I first heard about Henrietta Lacks through a friend three years ago when she shared a news article about Johns Hopkins naming a new research building after her. In that article, I learned that “Henrietta Lacks was a young mother of five from eastern Baltimore County who, despite radiation treatment at the Johns Hopkins Hospital, died in 1951 of an aggressive cancer. Lacks was the source of the HeLa cell line that has been critical to numerous advances in medicine.”

When I first read the article, I thought that was pretty cool that Johns Hopkins was trying to right the wrong they had done decades prior; they took Henrietta’s cells for scientific study without her permission and immediately reaped the benefits of science because of her. But she died from the aggressive cancer. I understood when I read the article that naming a building in her honour is nice and all, but I feel there is still so much more that needs to be done to do right by her family specifically.

You might be asking, “how does the story of Henrietta Lacks relate directly to Endometriosis?”

Over the past 19 years, I have subscribed to several medical journals in an effort to try to learn more about endometriosis. Whenever I felt I had a decent understanding of the research, I would regurgitate what I learned by posting to this blog. Occasionally I would run across the term “HeLa” in some of those research papers, but the science and language of the papers was over my head, so they never got posted here, though I kept them in a folder^{1, 2, 3}. So while I had seen the term “HeLa” in endometriosis-related research papers and medical studies, I didn’t know the Very Important History behind the HeLa cells.

Even at the time of seeing the Johns Hopkins article my friend had posted three years ago, I still hadn’t quite put the history and significance together. It was one of those “I think I’ve seen that term somewhere before but can’t recall where…” and in fact, it had been almost a decade since I’d seen that term, as indicated by the linked references above. This also sadly corresponds to me having abandoned blogging about endometriosis for many years in the wake of a devastating divorce, whereupon I was made to feel that I was ‘obsessed’ with being sick by constantly talking about endometriosis with friends, family, in my blog and in my video series. The ex spouse used this as justification for their affair, and even went so far as to say that he couldn’t take care of me anymore, despite the fact I was employed full time as a preschool teacher and was also engaged in hobbies outside of the home at his request. But I digress…

As I was saying, I still hadn’t quite put the history and significance together.

Until May 2021.

That’s when another friend shared an MLive article about Henrietta Lacks – this time in regards to the COVID-19 vaccine. I was moved by the article in many regards:

• I didn’t know the Pfizer vaccine for COVID-19 was developed in Michigan until I read that article, and it just so happens that the Pfizer vaccine is what I received in April, 2021, and I’m also originally from Michigan.
• The vaccine was developed using the HeLa cell line, and the article went into much more detail about Henrietta Lacks and her family legacy than the Johns Hopkins article had.
• And her great nephew Jermaine lives in Michigan, and has been honouring his Great Aunt Henrietta by teaching others about her and how her immortal cells are contributing to major scientific breakthroughs to this very day.
• Jermaine started out with an art exhibit in a Kalamazoo Michigan library, then developed a virtual presentation to continue educating people during the pandemic, and now he’s taken it on the road as The Immortal Life of Henrietta Lacks Traveling Museum.

Additionally, there is also a book, published in 2010 titled The Immortal Life of Henrietta Lacks, which I finally purchased last year. Rebecca Skloot, the author of that book, also created The Henrietta Lacks Foundation, which I donated to. The Foundation’s statement reads:

Established in 2010 by Rebecca Skloot, author of The Immortal Life of Henrietta Lacks, the Foundation is inspired by the life of Henrietta Lacks, whose cancer cells—code named HeLa—were taken without her knowledge in 1951. They became one of the most important tools in medicine—with damaging consequences for her family, many of whom often struggled to get access to the very health care advances their mother’s cells helped make possible. Unfortunately, there are numerous examples of historic research studies conducted on individuals—particularly within minority communities—without their knowledge or consent. These include the Tuskegee Syphilis Studies, the Human Radiation Experiments, and others. The Henrietta Lacks Foundation seeks to provide assistance to individuals and their families who have been directly impacted by such research. The Foundation also seeks to promote public discourse concerning the role that contributions of biological materials play in scientific research and disease prevention, as well as issues related to consent, and disparities in access to health care and research benefits, particularly for minorities and underserved communities.

The Henrietta Lacks Foundation

In May 2021 after reading the MLive article, I was so overcome with gratitude for the immortal cells of Henrietta Lacks that I declared, “I need a Henrietta Lacks saint candle, okay?”

Saint Candles are pretty pop-culture, but I couldn’t find one anywhere for Henrietta Lacks. In December 2021, I searched again to no avail, so I looked up some companies creating Saint Candles and picked one I felt might be a good fit. I emailed a store in New Orleans called Mose, Mary and Me. I told them a bit about Henrietta Lacks and why I felt she should have a Saint Candle. Initially it was a custom order for me and my friend who had told me about Mrs. Lacks a few years ago, but both me and my friend hoped the candle would also be added to Mose Mary and Me’s existing line of candles. Great news! It has! You can buy a Saint Henrietta Lacks candle, too! Mose Mary and Me chose the image based upon a painting of her at the Smithsonian National Portrait Gallery (read about the portrait here).

If you purchase a Saint candle, please also pop over to the Henrietta Lacks Foundation and make a donation so that we may also continue to honour her family and the Black community while we thank Henrietta Lacks for the medical breakthroughs that have allowed us to better understand endometriosis.

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.

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.

‘Pain’ and ‘uncertainty’: A young woman shares her struggle with endometriosis
Mar. 4, 2016 at 12:36 PM
Chandelis Duster
TODAY

Endometriosis, the word itself sounds like an incurable disease, and unfortunately that’s true.

I should know. I have it.

Endometriosis — or “endo” — occurs when cells that line the uterus spread to other places of the body creating implants and adhesions, or internal scar tissue. These implants can end up on the bladder, ovaries, bowels, and can even spread to the lungs.

Endo’s symptoms
The disease’s symptoms include painful bowel movements, pelvic pain, lower back pain, and the most common symptom — painful periods. When actress Lena Dunham announced that endo would prevent her from joining the promotional press tour for the fifth season of her hit HBO show “Girls,” I could relate.

As could many other women. The Endometriosis Foundation of American says endo affects 176 million women and young girls worldwide, 8 million of them in North America.

 

 
My endo story began at age 9 when I had my first period. I’ve had painful periods my entire life and missed many days of school because of them. I’ve even fainted a few times from the pain. My periods were heavy, lasting from 7-10 days. In high school, my mom sensed something was wrong and took me to a gynecologist.

The doctor told me my pain was normal, and at 16, I was put on birth control to regulate my periods. I was given Naproxen for pain and told to take an iron supplement because I was anemic.

A diagnosis — at last
It wasn’t until my freshman year in college that I discovered endo was the culprit. At the campus health clinic a cyst the size of a grapefruit was found on my ovary.

On February 27, 2007 — a date I’ll never forget — I had laparoscopic surgery to drain the cyst. When I woke up, the doctor told me everything had gone well, but they’d also found endo in my cul-de-sac, or the back of the uterus.

I remember saying, “Endo what?”

At 18, my world was shattered. I had a disease with no cure. I felt like a freak. I was embarrassed.

I had a thousand questions: What is going to happen next? Is this going to spread? Why me?

Not to mention how long I’d suffered. The Endometriosis Foundation of America says there is an average of six to 10 years of delay in diagnosis. Laparoscopy is the only way to correctly diagnose it. It can’t be detected through an ultrasound or CT scan.

Though endo’s cause is unknown, the retrograde menstruation theory suggests that endometrial cells flow back into the fallopian tube, causing growths.

My life today
Today, I’m 27 and still dealing with endo and the symptoms that come along with it. I’ve been on several treatments and all of them have been a mixed bag. Prescription pain medications such as Percocet make my stomach hurt. I was on six months of Lupron, which makes a woman menopausal during her time on it. I’ve also had three laparoscopic surgeries.

 

 
I had my last surgery in December 2014 while in graduate school earning a M.A. in Broadcast Journalism and Public Affairs from American University. During the procedure, endo was found again — this time on both sides of my pelvic wall and again in the cul-de-sac. Prior to that surgery, my pain was so severe that simple things like sitting in a chair became a challenge. It felt as if someone was pulling my pelvic area apart and sticking a knife in my lower back all at the same time.

A year later, I’m feeling better, but I still have flare-ups. My lower back pain is intense, so I sleep with a heating pad every night for relief. My current treatment is taking a low-estrogen birth control pill continuously without having a monthly period. Doctors believe this is the best option if I want to preserve my fertility and not have hysterectomy.

Yes, endo is also known to cause infertility. I’m terrified I will be one of the women who will experience it.

I’m not sure that this treatment or any treatment will prevent endo from spreading because no matter what, mine keeps coming back.

Until a cure is found, there’s always that uncertainty, that nagging pain, the medications, and the possibility of a fourth surgery some day.

As tired as I am of endo’s terrible spin cycle, all I can do is sleep with the heating pad every night, take my Vitamin B12 pills for energy, hope for the best and keep going.

Chandelis Duster is a Desk Assistant in the NBC News Washington D.C. bureau and the co-founder of Virginia HOPE, an organization that helps women in Virginia who have endometriosis.

Some more endo information, but this is more real. Typically I will only do videos on good days. Well, NO, people need to see it all. The good the bad and the ugly.

Sallie’s story may echo familiar to women around the world who suffer from Endometriosis.

Sallie struggled for nearly 15 years with the debilitating pain of endometriosis before even learning the name of her medical condition, and her insurance refused to cover her first surgery.

“Many doctors told me nothing was wrong with me.”
“Professors tried to kick me out of Physical Therapy school because of my back pain.”
“Co-workers…called me lazy”
“But this pain was real. I was not crazy, and neither are any of you.”

“We deserve timely care.
We deserve multi-disciplinary care.
We deserve adequate medical coverage.
We deserve to know the cause of endometriosis
And most of all, we deserve a cure.” – Sallie Sarrel, March 28, 2015

Recently awarded the Passion Award by the Woman’s Health Foundation, Dr. Sallie Sarrel is a Women’s Health and Pelvic Pain Specialist in New Jersey. I know Sallie as an Endo Sister from the online forums.
You can find her online at http://www.salliesarrel.com/

Drastic treatment for endometriosis after 20 years of pain
by Jill Margo
Mar 25 2015 at 12:00 AM

Eugenie Lee’s self-portrait, called ‘Attached to My Adhesion’, depicts the psychodrama of her chronic pelvic pain. ‘Standing in the room on my own is a metaphor for the private and lonely nature of pain – no one feels the same pain, nor can it be shared. I turn my back to conceal from the viewer that I have my hands around my throat.’

For almost two decades, Eugenie Lee’s life was dominated by chronic pelvic pain. It dictated what she could do, where she could go and what she could eat. Every monthly period brought her seven to 10 days of dramatic and incapacitating agony.

She tried valiantly to manage her endometriosis, a condition that occurs when the tissue that lines the uterus grows outside of it.

She was also managing adenomyosis, when the same tissue grows into the muscular wall of the uterus. Lee, a Korean-born visual artist based in Sydney, could find no relief.

“The pain was all-consuming and felt like a ball of barbwire scraping against the walls of my organs. There was nothing else I could focus on but it,” she says. “The urgency and desperation to stop it was so strong, I just wanted to find an escape.”

There were dark times when she contemplated ending her life. Knowing most pain medication is for acute not chronic pain, she continued to use it despite the side effects.

“It made me feel I was doing something about my pain. There was nothing else I could think of, but sometimes recovering from the side effects took longer than the pain episode itself,” she says.

While the pain predictably came with menstruation, during the menstrual period it was unpredictable. It would occur suddenly and she would have no idea how intense or long it would be.

During an episode she found it hard to string a sentence together, couldn’t read and could only whisper. “I couldn’t walk, sit down or lay down – every position hurt. Even drinking water would make me vomit. I used to crawl to the bathroom.”

While the pain was limited to menstruation, Lee lived in a state of anticipatory dread, anxious and counting the day until the next episode would surely arrive.

She found people had little understanding of her “invisible” pain and occasionally encountered a “Knock it off, princess” type attitude.

“People think of pain in simple terms. They think of it as a symptom – and in acute pain it is – but in the case of chronic pain, it’s a disease,” Lee says.

Between her menses, she would slowly recover from the blood loss, lack of nutrition and dehydration. She would walk around her Pyrmont house for a couple of days to get her strength back and then venture out to her studio.

With her life planned around her pain, she learnt to keep it from friends and colleagues. “I stopped committing to anything because there was a high chance I’d have to cancel at the last minute. I lost a friends and credibility because of it.”

In August last year, Lee had a hysterectomy. With her uterus gone, the hormonal pain cycle went, leaving a manageable residue of muscular pain. “Before I had no control over the pain; it controlled me,” she says. Now she is taking back control and trying to regain lost years.

The pain has, however, has been a rich source of creativity and much of her painting and installation art has grown from it. In her paintings, many say they “see” echoes of Frida Kahlo.

Retford: Brave Aimee determined to raise awareness of endometriosis after being diagnosed with condition on 24th birthday
10:09
Monday 02 March 2015

KEEPING POSITIVE: Endometriosis sufferer and camaigner, Aimee Finlay, pictured with her husband Nick

Aimee Finlay, 25, was struggling with chronic pain for 11 months with no known cause and was told she had endometriosis in January 2015 after laparoscopy surgery.

The condition, which results from the appearance of endometrial tissue outside the womb, was so severe in Aimee’s case that her ovaries had fused to her pelvis, leaving her in ‘indescribable pain’.

Aimee said: “On my 24th birthday, I was told I would have this illness all of my life. There is no cure.”

“In the 11 months before my surgery, I was admitted to hospital several times. I had out of hours appointments, scan, texts and x-rays, and time off work which resulted in a sickness review hearing. I then had to leave full time employment.”

“Although my husband, Nick, was extremely supportive, I expected the doctors to help, to find answers and to know what to do next. I felt extremely confused, frustrated and alone.”

Aimee said that after her diagnosis, she looked up the condition online and found that they were countless women in her situation.

“Some of these women have gone years without a confirmed diagnosis. They were struggling every month to manage the pain, having time off work and some were unable to have children,” said Aimee.

“Endometriosis can only be confirmed with surgery, and the symptoms can be attributed to many different things like apendicitis.”

“This is why it takes so long to diagnose. The average time it takes to diagnose endometriosis is seven years, yet one in 10 women in the UK have the condition.”

Spurred on by all the online stories, Aimee decided she wanted to make a positive difference.

She said: “I have set up a Facebook, Twitter and email account to help raise awareness and offer support to Bassetlaw women with the illness and their families.”

Aimee continued: “Bassetlaw Endometriosis Awareness and Support Team has also been set up with the hope that it will grow into something bigger. It’s an online outlet for local women suffering from endometriosis to speak out, to seek information, just to share their experiences and spread some awareness.”

“It is my aim to organise a coffee morning for women to get together or possibly some kind of event like a child-friendly walk or run etc in the future. I have also registered to complete the Worldwide EndoMarch which is taking place in London on 28th March.”

Endometriosis occurs when tissue that behaves like the lining of the womb is found outside the womb.This causes inflammation of the surrounding organs and often creates lesions and scar tissue which fuse organs together.

Follow BEAST on Twitter @BassetlawEndo or visit https://www.facebook.com/BEAST.Bassetlaw

Endometriosis: ‘I’d be vomiting and passing out with the pain but doctors said I was just attention seeking’
Patricia Murphy
Published 02/03/2015 | 15:32

Noelle would pass out with the pain of her endometriosis.

Noelle Carew was 14 when her periods began to cause her agonising pain. Lasting up to two weeks, the arrival of her period would feature a stream of intense cramps and heavy bleeding often causing her to vomit with pain and regularly pass out.

Noelle’s mother Margaret took her to the family GP in Tipperary where she was assured that her teenager was just suffering from bad period pain. However, watching what her daughter was going through each month Margaret knew that there was a much deeper problem unrecognised by her doctor.

“Each month when I got my period it was always two or three days out of school, bleeding heavy, in intense pain where I would literally be rolling around the bed begging my mother or father to help me,” said Noelle.

Frustrated with the situation and sick of seeing her child in such distress each month, Noelle’s mother sought a second opinion and brought the teenager to another GP.

Having met an Endometriosis sufferer at work, Margaret suggested that perhaps this is what Noelle had but the idea was shot down by the doctor who suggested that Noelle was over-exaggerating her symptoms.

Noelle pictured at age 12.

“When we sought a second opinion the doctor told me I was attention seeking and asked my mother if there was something going on at home that would have me act out in this way.

“I’ve had doctors tell me I was purposely not relaxing my muscles to make the pain worse, that I was faking it and making up how painful my periods were,” said Noelle.

Eventually after years of suffering Noelle, now 37, booked an appointment with a gynaecologist who believed with almost certainty that she had Endometriosis. Noelle underwent a laparoscopy and was diagnosed with stage 4 Endometriosis.

“Finally at the age of 18 someone believed me and we also had a name for this thing that had taken over my life,” said Noelle.

Endometriosis is a painful disorder in which the tissue that normally grows inside a woman’s uterus grows outside the womb. One in ten women in Ireland suffers from the disorder in varying degrees but painful menstruation, pelvic pain, painful intercourse and infertility are the “classic” symptoms, according to the Endometriosis Association of Ireland.

For Noelle, the disorder has deeply impacted almost every decision she has made since her early teens.

“I used to be very sporty and loved camogie. I even played on the boys’ team but I had to give all of that up because I was so embarrassed in the changing rooms and was too unwell to play a lot of the time,” said Noelle.

“I could never do normal things and I felt like I could not be myself. I could never stay away over with friends or go away on trips because I often had to come home.

“I never had boyfriends in my twenties. It was just too embarrassing to have to say to men ‘I have really heavy periods and sex can be really painful for me’.

“Endometriosis has affected every aspect of my life even some of my friendships. Sometimes I felt so isolated. None of my friends had pains with their periods so they didn’t understand. And nobody would ever talk to me about it because they were too embarrassed,” said Noelle.

Noelle has a degree in Childhood and Education but can no longer work in the area as it is too strenuous.

“I love children and have a degree in Childhood and Education but after my big surgery, I wasn’t able to do that anymore.

“I retrained and studied secretarial business studies but right now I’m not working because I’m not able to sit down for long periods of time as I have wicked back pain and often feel nauseous,” she said.

Since her diagnosis almost 20 years ago, Noelle, from Co. Tipperary, has been through 13 surgeries all of which were related to Endometriosis. Doctors placed Noelle into pseudo-menopause at several points throughout her teens, twenties and thirties with drugs like Danazol, in attempts to relieve her debilitating symptoms which played havoc with her emotions especially at defining points like during university.

In 2008 Noelle met her husband Shane and quickly fell in love. The pair were engaged within seven months and decided to try for a baby soon afterwards.

Noelle and Shane on their wedding day in 2011.

“From when I was diagnosed, my doctors used to always ask me if I had a boyfriend because with Endometriosis it’s best to try and begin a family as soon as possible.

“When I met my husband it took me a while to be 100 percent honest with him after two or three months we had fallen in love and Endometriosis just became something that was part of our lives.”

The couple have been trying to start a family for six years but Noelle’s Endometriosis has made their attempts so much more difficult.

“Shane and I have been through two rounds of IUI (Intrauterine Insemination) and have been through three IVF cycles.”

“We had our first round of IUI treatment in 2009 but it was unsuccessful. So we tried another cycle but during an ultra sound a large cyst was found on my left ovary so I had another surgery to remove this and remove some more adhesions.

After this surgery Noelle fell pregnant naturally but unfortunately she miscarried at twelve weeks.

“We were devastated. I felt like this couldn’t be happening to me after all I had been through it seemed so unfair,” she said.

Noelle fell pregnant once again after a second round of IVF but tragically began to bleed after five weeks and miscarried.

Noelle had both of her fallopian tubes removed in January 2014 as it was discovered that they were filling with a fluid called hydrosalpinx, which may have been contributing to her miscarriages.

For a third time, she fell pregnant but miscarried again in April 2014.

“All I’ve ever wanted was to be a mother. I have an appointment with my doctor in Galway this March where we will discuss whether or not we should try IVF again or if it is time to look at other options available to us,” said Noelle.

As well as her loving husband and family, Noelle has found a great support from a Facebook group where she has communicated with other women who are going through the same thing.

“I joined the Endometriosis Association of Ireland and got onto their Facebook group and started chatting to women who are going through the same thing as I am.

“It is such a lovely thing to know that you aren’t alone in this and a lot of people don’t understand when they don’t have Endometriosis.”

“I feel really passionately about raising awareness.

“Since I was diagnosed with Endometriosis I have suffered with depression and felt alone. My advice to any woman who has the symptoms of Endometriosis is to remember there is help out there. Trust what your body tells you. Don’t ever give up. If your doctor isn’t helpful find another one.

“Endometriosis is such an awful, awful disease that has affected my life in so many ways and affects so many women. I’m so fortunate to have always had such great support from my mum. She is my rock. By doing this article if I can help just one girl it will be worth it because you are not alone,” said Noelle.

For more information and support visit www.endometriosis.ie

EXCLUSIVE: As Jennifer Aniston stars in a new film about the daily agony of living in pain, one father’s heartbreaking story of how the loneliness and despair it causes drove his daughter to suicide.

My daughter’s relentless pain was so bad she committed suicide
By ANNA HODGEKISS FOR MAILONLINE
PUBLISHED: 12:12 EST, 22 February 2015 | UPDATED: 10:22 EST, 23 February 2015

Julia Kelly spent most of her short life racked by pain.

Plagued by excruciating gynaecological complaints from the age of 11, she went on to suffer daily agony from two car accidents – neither of which were her fault.

After the first, 10 years ago, she battled to retain a sense of normality.

But over time, with her body giving up, she struggled to come to terms with how the pain so drastically altered the course of her life.

At 37, when most women dream of having a family, Julia was so immobile she couldn’t tie her own shoelaces.

I AM CHRONIC PAIN 
Before her death, Julia helped produce a short, but poignant film to help educate others about the real effect of living with chronic pain. Her father David believes the words are a stark reminder of how the condition affects sufferers.

You can’t see me,

You probably do not even know I exist,

I am chronic pain,

I wreck lives,

I destroy happiness,

I tear relationships apart, shatter dreams,

I stop careers in their tracks,

I may even take your home and empty your bank account,

And let’s not forget to mention the daily, physical pain I will cause you,

I can appear at any time,

And I do not discriminate,

Beware – one day I may even take your life away.

Forced to move home to her parents and quit her beloved job, the lack of a ‘proper life’ and independence became unbearable for the sociable and extremely intelligent charity worker.

But it was the second car accident two years ago, which left her fearing incontinence, that was the final straw.

Three months ago, on November 2, Julia ended her life aged just 39, no longer able to bear her constant suffering.

She left no note, but her family are in no doubt the agony she endured for several years – and the loneliness and despair it brought – are to blame.

Her father David, 72, is now running the pain charity she founded to help others battling the condition to realise they are not alone.

He hopes that by doing so, others may be spared the tragedy and heartache his family has endured.

More than 1.5 billion people worldwide – or around one in seven of us – suffer from chronic pain, according to the American Academy of Pain Medication.

Julia, with her father, David.

The condition is defined as pain that lasts as three or more months.

Despite these overwhelming statistics, chronic pain remains one of the most poorly understood and underfunded services in global healthcare.

As a result, trying to get effective treatment can be lengthy and frustrating, leaving those affected feeling helpless and in some cases, suicidal.

But now, thanks to a new Hollywood film starring Jennifer Aniston, it has been thrust into the limelight – to the relief of families such as the Kellys, who hope it will raise awareness of the brutal reality of living and caring for someone with the condition.

In the film, Aniston plays Claire Bennett, who suffers horrific chronic pain following a car accident.

Her physical pain is evident in the scars that line her body and the way she carries herself, wincing with each tentative step.

Claire is no good at hiding her emotional pain either. Blunt to the point of searing insult, anger seethes out of her with nearly every interaction.

She has driven away her husband and her friends – and even her chronic-pain support group has kicked her out.

It is only the suicide of Nina, one of her fellow chronic-pain group members, that triggers her to confront her life with pain – and how to deal with it head on.

The film spares none of the misery that sufferers deal with on a daily basis: the agony of taking just a few steps, the torture of sitting in a car as it goes over a speed bump, the relentless insomnia – and the in some cases, the anger towards the person or situation that caused the pain.

Tragically for Julia, pain won – but her family are determined to help others suffering with chronic pain avoid the same fate.

For David and his wife Valerie, 74, the film was particularly poignant and raw as they attended a screening just three months to the day that Julia had taken her own life.

‘Ironically, our train trip from Northamptonshire to London was held up for 30 minutes due to someone jumping off a bridge onto the railway line,’ David told MailOnline.

‘With chronic pain – or a mental health issue – it’s so important to realise you are not alone.

‘There are people who have trodden this path before and can help you. And I realise now that unless you have been through it, you will never understand it.

‘The cruel fact is that this condition affects one in seven people and has a massive impact on social structure, working environment, education and employment.

‘Teachers and employers, for example, are often not aware of chronic pain and think sufferers are perhaps lazy, when actually the person is suffering very debilitating pain that no one can see.

‘Whereas you can see a broken arm or a wheelchair, you can’t see chronic pain.’ 

Julia celebrating her 21st birthday with Brett. She suffered from severe endometriosis from the age of 16

David and Valerie feel that in Claire, Jennifer Aniston played a powerfully moving character.

‘We saw a very close resemblance to Julia so often,’ he said. ‘The way her body moved, the way she walked – every movement was so evidently painful.

‘Travelling in a vehicle was also such agony, her facial expressions showed the pain all so often.’

And as also becomes apparent in the film, life with chronic pain can be incredibly lonely.

‘The life you had – work, going out with friends – has gone,’ said David, a retired commercial manager.

‘But everyone else continues with their life. They work all week, see their partners on the weekend.

‘Julia didn’t have that – and unless you go through that bereavement process properly for the life you once had – and come to terms with the fact it’s gone – it will slowly eat away at you until you crack.

‘Whenever I see a young girl, probably married, pushing a pushchair down the street, I feel sad that Julia never had that.

‘A few times, she said she wished she had never been born, that she’d never had a good life because of the pain.

Julia and her mother, Valerie

Diagnosed with severe endometriosis at 16 after suffering crippling period pains, Julia was given hormonal medication so powerful it induced a ‘mock menopause’.

David said: ‘Because of her terrible endometriosis when she was a teenager, she often missed out on fun nights out with her friends, relationships were impossible and the pain impacted hugely upon her education.’

Despite missing huge chunks of her education because of it, she was overjoyed to secure a job with a local charity at the age of 28.

Writing on the charity’s website before her death, Julia said: ‘I was so proud to finally be working full time and enjoying life, my symptoms became manageable and I returned to work and got my very own first home.’ 

But in July 2005 she was involved in a car accident – and, unbeknown to her at this point, she would be in pain every day for the rest of her life.

While for the first few years, the pain was manageable, by May 2010, Julia was in agony.

‘She said the pain was like red hot pokers in her leg,’ said David. ‘It hurt to stand, it hurt to sit – she needed cushions for everything.’

Unable to stand, she could only crawl around her flat on her hands and knees.

By the July, the pain forced Julia to abandon life as she knew it. 

‘She had to move home – and I don’t think she ever came to terms with it – it was like a bereavement,’ said David.

MY LIFE FELT AS THOUGH IT WAS SPIRALLING OUT OF CONTROL 
By May 2010, five years after her first car accident, Julia’s pain was so bad she was unable to stand – and she could only move around her flat by crawling on her hands and knees.

By the July, it forced her to abandon life as she knew it.

Writing for her charity website in 2012, she said: ‘Life became a blur of hospital appointments and I was put on heavy medication to help with the pain, including tramadol, cocodamol, ibuprofen, diazepam, amitriptyline and gabapentin.

‘My life felt as though it was spiralling completely out of control, the sheer pain and meds meant I could no longer drive, so I became totally reliant upon my recently retired parents to ferry me to my never ending stream of medical appointments.

‘I could no longer manage living on my own so once more, my loving parents came to the rescue, took me in and became my carers.

‘Not being able to work meant having to give up the home I’d worked so hard for, and my much loved and taken for granted independence evaporated right there and then. I felt like I was losing my identity.

‘I felt totally useless, a complete burden on everyone.

‘Feelings of hopelessness, loneliness and despair prevailed.

‘Despite a loving family, great friends and my faithful cat Milly, I felt totally useless, a complete burden on everyone and, quite frankly, an emotional basket case.

‘Night times were the worst – they seemed so long and I couldn’t sleep for the pain.

‘I was lucky if I got a couple of hours sleep so it wasn’t long before the effects of sleep deprivation kicked in, and I found myself turning into a person I hardly recognised anymore, so irritable and angry.’

After a wealth of tests, which revealed toxic liquid had been passing from one of the discs in her spine onto the nerve roots causing pain, she underwent surgery to remove two discs.

Along the way, she found several coping strategies including psychology sessions, hypnotherapy, yoga, meditation and osteopathy.

Despite the pain Julia retained a glimmer of hope that one day, her life might be able to return to some kind of normality.

But in a cruel twist of fate, lightening did strike twice.

In March 2013, Julia was involved in a second car accident when, once again, someone drove into her car.

Her injuries meant she needed major surgery to re-fuse her lower spine.

‘After this accident, she was in absolute pain all of the time,’ said David.

‘From then, up to her death in November 2014, Julia had 72 appointments with a mixture of consultants, doctors, physiotherapists and pain clinics.

‘In terms of her quality of life, she was existing, not living.

‘She couldn’t even lace her shoes up or get dressed without help and some of the strong pain medication made her incoherent.

‘There were no holidays. Her days consisted of being showered by lunchtime, a bit of charity work and then us taking her to the shops before making her dinner.’

Julia was also left with problems with her bowel and feared she may become reliant on a colostomy bag.

‘It was the bowel problems that were the last straw,’ said David. ‘She felt if she lost her dignity, she would have lost everything. The carpet was pulled from under her.

(Click here to see video titled, “Julia’s story: her experience with Chronic Pain before her death”).

‘Until the second accident, she felt she could just about keep up with life, perhaps get a part-time job, but these dreams were then destroyed.’

On top of this, there was the stress of claiming benefits and work tribunals.

Despite overwhelming medical evidence to support her claim, Julia was forced to endure three tribunals – ordeals which only hampered her recovery, her family believes.

The cruel irony was that while Julia was in fact desperate to work, she was made to feel she was exaggerating the pain she was in.

‘People just don’t understand how crippling it can be,’ said David.

Now, three months after Julia’s death and with her inquest next month, he believes he missed signs that his daughter was severely depressed.

‘When you have the benefit of hindsight, it is so easy,’ he said.

‘We always supported Julia, cared for her and helped her financially. But she was very good at hiding things from us.

‘We could see she was in pain, she couldn’t sleep and how each step was excruciatingly painful for her, but we did not understand the mental anguish she was going through.

‘Looking back, it’s so stupidly, blatantly obvious that she was depressed. It didn’t cross our minds – and she kept it from us.

‘We later found out she’d told a friend it would destroy us if we knew. We are getting on a bit and I fear Julia felt – wrongly – she would become a burden to us.’

Just a month before her death, he and Julia went away together for a few days.

‘I felt she was trying to build up the courage to tell me something, but she just couldn’t get the words out,’ said David.

‘The next month, she had gone.’

Does he wish he had done more?

‘Looking back, you can beat yourself up – my wife and I always wonder if we could have done more,’ he said.

‘But in real terms, we couldn’t take the pain away and we couldn’t stop it getting any worse. We couldn’t help the loneliness.’

However he believes Julia’s decision to end her life was ‘totally on the spur of the moment’.

‘On the Tuesday before she died, Valerie had dinner with her and she seemed fine,’ said David.

‘But she had been hounded by the Department for Work and Pensions over some payments she owed and I suppose, with the pain, her patience finally exploded.’

The family first became aware something was wrong when Julia failed to arrive for Sunday dinner.

‘She’d been back at her own flat that we’d kept paying for so she had somewhere to go for space,’ explained David. ‘Although most of the time she lived with us, as she was so immobile.’

At 6.30pm, two hours after Julia was due to arrive back, both David and his son Brett, 42, sent her a text.

When they received no reply, a call to a friend of Julia’s who lived nearby revealed her car was there and the lights in the flat were on.

Feeling uneasy, David and Brett drove the 20 minutes to Julia’s flat.

‘We went around the back of the house and through the blind we could see her lying on the settee, not moving,’ David said. 

‘Brett could see what had happened. We called the police.’

In the horrific three months since that day, David has focused his energy on building up the charity Julia founded, A Way With Pain.

‘In 2012, she came to me saying she wanted to do something proactive, explaining there really wasn’t anything out there to help people like her,’ he said.

‘The charity was started to create awareness of chronic pain and support those affected – and I became involved to support her.

‘Now I’m keeping going as a legacy to Julia.

‘And while I find I can lose myself in the charity work, which helps with the grief, my poor wife is not so fortunate.’

Going forward, the family hopes the website will bring solace to others living with – or caring for someone with – chronic pain.

‘It’s a place where people can visit, find comfort and share their experiences on the forum, if they so wish,’ said David.

‘Hopefully it can eliminate some of the fear, frustration, loneliness and isolation that can be felt when living and dealing with chronic pain on a daily basis.’