Getting a diagnosis of a chronic disease is life-altering and devastating for anybody who lives through it. But, as roughly 176 million women world-wide have learned, there is something a bit worse: having a chronic illness that nobody really understands – doctors, friends and family, even other people that have it too. This is the reality that women with endometriosis must manage to navigate, and it’s not easy.
Endometriosis is a disease where the lining of the uterus (the endometrium) grows in other parts of the body besides the uterus. It is most commonly found in the pelvic cavity, often on the ovaries, fallopian tubes, and peritoneum, but can also occur in other areas. Some women have it on their bowel, bladder, rectum, diaphragm, appendix, gall bladder, and pelvic wall. There have even been cases where it has been found around the heart and brain.
The Department of Health and Human Services states that about 15 to 20 percent of women in the US have endometriosis, but the number could be higher. It takes an average of eight to 10 years for women to get diagnosed, largely because the only way to get a true diagnosis is through surgery.
It took 21 years for me to find out I had endometriosis, although only three years of actively seeking medical help.
Generally, the only signs of endometriosis are pain and infertility. Painful periods are the signature of the disease. This was my first clue. From the time I was 12 years old, I generally missed two or three days of school a month due to my period. I had heard of cramps, but the pain was more intense than anything I had ever felt. Every month, I vomited and even fainted from the pain. The most memorable time was when I woke up on the restroom floor at my high school with the secretary and principal leaning over me, looking very concerned.
They had to walk me to the office, and it was between classes. A lot of people saw me, and there were whispers among my peers that I was on drugs. I wasn’t. My mom was at work, and the principal, Mr. McShane had to drive me home from school early. I was so embarrassed.
My experience is all too common. Bridget Fritz, of Dublin, also recalls missing school monthly as a young teen.
“I remember getting my first period and knowing in my gut it was not normal, or like how other girls had described,” said Fritz, 24. “Within six months, just after my 13th birthday, I was regularly missing school because of how crippling the pain was.”
For girls like us, most are commonly prescribed birth control pills. I was. They usually reduce the length of the period and the amount of pain that comes along. My doctor told me it would help to “regulate” my cycle. It sounded good to my mother and me, so I started birth control at the tender age of 13.
It helped and I was fine for years. But, there is one downside to this method. Endometriosis is estrogen dependent, meaning that it feeds off the estrogen produced by the ovaries, or, in some cases, estrogen-based birth control pills. So, while it might hide symptoms, the tissue continues to grow over the years, quietly.
I was fine for a long time. I remained on oral contraceptives through my 20’s, only going off them to have my two children, who I was blessed to have with no trouble. I made it to the age of 30 before I started to notice something was not right.
I was working at a job that was very physically strenuous. I worked long hours in very high temperatures and did a lot of heavy lifting. I loved it, though, and I got into the best shape of my life at that time. I felt strong and healthy, until I didn’t.
I started to feel a lot of pain in my abdomen. I had experienced this intermittently through my 20’s and even had a couple CAT scans to investigate, but nothing ever showed up. It became something that I felt every day, and I also began to experience a lot of digestive issues. I started frequently having to run to the restroom during my shift to get sick, and word got around among my boss and coworkers that I may have some kind of drug problem. I could see how. I was sick every day, slow, and in pain. I couldn’t lift heavy things anymore. Eventually, they cut my hours until I didn’t have any, passive-aggressively firing me.
I went to doctors and specialists and they ran the gamut of tests on me. No Chron’s, no Celiac’s, no cancer. I was glad to find out that I wasn’t about to die, but I still felt lousy and had no answers. I went back to college at that time and decided to put my health issues on the back burner. I was certain I must have tweaked some muscle and decided to try yoga and getting into shape. But the pain got worse, and finally I found a doctor who would operate on me laparoscopically to diagnose me.
Still hazy from anesthesia, I awoke to the news that yes, I did have endometriosis, and my uterus had been attached to my bowel by the rogue uterine tissue.
Multiple surgeries are par for the course for many women with endometriosis. Annie Anatalek, of Uniontown endured 13 operations between the ages of 15 and 23 years.
“I was fortunate and diagnosed early because of my Mom [also] having endometriosis,” said Anatalek. She dealt with severe menstrual pain from the age of 11. “I went on the pill around 13 because my periods were awful. At 14, I started to be in a lot of pain and had my appendix removed. After that I continued to be in a lot of pain. Right after I turned 15, I was diagnosed with endometriosis via laparoscopy.”
She had more surgeries to ablate (or burn off) the tissue, but it didn’t help. “I was getting worse after each surgery and not getting better,” Anatalek said. “This is when I started looking for a second opinion.”
Anatalek travelled from Ohio to Atlanta to see a highly recommended specialist who uses a technique called excision to remove endometriosis tissue. Rather than burning the tissue away with ablation, excision removes it from the root and is thought to delay the return of the disease longer than ablation.
However, the majority of women’s regular gynecologists practice ablation, which often leads to repeated visits to the operating room, as Anatalek experienced. There are an estimated 55,000 gynecologists in the US and only about 100 have a track record of being skilled at excision. There is currently no certain test or licensing needed to be a “specialist” and this often leads to women having multiple operations with a doctor who is not experienced enough to do much good. I have heard of women who had over 30 operations in less than two decades.
According to Anatalek, she had “almost a surgery every semester of college.” Aside from the obvious downside to repeated operations, every surgery comes with the risk of infection, adhesions, and scar tissue. Anatalek lost her fallopian tubes after an infection set in, and although her next doctor said her endometriosis is no longer there, she still has severe pain due to scarring and nerve damage from all the surgeries.
“The nerve damage is so intense that I cannot work and I am living at home with my retired parents. I have a Bachelor of Business Administration and I can’t hold a proper job,” she said. “In fact, I have never been able to get an actual job for a career because they see these absences.”
Living with endometriosis is a full-time job for many women, one that doesn’t usually pay a cent. Endometriosis is not recognized as a disability by Social Security at this point in time. This imposes a further burden upon women who suffer with the disease and frequently miss work due to either pain or time off for surgeries.
“Over the years my endometriosis has cost me every job I ever had,” Bridget Fritz said, explaining most employers didn’t understand when she needed a sick day or three every single month. “They do not recognize this disease as anything more than ‘bad cramps’ or ‘lady problems’ that you just have to ‘man up’ about. When you have endometriosis as bad as I have it, you can think of all the career choices in the world, and if it requires showing up at a certain time or being on your feet for any period of time, you can pretty much safely discount you’ll ever be able to pursue that.”
Carrie Burdy, of Pittsburgh, often has had to use a heating pad at her desk to make it through her day at work.
“I am fortunate to work in a family business that is understanding of my disease and gives me freedom to miss work when I am not well or when I am having surgery,” said Burdy, 36. “If I wanted to change jobs, I imagine it would make me very difficult to employ.”
Besides hijacking a woman’s body, education, and career, endometriosis also meddles in women’s relationships. Family, romantic, friends – there is no boundary.
Bridget Fritz has had this problem. “My friendships have suffered a lot, I’ve become somewhat of a recluse because of how poorly I feel most of the time, and I can’t be depended on to make or keep definite plans anymore,” Fritz said. “I’ve had falling outs with friends over having no choice but to cancel plans at the last minute. You find that after a while, people start to distance themselves from you. You become aware through no fault of your own you’re kind of a downer, and some people just don’t get it. I think a chunk of my friends really just think this disease is just bad period cramps and they can’t see the extent of what I’m struggling to overcome.”
Carrie Burdy also has seen the effect of her disease on her marriage and her friendships. “Endo has had a huge impact on my marriage,” she said. “We can’t have children together, being intimate is difficult. It’s also had an impact on my friendships. I’ve missed out on many social functions due to not feeling well enough to attend, and I am excluded from all talk about babies and kids.”
There are medical therapies that are used to try to slow the growth and lessen the pain from endometriosis, but they aren’t great. As stated in an article in the Journal of Medicine and Life published in 2014, “Up to this point, there is no single very successful option for the treatment of endometriosis. Due to the relatively poor efficacy of hormonal therapy for endometriosis, several other experimental therapies are currently undergoing clinical trial.”
There is a wide range of drugs women can try – combined oral contraceptive pills, progesterones, IUD’s, sub-dermal hormone implant devices, hormone shots, androgenic steroids, GnRH agonists, aromatase inhibitors, just to name a couple things. These drugs all serve to suppress ovulation or menstruation or receptive-ness to estrogen, essentially creating a chemical state of pregnancy or menopause. Letrozole, and aromatase inhibitor, is used for endometriosis as well as for breast cancer, which apparently also really likes estrogen. As the Journal of Medicine and Life says, the efficacy of these methods is not high. And, as one could probably imagine, there are many side effects from these medications – loss of bone density (this affects teeth too), mood swings, depression, bone and joint pain, hair loss, loss of sex drive, weight gain, just to name a few things. Many drugs only work while the patient is on them, and some, like Lupron, are so harsh, they can only be taken for short periods of time. Some of the side effects never go away. In the endometriosis support groups online, there are several women who talk about suffering from permanent bone and joint pain after taking Lupron for 3-6 months. Early onset osteoporosis is common in women who take many of the medications.
As many other women do, Carrie Burdy ended up having a hysterectomy to try and relieve her pain. Sometimes this does “cure” women, but there is also a good chance that the endometriosis will persist, especially if there is any left behind on tissue after the surgery. So, even this is not a guarantee.
Despite being one of the most common gynecologic issues affecting women today, there is frankly not a lot known about endometriosis– how women end up with it or why or how to treat it. It’s disheartening. As I spent several days combing medical journals and government websites for background material to write this article, I was wearied by seeing the words “poorly understood” repeatedly. The most accepted theory of the mechanism of endometriosis is called “Sampson’s Theory” and is over 100 years old.
Sampson felt it was likely that women experienced “retrograde menstruation” where they bled back into their abdominal cavity, which caused implants of tissue to grow outside the uterus.
However, there is evidence that Sampson has it wrong. In an editorial in the journal of Gynecologic and Obstetric Observation, Editor-in-Chief T. M. D’Hooghe presents strong evidence that this theory is untrue and states that most post-surgical recurrences are merely due to remaining tissue that the surgeon did not find or remove.
There have also been about 10 cases of endometriosis in males who were being treated with estrogen for prostate cancer, and the hormones caused implants to grow. Cases like these indicate the endometriosis may be the result of the “skin” cells on organs being affected by hormonal factors and differentiating into uterine tissue. However, the jury is still out, and the uncertainty remains.
Along with Irritable Bowel Syndrome, Interstitial Cystitis (a disease that affects the bladder lining), and the chronic pain and fatigue, depression and anxiety are often the companions of endometriosis. The combination of hormone imbalances, pain, limitations in life, uncertainty about the future, and not being understood by others is a perfect storm for depression and anxiety. It’s very difficult to spend years trying to find a doctor who can help you or even believe you. Most of my friends with the disease cannot get pain medicine without a lot of difficulty. We are frequently treated like drug-seeking pill junkies. In the online support groups I have joined, I have seen several posts about other group members who want to or have committed suicide. It is, from what I can gather, the most common cause of death in women with endometriosis, and it’s heartbreaking and unnecessary.
As I face another surgery in the upcoming weeks, I am trying to put my mind on a positive path. I am going to have faith and hope that after this doctor operates (I found one about 2 hours away that does excision), I will get some of my life back. I have been unwell for about 4 years now and this is my second surgery since August of last year. I try not to let my health issues overtake my life, but sometimes it can’t be helped. Sometimes I forget what it’s like to not be in pain, to be honest. I wonder if it would be weird to me for it to end – good weird, though.
Before I got my diagnosis, I had heard of endometriosis but never knew what it was. I awoke from my surgery last August, one day shy of my 34th birthday, and learned that this weird disease was what I had. In the months since, as I have tried to learn more about endometriosis, it has boggled me that this illness is fairly common but remains such an enigma. I moved from feeling sorry for myself to feeling compassionate for everyone who suffers with this debilitating illness, as well as anger about the lack of support and help.
Endometriosis is a social justice issue. In the years when women are working on education, careers, and families, this disease can stop them from reaching their goals. It’s time to end the stigma of discussing periods and the tendency to minimize the pain as “normal period pain.” I truly hope to see changes in my lifetime – better research that leads to more effective diagnosis and treatment, and more understanding and empathy towards women suffering from this disease.
Bridget Fritz agrees. “Why are women being left to suffer? Why are women being told for years that it’s all in our heads?” she asked.
“I wish people in general would advocate for this disease and demand reform, demand a change in the education of doctors, demand more surgeons be trained and provided for this disease and for those surgeons to be affordable and available in every country,” Fritz said. “If you ask me, this disease has deep-seated sexism written all over it. Our society has been taught that it’s okay and normal for women to suffer through their periods and childbirth- that it’s just a part of who we are, and it’s not right. The commonly held theory about endometriosis is over 100 years old, and has since long been proven to be wrong- yet it’s still taught in medical schools to this day, and it’s largely what’s holding proper care and treatment back. It’s what our doctors are basing their ineffective treatments off of, and when they fail, they blame us.”