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

“It feels like someone is scooping my insides out with a spoon“
As told to Melissa Shedden bodyandsoul.com.au
March 10, 20172:45pm

Laura Furiosi, 35, has endometriosis, where the lining of your uterus grows in other parts of your body. Hers has even made it to her diaphragm.

 

When I was a teenager, I collapsed from pain in my abdomen. I thought I had appendicitis. It was endometriosis in my uterus and ovaries – but I’m one of the lucky ones because I got diagnosed straight away.

I struggled with it a fair bit over my young teens and twenties. It feels like a deep debilitating pain. It started off around my period but as the endo grows, the pain is there all the time. It can stop me walking and even make me pass out.

I’m now 35, and have been living for around two decades with endometriosis. It’s not just tummy pains, it turns up as referred pain in my shoulder, back and hips. There’s no cure, and for me my only option is surgery to have it excised. I’m fine for a little while after, but then it grows back. I’m up to 15 surgeries now. After, the doctors are amazed I’m walking around. The one I had when I was 21, they found it in places they didn’t know it could go.

It may have been a precursor. I had a massive surgery, recently where they found it on my diaphragm. I’d gone through three years of doctor’s appointments, pleading with them that something was wrong. They checked for irritable bowel, heart problems, asthma, heart burn, lung problems. I even got told, maybe my problem was psychological and I should see a psychiatrist. That stands out as my darkest moment – when someone in the medical profession didn’t believe my pain. It really got to me.

But I knew the feelings and persisted. I pushed through and three years on found a really amazing surgeon, who found the endometriosis sitting right underneath my liver. He was the third surgeon to look, and he only found it because he tipped me on my side and the liver flopped over and it was under there. I was so ecstatic he’d found it because it hadn’t come up in scans.

I’d only heard of diaphragmatic endometriosis, when I was searching for answers to my pain on an online support group I’m part of – a woman on there had it. I’m unsure of the exact numbers but I know it’s pretty rare.

Living with pain

It affects everything. I was doing kickboxing but I had to give it up because it was too painful for my diaphragm. I’m also in a choir, which I adore, but the long notes are nearly impossible.

Twice I’ve taken hormonal drugs, so I can give my body a break for six months and get overseas to do trade shows for my company. It’s sort of like early menopause and a last resort. I’ve heard it can help others long-term, but for me it only holds off the inevitable, it doesn’t fix it.

I’m lucky I run my own business, because if I didn’t work for myself, I wouldn’t have a job. I own a toddler and baby swimwear label called Rashoodz. We’re distributed in Walmart and made a huge deal in China in July. I want to show women you might have a disability or disease, but you can find a way to get around it and achieve.

Endometriosis is not taboo but people might roll their eyes because it’s an invisible disease. People see me going overseas and walking my kids to sport, and I can tell they think, ‘she doesn’t look sick’. What they don’t know is that I’ve taken painkillers and had to sleep at lunch, just to walks my kids home from school.

We need to talk about endo

Living with endometriosis is not something I talk about much with people who don’t understand. I need to start talking about it more so we get somewhere with it because one in 10 women have it. It’s not just about periods and infertility, it’s a chronic disease that can ruin your life and you can get it anywhere – your brain, lungs, diaphragm, you name it – and there’s no cure.

This is why I’m persisting with pushing for more research and awareness. I’m also a mother of three girls – 10, 8 and 6. I have missed school presentations and birthday parties, because I’ve been in hospital. They’re used to it and my husband has really stepped it up, but the possibility that one of my girls may have to experience endometriosis one day, fill me with dread.

If I could go back and talk to myself as a young woman, I’d say, ‘find yourself an endo specialist’. I would have managed to avoid a lot more surgeries. Most importantly, stand up for yourself, you know you, and develop a thick skin. Look after your mental health and prioritise self-care. I’m lucky to be able to share regular mental health days with my friends.

I’m asking Australians to support March Into Yellow – a movement to start a conversation about endometriosis. Anybody can wear yellow for the month of March and set up an everyday hero account to raise funds. Let’s find a cure.

Laura Furiosi is an Endo champion. Find out more about the disease at endometriosisaustralia.org

Follow Laura’s 30 days of yellow

Donate to Laura’s everyday hero account

Shame, Dismissal, Agony: Women with Endometriosis Speak Out
By Gillian Edevane

 
Simple chores, like taking out the trash or folding laundry, cause stabbing pains to rush through Silvia Young’s abdomen. 

“It feels like my internal organs are wrapped in barbed wire,” Young said in a recent interview. “Every move hurts. Sometimes, I can’t even breathe.” 

The 46-year-old Danville woman consulted more than 25 doctors over the last three decades to treat endometriosis, a puzzling condition in which tissue similar to endometrial lining grows outside the uterus and bonds like glue to other organs. There is no known cure or cause for the illness.

Patients with severe cases wind up with fertility troubles, repeated invasive surgeries and out-of-pocket medical bills totaling tens of thousands of dollars. The condition, for which there will be an awareness march at San Francisco’s City Hall on March 25, has also been linked to heart disease and some forms of cancer.

An estimated 5 million women suffer annually from endometriosis in the United States, yet medical experts and patients told NBC Bay Area it’s commonly dismissed as a non-serious ailment and frequently misdiagnosed. Some women are turned away and labeled ‘drug seekers,’ while others languish in silence.
The average patient waits almost 10 years for a proper diagnosis — a decade in which endometrial lesions are left to breed and organs have time to fuse together. 

The San Francisco march is meant to empower those women to share their stories. For too long, advocates say, women have been told to hush up about ailments affecting reproductive health, a trend of mass silencing that results in inferior care.

 
“Raising awareness is really all we can do at this point,” said Young, who co-founded the website Unite Endo and is organizing an online-only campaign, #FemTruths, for women who can’t physically participate in the march due to pain. “There’s a lot of shame with this condition, so being vocal about what we go through and coming out of the shadows could help make change.” 

Advocates are also hoping the visual display will produce more funding for research. The National Institute of Health estimates $11 million in funding for studying the condition in 2017, a pittance compared to conditions that affect a similar number of people, such as diabetes. 

“Women are literally killing themselves because of this,” said Dr. Peter Gregersen, a New York-based researcher who has been studying genes that could be linked to Endometriosis. “But the funding is pathetic. There are endless stories of the travails that these women have, and most gynecologists don’t know a lot about it, or they have an attitude about it that is not commensurate with its degree of severity.” 

Because the disease can only be diagnosed through exploratory surgery, called laparascopy, many doctors will wait until a patient presents with infertility to investigate, Gregerson said. By then, any lesions could have spread to other organs. 

 

But that’s not the only roadblock stymying diagnoses. Long-established gender biases in healthcare may be partly to blame, too. Studies have shown that women are treated less seriously compared to male counterparts when presenting with pain in emergency rooms.

“Unfortunately, I think a lot of doctors don’t really believe women are having this much pain,” said Dr. Andrew Cook, a Los Gatos reproductive endocrinologist who specializes in pelvic pain disorders. “Lack of proper training, lack of believing the patient. There are a lot of factors in play.” 

Some women are also taught that immensely painful periods — one of the telltale symptoms of the condition — are to be expected. 

“The culture says to them, ‘well, pain isn’t abnormal,” Gregerson said. “”Maybe pain is something you should suck up.’ So, the condition isn’t treated unless it’s severe.”
Peggy Santa Maria, a 63-year-old Los Gatos woman, worked for decades to have her condition taken seriously by insurance providers and doctors. Along with her husband, she now runs the “Endo Inn” out of her home, a safe space where women can stay free of charge before and after surgery.

More than 100 women have walked through her doors in search of someone with whom they can commiserate. 

“Just to be believed can be a huge relief,” Santa Maria, who is also the President of the Endometriosis Association of San Francisco, said. “To cry with someone, to hold them and become better through the tears.” 

For low-income women living with the condition, additional hurdles abound after diagnosis. Visits to an endometriosis specialist are often deemed “out-of-network,” leaving many women scrambling to find care. 

Denita Espito, a San Jose woman who relies on Medicaid for healthcare coverage, knows the burden all too well. 

For years, her gynecologist prescribed birth control pills and doled out drugs for pain management, but nothing alleviated her crippling cramps. She was then presented with a “cure-all” hysterectomy, a surgery in which the uterus is removed and menopause is jumpstarted.

Desperate to live pain-free, she went through with the surgery, but it didn’t help. Instead, doctors stopped taking her pain seriously, she explained through tears.
“I feel bullied by the doctors,” she said. “Like it was just a way to get me out. It has ruined my life, and I just know it’s not going to be over until I die.”

She was dismissed as a “drug seeker,” a label given to many endometriosis sufferers who demand pain management, Gregerson said. She can’t afford to see experts in Thoracic Endometriosis, a rare form of the disease that could be causing the sharp pains in her chest that she equates to “getting stabbed over and over again by Freddie Krueger.” Sometimes, the pain is so bad that she passes out.

“It’s just not fair,” she said. “If you have money, if you’re privileged, this is more manageable. But if you can’t afford the treatments, you’re forgotten about and pushed to the side. It’s like your body doesn’t matter. It’s like you don’t matter.” 

Espito now counsels women about the added struggles that befall low-income women with the condition. Though she wants to participate in the march, she can’t due to constant pain and is counting on allies showing up in her stead. 

Dr. Tamer Seckin, a gynecologic surgeon who co-founded the Endometriosis Foundation of America, told NBC Bay Area that it’s not uncommon for women suffering from endometriosis to find themselves regretting surgery. 

In his practice, he has seen teen girls given unnecessary hysterectomies by doctors who are not properly trained in other methods, such as excision therapy, which is the procedure he and Cook recommend. It involves meticulously cutting lesions away and separating organs that have fused together, but it’s an expensive procedure. 

“A hysterectomy is not going to help if the endometriosis has grown outside the uterus…” Seskin said. “I have had girls at the age of 17 given hysterectomies. It’s indiscriminately prescribed as treatment. It’s hard not to shed tears when you see these women.” 

After the march later this month, Young, Espito and Santa Maria hope to reach other women who may be suffering in silence. Meanwhile, Cook, Seckin and Gregerson are working within the medical community to increase awareness about the need for early intervention and proper treatment. 

All agree: when women’s pain is taken more seriously, outcomes will improve. Better funding and treatment will follow, they hope. 

“I just want everyone to know about it, so we can do something,” Espito said, wiping away tears. “We’re not depressed, we’re not sad, we’re not wrong. We’re human. And all we’re asking for help.”

Worse than the pain? The shame.

Unresponsive doctors and others who don’t understand add to the anguish endured by women with endometriosis.

 

March 2, 2017
Story and photos by EVE EDELHEIT
Times Staff Photographer

I couldn’t believe it was back.

I was in Jacksonville, about to photograph my first out-of-town college football game as the solo shooter, and there I was, crying on the floor of the media bathroom, clutching my abdomen. It felt as though a shadowed figure was stabbing me again and again. I gripped the toilet bowl to try to stand, but was frozen in pain.

I’d had surgery three years earlier to make that feeling stop. But endometriosis has a habit of coming back for more. It develops when the lining that’s supposed to be inside a woman’s uterus grows, instead, on the outside. That tissue thickens. It gets trapped in places it doesn’t belong, irritating organs, forming scar tissue and cysts. Mine had left little noncancerous tumors all over my uterus, bladder and ureter, making every menstrual cycle feel like I was passing a kidney stone.

I still don’t know how I made it onto the football field that Saturday in 2014, how I managed to waddle from end zone to end zone for four hours and turn in 42 photos. I did it to show I could, just like any of the men holding cameras. But it wasn’t just determination driving me; it was shame. I didn’t want to let on that there was a problem, because I was embarrassed by it.

You can’t talk about endometriosis without talking about your period. Hormones from that time of the month command the misplaced tissue to break down as if it were a normal uterine lining, except instead of breaking down, these cysts just stay where they are and inflict pain. The worst days found me in bed, unable to move.

I imagined finally having that conversation with my male boss and colleagues, talking about how menstrual cramps feel like birthing contractions, how peeing hurts so much, it makes me cry. I pictured a subtle look of disgust flash across their faces. Or the thought that I was a complainer, that I couldn’t handle what every other woman could, that maybe I couldn’t handle other things, like challenging assignments.

So I told them I was out with a cold.

I chose to live in pain for more than a year rather than schedule a surgery. I withdrew from my friends and fell into depression. My work suffered; it was hard to stay present, to be ambitious, when I was so distracted. I was lashing out at my fiance, who bore the burden of being my caretaker. Questions kept me awake: What would it mean to miss so much work? Could I continue on a career path I loved so dearly but was so physically demanding? Would I ever be able to get pregnant? Even if I had surgery, would the pain just come back again?

Endometriosis cast a cloud over my wedding and honeymoon, and that’s when I decided I couldn’t go on like this. I got the surgery last summer, and finally had that conversation with my boss that I had put off for so long. The only look on his face was concern. “You’ve been so stoic,” he said. “I wish you would have told me. I had no idea.”

So many people have no idea about this disorder that afflicts millions of women around the world. That’s why I set out to do this photo essay. I joined online support groups and found others with stories just like mine, who have suffered with perhaps the worst symptom of this disorder, loneliness.

I photographed nine women of different races and ages; endometriosis doesn’t discriminate. I traveled from Tallahassee to Miami trying to make them feel like their voices were heard, like they no longer needed to be ignored or afraid, but empowered to speak up.

In talking to them, I felt less alone.
 

•••
 

Erin Shell Modglin, 36, New Port Richey, unemployed
Her symptoms started at age 10, but she wasn’t diagnosed until she was 22. She has had 14 surgeries.

The person you were before endo is no longer there. They’re gone. You have to find your new self, your new normal and your new happy. … If you dwell on your life before endo, it will put you into a deep depression, because you can’t go back, you can’t be that person.
 

•••
 

Aleka Sapp, 39, Tallahassee, unemployed
She had symptoms when she got her first period, but she wasn’t diagnosed with endometriosis until she had a total hysterectomy.

I don’t want to have sex. It changed my whole view about sex. Everyone is like, “Sex feels so good, it’s great.” And I’m like, “But doesn’t it hurt?” When I was young, it was more pleasurable to have sex. But now I don’t want to go out on dates because I don’t want that responsibility of having to fulfill that sexual part of the relationship. Because you don’t want to feel that pain”
 

•••
 

Katie Gowan, 34, Brooksville, unemployed
She was diagnosed with endometriosis three years ago and has had a total hysterectomy.

Sometimes family is the hardest to deal with. They will say things like, “You looked fine yesterday.” Or, “This, too, shall pass.” I fear death every day.

•••
 

Stephanie Lebow, 23, Celebration, works at Disney World
She was diagnosed one year ago by her sixth doctor, and she has had three surgeries.

She found the endo. It was there. I wanted to cry. I was so happy. It’s an incredible feeling to have a doctor believe you and do something about it.”
 

•••
 

Rachael Pressley, 33, Tampa, social worker
Rachael Pressley was diagnosed with endometriosis in 2015 and has had two endo surgeries.

Each appointment, each month I would come back and say, “Hey I have this pain. Hey what you gave me isn’t working and I’m still in pain every day. I’m still crying when my period comes and my gremlin is scratching to get out.”
 

•••
 

Meg Connolly, 25, Miami, entrepreneur
She was diagnosed with Stage 4, or severe, endometriosis at 23.

I still have that scar in my mind of what I went through and I’m always afraid it’s going to come back. … One word to describe endometriosis and what it’s done to me? Hell.
 

•••
 

Bianca Semprit, 25, Hialeah, computer programmer
She was diagnosed with endometriosis in 2012 and has had one surgery.

If I could just run again. If I could just take off and I decide when I stop. There’s something that you take for granted. When you have one thing after the next against you, especially something that doesn’t go away, you just want to be able to say, “I’m okay right now.’” I want to be able to get to that point. I’m not there yet, but I’m really trying.
 

•••
 

Darcy Frick, 24, Holiday, works at Jimmy John’s
She was diagnosed with endometriosis 1 1/2 years ago. She has had one surgery.

I think it’s a really lonely disease. You spend a lot of time turning down plans. I felt like a terrible friend. I felt I was the one not being attentive enough to my other friends. I couldn’t. I would go to work all day and it would just suck the energy out of me. You have no energy when you are in that much pain.
 

•••
 

Mandy Miller, 34, Winter Haven, stay-at-home mother
She was diagnosed in 2009 and has had two surgeries.

I was going to school to become a teacher and work with children. Then all of a sudden I’m thinking I can’t be around other people’s children if I can’t have my own and that’s an everyday reminder of something we have no control over.
 

•••
 

About this story

For this project, I wanted to take a different approach than I normally do on my daily newspaper assignments. I wanted to slow down and challenge myself, so I opted to photograph the portraits on medium-format film on a friend’s Hasselblad film camera. Taking time to focus the camera and being more selective about why I was making each portrait allowed me to spend more time talking and connecting with the women. The photographs were taken where each of them experienced the most pain.

I relied heavily on social media throughout this project and shared it on multiple platforms under the hashtag #endosistersfl while working on it over the past six months. As I plan to continue this project, please reach out to me if you would like to be a part of the series or know someone who would.

Designed by Lyra Solochek. Contact Eve Edelheit at eedelheit@tampabay.com. Follow @eve_edelheit.

How Pets Help People With Chronic Pain
November 16, 2015
By Linda Cole

Growing up with a parent who suffered from rheumatoid arthritis, I saw firsthand the difficulties someone with chronic pain lives with each day. It can be hard to get up in the morning, do daily chores and give 100% at work. My mom did the best she could with everyday activities. I know how tough it was at times, but her pets gave her motivation to crawl out of bed each morning. Pets are beneficial to our health in many ways, and they can help people with chronic pain.

We all experience pain at some point in our lives. Whether it’s chronic pain or acute pain from an injury or medical issue, pain is a normal sensation in the nervous system that says pay attention. Acute pain is generally something that can be treated. Chronic pain is much different, and defined as pain that lasts for at least three months or longer. The impact of chronic pain can range from mild irritation to life changing restrictions that can affect a person’s emotional and social outlook as well as physical health.

It can be difficult for doctors to find the cause of chronic pain, and managing the pain becomes an ongoing challenge. Constant pain can make it hard to get moving in the morning. Some people are forced to give up a job they love. It can cause a person to withdraw from family and friends, become depressed, feel isolated from the world, and even lose their sense of identity. It’s hard to explain how debilitating chronic pain can be to people who have never dealt with it. You can’t always see someone’s pain, and it’s an invisible disability.

Pets can be lifesavers for people with chronic pain. Caring for a dog or cat helps distract the mind from pain and shifts the focus onto another living being who needs attention, food, grooming, walks and playtime. Teaching a dog basic commands not only makes him easier to control, it can help someone with chronic pain train their pet to help them with some everyday chores such as retrieving dropped items and fetching things. Pets can also help by simply laying next to an aching joint to provide warmth and relief.

A feeling of isolation is common among people with chronic pain. It’s hard for family, friends and co-workers to empathize when they don’t understand how you feel, but a pet is always there to provide emotional support and much needed companionship. Pets give their love unconditionally and don’t cast judgment. Sitting and talking to your dog or cat can help decrease feelings of loneliness, depression and isolation. Cats especially are said to have a calming effect on humans – more than any other animal, in fact. A pet will listen to you talk as long as you want to, and petting your dog or cat while talking to them helps loosen up stiff joints and muscles.

Pet owners with chronic pain understand that no matter how much they may hurt, their animal still needs to be cared for. The simple act of petting a dog or cat releases endorphins, the body’s natural pain and stress relievers. Interacting with a dog or cat causes an increase in oxytocin levels for bonding, and serotonin levels that modify sleep, mood and pain. Spending time with a beloved pet also increases dopamine levels that provide a feeling of happiness, and decreases cortisol levels which reduces stress, anxiety and depression.

 

Cats and dogs can remind people with arthritis that it’s time for a good stretch. It’s important to keep moving, and low-impact aerobics and stretching helps build muscle, improve endurance and relieve pain by maintaining range of motion in joints so they don’t stiffen up. When you see your pet stretch, join him!

Pets are sensitive to when their owner isn’t feeling well, and sometimes one of the best things you can do for yourself is to take the dog for a walk or toss a ball for him to fetch. Exercise takes your mind off your pain and helps maintain a healthy weight, which can also help reduce pain.

Chronic pain can wear a person down over time, but it’s hard to ignore a cat gently touching your face with her paw or a dog resting his head on your lap as if asking, “Can I help?” Both are sincere gestures that say you’re not alone. Pets help ease chronic pain by making us laugh, releasing endorphins. Laughter is one of mankind’s best medicines, and our pets provide plenty of reasons to laugh every single day.

Top photo by Anne Beaumont/Flickr

Bottom photo by Les Chatfield/Flickr

For Endometriosis Awareness Month, I have put some questions to my endo sisters, and have invited them to share their journey here with you.

Meet Nicole:

How long you have been suffering?
I have been suffering for just over a year.

What does your pain feel like?
Emotionally, the pain makes me feel like I am on an awful roller coaster that never ends. I will sit and stew about how much I hate my husband and then I get in the car and hear a song and burst into tears because I love him so much. I feel paranoid that people are looking at me or talking about me. I get so desperate because no one will help me.

Physically, I get nauseous. I throw up. I get diarrhea and then when I am bleeding, I can’t go to the bathroom. If I do get lucky enough to go, I have waves of labor pains that follow. I pee blood. I limp because the pain goes all the way from my back down to my toes on one side. I bloat up like I am nine months pregnant. The pelvic pain feels like someone is stabbing and then twisting the knife. It makes me wish someone really would just so it would all stop. I can’t stand up but I can’t sit down. It is awful.

What you have tried in order to be pain- or symptom-free?
I have taken just about every non-prescription drug you can try. Over the counter pain relief doesn’t touch the pain. Gas X, stool softeners, acupuncture and herbal remedies as well as hormone injections from the doctor, special diets, etc. etc. I find the most relief comes from Tramadol, heating pad and my mobile TENS unit. I am still looking for, researching and trying other remedies. I will not give up.

Have you ever been discriminated against at school, the workplace or the public eye, just for being ill from Endometriosis?
My job made me fill out FMLA paperwork. They still make it extremely difficult to get time off. I had to go through the embarrassment of telling HR all about my problems, symptoms and doctor visits. They also were then allowed to ask my doctors God knows what before signing off on it.

As for my co-workers, they have made living with the disease even more difficult. “You don’t look sick. You are a hypochondriac. You need to stay off the internet. There is nothing wrong with you. Everyone has had that and they were fine after a hysterectomy. What’s the big deal? Look at what you are eating. No wonder your stomach hurts all the time!” Then after each doctor visit, with no new answers or cures, you get the smirks. They scoot together and whisper.

Do you have access to adequate health care?
I have very good insurance…for everything except an excision specialist. I cannot leave the state and there are no specialists in my state. I have gone doctor to doctor, always leaving with the same answer, “There’s nothing we can do. Lupron is your only option.” Unfortunately that is the one thing I refuse to try.
In August I had new symptoms arise (all of the veins in my ankle burst) and my doctor did an ANA test. As many women with endometriosis are at higher risk for autoimmune diseases, I tested positive. I have now also been diagnosed with Arthritis in my low back and ankle as well as Fibromyalgia and IBS. My last rheumatology visit discovered that I am also vitamin D deficient. I have been put on Gabapentin for my severe PLMD, daily meloxicam for my Arthritis and am taking extremely high doses of vitamin d trying to get my levels back up. I refused cymbalta because my rheumatologist has never said it, but I think he thinks it is all in my head. He is sending me to the gastroenterologist next week because he wants to confirm his diagnosis of IBS and not something like Crohn’s. The journey just never seems to end.

Do you have an in-person support system (family, partner, friends, etc.)?
My family has been great support even though they can’t always understand. For the most part, my friends have been very supportive as well. After a while, you just get tired of talking about it and think they must be tired of hearing about it as well. Sometimes they think I am doing better just because I haven’t said anything in a while.

What are your best coping mechanisms?
On the journey I have been on in the last year, I started journaling. It seemed to help and gave me something else to focus on when I get up at 2 and 3 in the morning daily. I decided to publish my story in hopes to help people like me not feel so isolated and alone. I wanted to share my story with people who love Endo sufferers because the things they sometimes say and do can inadvertently make you feel worse. I hope they will become more aware of how words can affect someone who is suffering or what it actually feels like to have this disease. Finally, I wish more doctors would read my story so they can truly know what their patients are going through instead of just listening to a laundry list of symptoms.

Anything else you’d like to say?
My book is called Endopocalypse.