for women living with endometriosis, evidence is not yet sufficient to rule out the possibility that this therapy may pose long-term safety risks for patients,” noted Dan Ollendorf, PhD, ICER’s Chief Scientific Officer.”

You can find this and other myths here.

During today’s segment of the Worldwide Endometriosis March, Katie Luciani of The Endometriosis Network Canada echoed my sentiments back on March 2, 2021 about gendered language, only they’ve been saying it for almost a year now! <3

Happening Now! The virtual Worldwide Endometriosis March!

DAY 2 – PART 1:

DAY 2 – PART 2:

Happening Now! The virtual Worldwide Endometriosis March!

DAY 1 – PART 1:

DAY 1 – PART 2:

For transgender men, pain of menstruation is more than just physical

Safety concerns and a lack of access to menstruation products are among the issues trans and gender-nonconforming people face during “that time of the month.”

Jan. 11, 2020, 8:38 AM PSTBy Chloe Atkins

When transgender model and activist Kenny Ethan Jones experienced his first period, he faced both physical and psychological pain. Initially, Jones, who had not yet come out as trans at the time, felt like he was losing control and didn’t understand what was happening to his body. However, one thing was clear: He didn’t feel like himself.

“I didn’t believe that having periods would be a part of my lived experience,” Jones told NBC News. “I felt isolated; everything about periods was tailored to girls, yet me, a boy, was experiencing this and nothing in the world documented that.”

He currently experiences a wide range of challenges with his monthly bleeding, especially when it comes to getting his hands on menstrual hygiene products.

“Having a period already causes me a lot of [gender] dysphoria, but this dysphoria becomes heightened when I have to shop for a product that is labeled as ‘women’s health’ and in most cases, is pretty and pink,” Jones explained.

Some transgender and gender-nonconforming people who menstruate, like Jones, say when the products are categorized as women’s products, they can feel alienated — and may even avoid purchasing them altogether.

“I’ve definitely seen a positive shift with the discussion around women experiencing periods, but the stigma towards trans men, nonbinary and intersex individuals having them is still alive and well,” said Jones, who gained attention in 2018 when he was the face of a U.K.-based menstruation company’s ad campaign. “People are still reluctant to the idea that it’s not only women that experience periods.”

Jennifer Weiss-Wolf, founder of Period Equity, which advocates for affordable and accessible menstruation products, said, “Anyone who menstruates needs to be part of the discussion and decision-making about their own health and well-being.”

The hurdles some trans men and gender-nonconforming people who menstruate say they face include the high cost of period supplies, lack of access to the products, safety concerns and inadequate medical care. Some of these challenges were recently brought to light when a story about menstruation product maker Always removing the female sign from its sanitary products went viral in October.

Economic vulnerability
A box of 36 tampons, which could easily be used within one menstruation period, could cost as much as $12 — that’s significantly more than the federal minimum wage of $7.25 per hour. Additionally, menstrual hygiene products sold in the U.S. are still subject to sales tax in 32 states.

A survey published last year in the journal Obstetrics and Gynecology found that nearly 64 percent of low-income women in St. Louis, Missouri, could not afford menstrual products — and nearly half of the women who participated in the survey were unable to afford both food and period products.

The cost and taxation of menstruation products could hit transgender people even harder, according to Rodrigo Heng-Lehtinen, deputy executive director of the National Center for Transgender Equality.

Trans individuals, according to Heng-Lehtinen, “are experiencing poverty, unemployment and underemployment at higher rates, so there is absolutely economic vulnerability here.”

His organization’s 2015 U.S. Transgender Survey found trans individuals are more than twice as likely to live in poverty and three times as likely to be unemployed as the general population.

Lack of access
Not only are transgender individuals impacted by the cost of menstrual products, but they also may not have access to them when they are free. While they are sometimes available without cost in women’s restrooms, Gabriel Arkles, senior staff attorney at the ACLU’s LGBT & HIV Project, said that those who menstruate who feel more comfortable using male restrooms will almost never have access to free tampons and pads.

Some schools like New York University have taken steps to distribute free menstrual hygiene products across campus, specifically in women’s and gender-neutral restrooms and offices. While advocates applaud those prioritizing menstrual inclusivity, they argue these products should be in all restrooms.

“This is a health care product, so it should be widely available. I think everyone in society is better off if they are more available for cheaper prices or for free in more places,” Heng-Lehtinen said.

Homeless transgender men face similar barriers when accessing tampons and pads at shelters. Women’s shelters, if they can, will offer the products, while men’s shelters will likely have little to no options for those who menstruate, according to Arkles.

Safety concerns
Even if cost is a nonissue, using a men’s restroom can be daunting for those who have their period. The sound of opening a tampon or pad, or simply carrying one, can lead to unwanted attention.

“You might have this monthly terror where you’re concerned that if you go to the restroom, and someone sees a tampon, then they’re going to start asking questions,” Heng-Lehtinen said.

The 2015 U.S. Transgender Survey, the largest survey of trans people in the U.S., found that nearly 60 percent of transgender respondents reported being too afraid to use public restrooms due to fear of a confrontation. Twelve percent reported being verbally harassed while accessing a bathroom in the past year.

“Men’s restrooms typically don’t even have places to throw away menstrual products within a stall. We have to discard them in a trash can in the common area of the restroom or even outside of the restroom,” Arkles said. “That’s inconvenient at best — at worst, it outs us and exposes us to possible discrimination and violence.”

Violence is a very real concern for transgender and gender-nonconforming Americans. The U.S. Transgender Survey found that nearly 1 in 10 trans respondents reported being physically attacked due to their gender identity in the year prior to the survey, and nearly half reported being sexually assaulted at some point in their lifetime. The FBI’s latest hate crimes report found a 34 percent increase in anti-trans violence reports between 2017 and 2018.

Inadequate care
Discrimination and stigma when seeking menstrual and reproductive care — ranging from treatment for an irregular menstrual cycle, to pap smears and cervical cancer screenings — are further obstacles for transgender people who menstruate.

The U.S.Transgender Survey reported that 1 in 3 respondents had at least one negative experience with a heath care provider — ranging from verbal harassment, to refusal of treatment and even teaching the provider about transgender individuals in order to receive the right care.

Dr. Juno Obedin-Maliver, an assistant professor at the Stanford University School of Medicine and the co-director of The PRIDE Study, said the general lack of knowledge about how to support transgender, nonbinary and intersex individuals, along with stigma and discrimination, contribute to these negative health care experiences.

“Good treatment starts with respect and knowing who the patients are and dropping assumptions,” Obedin-Maliver said.

Dr. Meera Shah, chief medical officer at Planned Parenthood Hudson Peconic, said health care providers’ lack of knowledge about LGBTQ health issues “can cause patients to feel incredibly uncomfortable and may even cause them to not return to care at all.”

Historically, medical knowledge has been gender-based and does not reflect gender diversity, according to Obedin-Maliver. As a result, there can be a misconception around what menstruation is for anyone who is not a cisgender woman.

“We need to broaden the discussion around sexual and reproductive health, and move away from it being solely a gender conversation about women and think about people of all genders,” Obedin-Maliver explained.

Shah said that if medical professionals don’t adopt gender inclusivity into their medical practice, patients will likely be addressed with incorrect pronouns, asked irrelevant questions or experience delayed medical care.

In May, reports surfaced about a pregnant transgender male who sought help at an emergency room for severe abdominal pain. The patient told a nurse he was transgender and his at-home pregnancy test was positive, but staff reportedly didn’t consider it urgent. By the time they began treatment, he gave birth to a stillborn.

Shah and Obedin-Maliver said many of their patients have experienced inadequate medical encounters. But while there’s much room for improvement, more and more health care providers are becoming educated about the issues unique to transgender and gender-nonconforming patients. And there are resources for those looking to find affirming and knowledgeable health care providers, like the provider directories available from the Health Professionals Advancing LGBTQ Equality and the Campaign for Southern Equality.

As for Kenny Ethan Jones, he said he has no plans to stop advocating for more transgender-inclusive health care.

“I’ll be spending my 2020 championing for further inclusion of my community,” he said.

Research Study – Information Found On The Internet About Endometriosis

Found via Antonia Boyton and the Endometriosis Association of Ireland

This Study is Open Worldwide

As part of Kathleen King’s (Chair Endometriosis Association of Ireland) MSc study you are invited to take part in research into information found on the internet about #endometriosis. This is an online questionnaire that will take 20 minutes to complete.

The link to the study is https://goo.gl/forms/MEZ2P6oM8Q5WVqCr2

This professor suffers from a mystery disease, so she developed an app to track its effects

Endometriosis gets very little U.S. federal funding for research, so Professor Noemie Elhadad developed the Phendo app to help women worldwide.
BY COURTNEY BIGGS
3/1/2019

An estimated 200 million women suffer from endometriosis worldwide. It’s a disease as common as diabetes, but it baffles the medical community. Doctors don’t know what causes it, or why it causes excruciating pain for some women and is asymptomatic in others.

Yet federal funding for researchers is scarce. In 2018, endometriosis received only $7 million of the National Institutes of Health’s $37.3 billion budget, less than a dollar per woman who suffers in the U.S. In 2019, that number is estimated to drop to $6 million. For context, anthrax research received $53 million in funding in 2018.

Noemie Elhadad, PhD, an associate professor of Biomedical Informatics at Columbia University, specializes in using computer science to draw insights from unconventional data sets such as doctors’ notes scribbled in patient files and patient comments in online forums. She cares about using “the power of the crowds” to leverage large data sets while including the patient’s voice. She’s also an endometriosis patient, and like many others, she has found that her symptoms don’t align with what is currently represented in endometriosis research or even recognized by some medical professionals.

“For the longest time, I had pain in my legs and I always thought, ‘Oh it’s because I’m lazy, I don’t exercise enough.’ I’m a pretty health-literate person, but I never put two and two together and understood that this was in fact very periodic pain, and it was related to my endometriosis,” says Elhadad. “There is a disconnect between what doctors recognize as endometriosis symptoms, and what patients are actually experiencing day-to-day. Bridging this gap is critical to further research on endometriosis.”

This experience, coupled with frustration at the slow progress toward a cure, was the catalyst for Elhadad to launch her own research project, Citizen Endo, in 2016 at Columbia University.

Elhadad knew that with the limited research funding available, she would have to be innovative about how she collected data. She also knew that many endometriosis patients were already tracking their symptoms in menstrual health apps such as Clue, leaving a critical data source untapped by researchers or doctors. So with a $50,000 grant from the Endometriosis Foundation of America (EFA), Elhadad developed the Phendo app, available on both iOS and Android devices.

Once patients consent to the research study via the app, they can document medical history, symptoms, medications, supplements, energy levels, diet, treatments, moods, and pain levels on a daily basis.

As of January 2019, the Phendo app has over 6,000 participants in over 65 countries, making it the largest collection of clinical data about endometriosis in existence.

This rich data set will allow the Citizen Endo team to begin phenotyping endometriosis. A phenotype is a set of observable characteristics. While researchers have already found that there is more than one phenotype of endometriosis by looking at histological samples from surgically excised endometriosis lesions (pathology), they don’t know how many different phenotypes there are in the disease.

“Identifying these phenotypic subgroups will help us answer questions like why some women respond well to some treatments, why some are infertile, and why some see no relief in their symptoms after menopause,” Elhadad said.

While there is an element of unreliability with self-reported data, Elhadad says that the unprecedented high volume of data will allow her team to “build the right statistical models so we can deal with these limitations.”

Another unique aspect of the study is transparency. Research findings are published as Medium blogs, and participants can export their data to medical providers through the app. According to Elhadad, this also serves as their primary participant engagement technique and encourages dedicated reporting.

The Citizen Endo project appealed to the EFA because it supports their focus on awareness and early diagnosis, says Piraye Yurttas Beim, EFA board member and founder and CEO of Celmatix.

“It will help physicians understand that it’s not just about period pain, and that this is a real chronic condition. It is setting back women and is taking them out of the workforce and not allowing them to live rich lives,” said Yurttas Beim.

Citizen Endo is also open to collaborating with other researchers. They are co-recruiting with the genomic ROSE  study at the Feinstein Institute in order to look at participants’ “qualitative day-to-day life with what’s going on in the genes expressed in their menstrual cycles,” said Elhadad.

After identifying a large number of participants reporting gastrointestinal symptoms, Citizen Endo will also partner with Ubiome in the future to send participants microbiome testing kits.

Elhadad hopes to apply the Citizen Endo model to other underfunded, underresearched areas of women’s health such as polycystic ovary syndrome. She is in the early stages of launching Even, a data-powered Women’s Health Research Initiative at Columbia University.

“There is clearly an issue across the world of women’s symptoms not being heard,” says Elhadad.

More such projects are sorely needed, says Yurttas Beim, who stressed the importance of investing in women’s health research.

“So what we’re learning now is that reproductive conditions like endometriosis are a canary in the coal mine for what a women will experience later in her life–in a sense, by not spending on the earliest manifestations of heart disease, rheumatoid arthritis, and risk factors for cancer, which is what diseases like endometriosis are. We are putting money into reactive medicine and not proactive or preventative medicine.”

What’s It Like Living With Endometriosis? 6 People With The Condition Share Their Story

By AIMÉE GRANT CUMBERBATCH

March 5, 2019

One in ten people who menstruate in the UK have endometriosis. Despite its prevalence, many people don’t know what it is. It’s not talked about, it’s under-researched, and it’s persistently underfunded. For Endometriosis Awareness Month, Bustle UK is hearing from people living with the condition, doctors who specialise in it, and opening up the conversation to help you get the treatment you deserve.

In this piece five people who live with endometriosis share how the condition affects their life day to day. Although coping with a chronic illness is never easy, their words are an inspiring and important lesson in finding solace in friendship and hope in unexpected places, and, most crucially, they highlight why it’s time endometriosis and its impact were taken more seriously.

Living with endometriosis can be summed up in two words — it’s interesting. You never know what day you are going to have because endo likes to creep in whenever she can and throw off your day just like that. I have good days when pain levels are bearable and I can appear like a normal functioning person in society, but unfortunately those days are few and far between. Most days you can find me confined to my house struggling to do even the simplest of things such as walking up the stairs. It takes all my energy to even attempt a shower.The majority of the time my body feels like it’s been carved open like a pumpkin on Halloween. The nausea, dizziness, bloating, and fatigue all add to the generally feeling of being hit by a bus most days. The pain takes my breath away and I have to bite the side of my cheek to stop me from screaming. There have been times where I have collapsed from the pain.I have been in a chemically induced menopause for over 19 months now in a bid to get control of my pain but this no longer gives me any relief. I have been unable to work for almost two years because of endometriosis and the toll it has taken on my body. Endometriosis is so much more than just a bad period.

Jemma

The devastating effects of adenomyosis and endometriosis can be both physically and mentally exhausting. On bad days the pain can be so severe that either I vomit or can’t move. On most days, I still suffer from varying degrees of pain in my lower abdomen, lower back and a hot/sharp sensation radiating up and down my legs. It is rare to have a truly painless day. Even on “good” days (where pain is manageable), I can become so swollen that I look like I’m pregnant. I try my best to laugh this off and disguise it under my ever-growing collection of oversized clothes. That said, I can still feel heartbroken in the knowledge that there’s nothing I can do about it — I have no control over the size of my own belly. I have no control over my own body. I can feel utterly powerless. I laugh regularly, I try to stay positive, and I am lucky enough to have hugely supportive friends and family. That does not mean I don’t find it tough and it does not mean I’m not suffering every single day. Just because you can’t see something doesn’t mean it isn’t there.

Rosy

Living with endometriosis is hard. Really hard. The disease affects over 176 million people worldwide, yet having it makes you feel so alone. The pain is worse than I can even describe. It makes you the best actor. Smiling through horrible pain, working through horrible pain, going to school through horrible pain, but still being able to tell people you’re “fine” because you know they won’t get it when you try to explain why your pain is different than regular period cramps. Every day is a balancing act of doing too much or not doing enough. If you rest, you’re “lazy”, but if you push yourself too hard, you risk being in bed for days. The misery that comes along with the pain is suffocating, and then comes the emotional toll the disease takes. Going from doctor to doctor, hoping that someone will take you seriously. Having your “script” rehearsed when you visit the emergency room so they don’t label you as “one of those patients”. Feeling so desperate for relief that you’ll literally do anything to make it stop. Defending yourself when doctors make you feel like the pain may just be in your head. Imagine what that does to a person?

Jenneh

Imagine having your own body trying to destroy you from the inside out. That’s the reality for so many with endometriosis. We can’t prevent it and we can’t stop it because there is no cure. It has affected my whole life. It slowly but surely drove me from my job because the pain was so severe that I couldn’t get out of bed. I felt so isolated because, how was I supposed to explain to people how I felt when I looked fine on the outside. I couldn’t physically keep up with my friends and it definitely created a wedge. It’s affected my relationship because I need support in everything. My boyfriend has had to be more than a boyfriend, he’s become my carer and helps me with everything. It’s exhausting and has had a huge impact on my mental health. I’m scared for the future and how my health is going to be. Hopefully one day there will be a cure.

Nicole

It’s very hard to put my finger on exactly how endometriosis changed my life, because I haven’t lived a life without it. From being a kid and starting my period, confused and scared as to why I bled through my pad, underwear, and school skirt, up until now — nearly 25, having had two surgeries with another looming to relieve some of the side affects of this confusing condition. Cramps, bloating, nausea, brain fog, UTIs, bleeding when I use the toilet, and this is my every day. It’s a real blood bath (literally) when my period arrives. Endometriosis has ruined relationships, put my social life at a halt, nearly gotten me fired, embarrassed me, caught me short and destroyed my mental health, but the biggest thing I’ve taken from having this curious condition is the community surrounding it. I have made some life-long friendships, I have people check in on me every now and then (and vice-versa) and have even received a care package from an amazing endo-sister and blogger. Every day I am grateful for the sisters I share this condition with. I don’t think I could get through without them.

Alice

Endometriosis isn’t life threatening, but it’s life debilitating which robs you from living a normal life. Living with endometriosis is exhausting, frustrating, painful, and goddamn unfair. I am 25 and have my 10th surgery at the end of his month. That’s all down to damage endometriosis has caused. I long for a day where I will wake up with no pain, but I am also strangely thankful as it has taught me to appreciate everything in life no matter how small.

Anna

A life of pain: One Las Cruces woman’s journey with endometriosis
Diana Alba Soular, Las Cruces Sun-News
March 1, 2018

Las Crucen Dolores “Doe” Gallegos, 47, suffers persistent, often-crippling pain, all thanks — or no thanks, rather — to a disorder called endometriosis.
Gallegos was first diagnosed when she was a student at New Mexico State University in 1990. She was making frequent trips to the student health center because of debilitating abdominal pain. She hit a lot of dead-ends before she found out the actual cause. Her pain was initially attributed, incorrectly, to menstrual cramping.

“I couldn’t walk,” Gallegos said, describing the impact of the pain. “At NMSU, a doctor told me: ‘Just take a handful of Advil.'”

But a physician in El Paso was finally able to determine the real cause as endometriosis, a disorder in which the tissue that normally lines the uterus grows outside the uterus in the body cavity.

“I didn’t even know what endometriosis was when I was diagnosed,” she said. “In 1990, I didn’t know anybody who had endometriosis besides myself.”

For Gallegos, that was the start of a long journey full of not only physical pain, but emotional disappointments caused by the disease. She’s endured 13 surgeries, failed treatments, financial struggles because of high medical expenses and, perhaps the most devastating to her, infertility.

Even today, there are still plenty of gaps in the scientific understanding of endometriosis. But nearly 30 years ago, even less was known about it. Gallegos could only find one book in the library about it. Slowly but surely, she began learning more about the disorder. And today she’s become an active advocate pushing for a cure. She said she’s known more about endometriosis than some of her past doctors — a few of whom had not only a lack of knowledge, but misinformation about it. At least one doctor dismissed her claims of constant pain as a psychological problem, she said.

Raising awareness in March

An estimated 176 million women worldwide have endometriosis — about one in 10 women during their reproductive years. March marks Endometriosis Awareness Month across the globe.

As the Mayo Clinic explains on its website, the exact cause of endometriosis isn’t known. 

Each month, the lining of the uterus — tissue called endometrium — normally thickens in preparation for possible pregnancy. If pregnancy doesn’t happen, the lining is shed, resulting in a woman’s monthly period.

One theory suggests a possible cause of endometriosis is menstrual fluid and endometrial cells moving the wrong way out of the uterus, flowing out the fallopian tubes and into the body cavity where there’s no exit. Endometrium can then start to grow outside the uterus on other organs or tissues.

The cycle that endometrial tissue goes through is under the control of hormones that originate in the ovaries, located next to the uterus, said Las Cruces physician Anthony Levatino, professor of obstetrics and gynecology at Burrell College of Osteopathic Medicine. The hormones disperse throughout the body, he said.

“They’re not just in the lining of the uterus,” he said. “So endometrial tissue anywhere else in the body where it doesn’t belong can respond in the same way as endometrial tissue right in the uterus.”

That means most of the time, the displaced endometrial tissue continues to cycle through the same build-up and breakdown process each month that the lining of the uterus does. However, the residual, unlike tissue inside the uterus, has nowhere to go. The body can absorb this, but sometimes it doesn’t.

Varying effects

With endometriosis, Levatino said endometrium tends to build up around the ovaries because they’re the source of estrogen. It’s akin to “running for the groceries,” he said. In especially bad instances, “cystic masses” grow on the ovaries. 

“When you open those things up, they look like melted chocolate,” he said. “And the reason is that it’s old, broken-down blood. This is one of the reasons that some of these people have a lot of pain.”

Levatino said the amount of endometriosis a woman has doesn’t necessarily correspond to the level of pain she experiences.

“It’s unusual in that sometimes the tiniest little bits of endometriosis can cause the most pain,” he said. “I’ve had patients that were absolutely dying of pain, and you get in with a scope so you can see these areas, and they have literally three pinpoints of it. I had another lady that had so much of it we were scooping it out in handfuls, and she had no pain at all.”

Gallegos described her pain as feeling like a “tumbleweed made out of barbed wire” is inside her and is moving around.

Symptoms of endometriosis

Some of the possible symptoms of endometriosis include painful menstruation, painful intercourse, painful bowel movements, excessive bleeding during menstruation and bleeding between periods, according to Mayo Clinic. Infertility is another possibility, because endometrial tissue and damage done to organs or tissues because of it, can interfere with normal reproductive processes.

Gallegos said that was a devastating part of her own struggle with the disease. 

“It’s a huge emotional thing,” Gallegos said. “I took it very hard not being able to have kids.”

She said she’s friends with another woman with endometriosis who was pregnant with twins but lost one of them, likely because of the disease.

Another characteristic of endometriosis is that it can travel to other organs in the body, Levatino said. It’s rare, but it happens.

“Endometriosis has been found in the brain, in the lungs,” he said. “You would think it was a cancer that way, but it’s not. It travels probably in the blood system or lymphatics — we’re not sure which — and it can show up in other areas. Normally you would associate that behavior with a cancer. But it is not a cancer.”

While most people with endometriosis are women, in rare instances it can affect men.

The only way to diagnose endometriosis with certainty is through laparoscopy, a minor surgery, according to Endometriosis.org.

Dealing with the pain

In the past 28 years, Gallegos said she’s undergone 13 surgeries — 10 of which were directly because of the endometriosis and three of which were to correct mistakes or complications from earlier surgeries. One of the surgeries was a hysterectomy, the removal of her uterus. She’s also taken a range of medications over the years. Once she participated in a trial for a drug. None of the surgeries or medications have been successful in the long term for alleviating her pain, and some of the drugs had negative side effects, she said.

The last surgery Gallegos underwent was five years ago. A specialist in Arizona removed endometrial tissue. For two weeks afterward, the pain disappeared. But it soon returned. Gallegos said she’s decided not to have additional surgeries. She’s prescribed a painkiller called Tramadol.

“Sometimes it works,” she said. “Sometimes it doesn’t.”

Mostly, Gallegos just attempts to carry on her normal daily routine in spite of the pain. 

Because endometriosis is affected by hormones that control the menstrual cycle, women who do experience pain from the disease may notice it lessen and worsen at different times of the month. 

Gallegos said her pain levels did vary in the earliest years, but that variation has lessened. Now, pain is not as great as it was at some points in the past, she said, but it’s more constant than not.

A lot of women who deal with painful endometriosis also experience depression or hopelessness because their quality of life often isn’t good, Gallegos said. Also, some medical professionals don’t take their complaints about pain seriously, which doesn’t help. Family members, too, can feel hopeless because they feel powerless to help a loved one suffering from the condition.

“Nothing is easy about endometriosis, for sure,” Gallegos said. “It wears you down.”

Boosting awareness

Gallegos doesn’t consider herself to be an especially strong person. But she’s determined not to let her often excruciating condition stop her from leading a busy life. As such, she works full time as a juvenile probation officer. And she’s channeled her energy into advocacy efforts, such as fundraising, to boost awareness about endometriosis in hopes of finding a cure.

Five years ago, Gallegos participated in the first-ever national march to raise awareness about endometriosis in Washington, D.C. Women from around the nation gathered for the event, which included a small convention and a performance by Sheryl Crow. 

Gallegos said it was uplifting to meet so many other women from different places who shared the common, unfortunate bond of endometriosis. She’s participated in each of the subsequent national marches, one of which took place in San Francisco. She’s met a lot of new friends who she keeps up with on Facebook. And that’s helped to counter the feelings of isolation she and many women with endometriosis experience.

Marching in Washington, D.C.

Ultimately, Gallegos said participants hope to catch the attention of policymakers who can push for strides to be made in research toward a cure for the disease.

“That’s why we march, and that’s why we want to be seen,” she said.

Gallegos and a small group of supporters from Las Cruces — they call themselves Team Doe for Endo — plan to attend the fifth annual Worldwide Endometriosis March this year in Washington, D.C., taking place on March 24. The group has hosted several fundraisers, including t-shirt sales and a recent 1980s night event at The Warehouse Bar in Las Cruces. She said they’re nearing this year’s goal of raising $3,000 to $4,000. 

Gallegos has attempted to start a support group in the past but hasn’t garnered enough interest from local residents. She wants to begin speaking to high school or university classes about her experience so other women will be aware of the disease and the possibility that they could be affected by it. She’s hopeful a research break-through could turn the tide in the quest for better treatments.

“I don’t want anybody to suffer as much as I’ve suffered,” she said.

Residents wanting to learn more about Team Doe for Endo’s efforts can email Gallegos at meandoegreen@hotmail.com.

Diana Alba Soular may be reached at 575-541-5443, dalba@lcsun-news.com or @AlbaSoular on Twitter.

Endometriosis risk factors
• Never giving birth
• Starting your period at an early age
• Going through menopause at an older age
• Short menstrual cycles — for instance, less than 27 days
• Having higher levels of estrogen in your body or a greater lifetime exposure to estrogen your body produces
• Low body mass index
• Alcohol consumption
• One or more relatives (mother, aunt or sister) with endometriosis
• Any medical condition that prevents the normal passage of menstrual flow out of the body
• Uterine abnormalities
Source: Mayo Clinic