Caitlin Gallagher
April 26, 2018 12:43 pm
maroke via Getty Images

Endometriosis Awareness Month may have ended in March, but if you live with this condition, then you know how the physical and mental pain you experience rarely goes away. Endometriosis can be extremely debilitating, but it’s also a disease that women often struggle to get diagnosed correctly. With approximately 176 million women around the world living with endometriosis, you’d think it would be something that could easily be detected by physicians. But unfortunately, that’s often not the case. And the consequences of not getting endometriosis diagnosed can last a lifetime.

Endometriosis is worth discussing year round — not just in March — so we spoke with nine women whose doctors ignored their endometriosis symptoms to show just how desperately more awareness about this disease is needed in the medical field and beyond.

Endometriosis is a disorder where tissue that’s similar to the tissue that typically lines your uterus is found in other parts of the body; according to the Mayo Clinic, the tissue is commonly found in the ovaries, fallopian tubes, and the tissue lining your pelvis. Endo can have a variety of symptoms, and that’s one reason that it can be difficult to diagnose. But there’s also a lack of understanding about this disease. As Dr. Eric S. Surrey wrote for Healthy Women:

Still, doctors should never disregard a woman’s pain or symptoms — even if there are differences in how the condition manifests from individual to individual.

While many people have had good experiences with obstetrician-gynecologists and other doctors, below are some examples of women who felt like they were not listened to by their health professionals. They were kind enough to share their stories in an effort to spread more awareness about endometriosis and to help others who have had similar experiences.

1Keep trying

“In regards to endo pain, my first three gynecologists (women, if it matters) told me that painful periods were just a normal part of life. I wasn’t taken seriously until I was hospitalized twice for abdominal pain. My (male, if it matters) gastroenterologist was the first doctor who said, ‘Let’s try to find the cause of your heavy painful periods.’ He referred me to a male gynecologist who also took me seriously and scheduled me for a laparoscopy. Don’t settle for a life of pain. There are people out there who will believe you. Keep trying.”

— Katherine, 26, New York

2Fifteen years to get diagnosed

“Why does it take so long to be diagnosed? My mother had endometriosis and ovarian cancer. Even with my family history, it should have been important enough to discuss. I had painful, heavy, clotty periods since my first period. I had painful ovulation. I also had three miscarriages. Even after three miscarriages, it was still not important? Was my infertility not important? With debilitating pelvic pain leaving me unable to walk, I was told it was constipation and in my head. If I had the pain six months later, maybe it’ll be discussed?

I found a specialist who cared and believed me. Got surgery and endo excised, and officially diagnosed. Fifteen years to get diagnosed! After being led to believe everything was in my head! I’m on the road to being pain-free and a chance to carry to full term.”

— Rebecca, 29, Wisconsin

3Found a diagnosis, but the mental damage was already done

“I had all of the classic signs and symptoms for years, but I was managing fine so no one really cared much until it got severe. After three months straight of constant severe abdominal pain, I landed myself in a children’s hospital where I thought I would finally get answers. As it turns out, I was very wrong.

Once my doctor realized it wasn’t a kidney stone or constipation causing my pain, he decided there was no other possible cause and started paging the psych department to come talk to me. He also ended all pain relief — the reason I was in the hospital. I could only have ibuprofen or Tylenol, and I wasn’t allowed to go home.

I was stuck there in severe pain for five days before my mom finally broke me out and the entire time I felt absolutely insane. Finally, I lost it and told my doctor that I’d rather be in pain at home if he wasn’t going to help me and he ‘apologized’ that psych didn’t help me.

Two months later I found a diagnosis, but the mental damage was already done. To this day, I worry that all doctors think that I’m crazy. Currently, I am coping well and have had two surgeries in a year to treat it. Endometriosis is so much more serious than doctors think it is.”

— Mackenzie, 18, California

4What am I going to do to stop the pain?

“I’ve always had ovulation pain, mostly in my lower right iliac region and the occasional cramping with periods, rarely bad. At the end of 2015, I got regular, stronger pain and went to my regular physician to get checked out; they found I had PCOS [polycystic ovary syndrome].

February 2017, I got that sharp constant pain in my regular spot, I thought, ‘Oh wow, it must be a large cyst bursting.’ But the pain continued for two weeks nonstop. I went to see my regular doctor, but he was on holidays, so I saw another at the clinic — who was female, by the way — and she physically examined me, ordered urine sample, and blood [tests], and ultrasounds. She also gave me tramadol to help because regular NSAIDs weren’t working. The internal ultrasound also hurt like heck and it never did before.

Meanwhile, the pain started to appear in other spots too — behind my navel, along the sides of my abdomen, inside my vagina. Sitting down I got sharp stabbing pains, and so on. My stomach also distended.

My regular doctor was back and checked my results, nothing abnormal in my urine or blood, physically examined me and apparently there was no notable change of my innards via the ultrasound.

I blew up: ‘What am I going to do to stop the pain?’ He shrugged his shoulders and said it could be IBS, and to change my diet and exercise more. He then looked at my file and saw the doctor before him had prescribed me tramadol. He then told me to not take it because it would interfere with my regular meds (it didn’t, by the way, and I specifically asked her if it would interact with my meds) and to take paracetamol for the pain.

I had a little bit of the tramadol left, always used it sparingly, but then over the next three months, the constant pain had intensified to the point where tramadol didn’t work and my sleep was broken from repeated rude awakenings of pain. I also seemed to have missed nearly four periods. I had enough. I went back and specifically saw the female doctor, told her what had happened before, how things are now, and that I am at physical and mental breaking point. I started to fear I had ovarian cancer. She said that it sounds like I might have endometriosis.

I found a private OB/GYN. He was brilliant. He did a quick abdominal and internal ultrasound in his office and saw there was nothing else going on in there, and saw how I yowled like I was in labor when he put the transducer inside my vagina. When I stood up, I nearly collapsed. We discussed surgery options and [the surgery] happened in July 2017.

He found I had stage three endo. And though he couldn’t take out all the spots and the adhesions, it’s made a world of difference.”

— Beth, 32, Australia

5Not taking my symptoms seriously has led me to distrust doctors

“I didn’t actually have a doctor mention the term endometriosis until I had been suffering for four years, and I wasn’t able to find an OB/GYN who would do the diagnostic lap until I was 34 after suffering for 20 years.

I had many OB/GYNs tell me that it was probably endometriosis, but that confirming it wasn’t necessary. I actually had a few doctors tell me that it was better to manage it with pain meds and hormones; one accused me of trying to get free fertility treatment (because I list infertility as one of my symptoms), and several claimed that my pain would get worse if they did surgery.

The doctor I saw prior to the one who agreed to diagnostic surgery seriously wanted to put me on Lupron for six months to a year. Lupron stops estrogen production and causes menopausal symptoms. When I reminded him that I was trying to get pregnant, and that I’m already 34, he seemed unconcerned.

No doctor has mentioned the increased risk of heart attack that comes with endometriosis. All doctors warned me that there is the possibility of not finding endometriosis during surgery, but only one agreed with me that this could also be helpful, because then we’d know that the pain was being caused by something else.

I feel like doctors not taking my symptoms seriously has led me to distrust doctors. I also firmly believe not properly dealing with it is why I am now struggling to get pregnant.”

— Nicole, 34, California

6I essentially treat myself now

“My symptoms began at age 11. I remember laying in bed with cramps that felt like someone was repeatedly stabbing me and twisting the knife. It was never a case of IF I might get blood on my bedsheets or clothing during my period, it was just inevitable. No pad could absorb enough blood to keep up with it. My symptoms were always played down and people behaved as though I were simply just being dramatic, so I eventually thought perhaps I was.

At age 17, an aunt with endometriosis saw me faint from menstrual pain and blood loss. She suggested I get checked for it. At age 19, I went to a female OB/GYN. I told her my symptoms and that I thought I had endometriosis. She said I probably didn’t, did no testing, no follow-up.

By age 20, I was no longer sick just before or during my period, I was in constant horrific daily pain that required narcotics to allow me to function normally. I was told I had fibromyalgia. There were no tests run, not even tests to rule out autoimmune issues

For the next 14 years I ran towards a better future, then I walked, then I crawled, then I stopped altogether. I married a compassionate hero of a man who defied logic and loved me anyway. We soon decided to start a family.

My miracle of a child was delivered safely, but that marked another drastic downturn in my health. Four miscarriages and two-and-a-half years of constant, daily pain later, I was able to have a second miracle, but not without a very difficult pregnancy. We were in and out of the hospital, and I almost lost her multiple times. Still, no one had mentioned endometriosis or any other reason I was having this abdominal pain.

My husband took me to doctor after doctor. Two years after my youngest child’s birth, my stomach was still bloated to the point I looked seven months pregnant. By this point, I was completely crippled and we were going to every specialist we could find. I had chronic infections in multiple parts of my body.

Finally, while in the office of an OB/GYN, he pointed to my left ovary and said, ‘I want to talk about that pain now.’ Within a month I had had a laparoscopy to confirm endometriosis. He also found that I had adenomyosis and my uterus was so damaged and infested with the lesions from it that it was unable to shrink down after the birth of my second child.

When he gave me a list of potential treatments, I knew he was vastly out of his depth. I decided to find a better-trained surgeon before making a choice. Six weeks later, I received a hysterectomy (uterus removed to treat adenomyosis and cervix removed), salpingo-oophorectomy (left ovary and fallopian tubes), appendectomy (also eaten up with endometriosis), and ablation. While in surgery, the surgeon also found significant evidence of pelvic congestion syndrome resulting from the decades of damage.

Currently, the endometriosis has spread throughout my abdomen, down into my digestive and urinary system and has gone up onto my diaphragm. We spoke to a well-known endometriosis specialist, but because of the extent of the disease and the organs it has spread into, the surgery would cost a quarter million dollars out-of-pocket, as insurance companies do not see excision surgery as necessary.

After decades of asking for help and receiving ever-increasing doses of narcotics and anti-depressants instead of a correct diagnosis, I found my digestive system damaged to the point I cannot currently take traditional pain medication. I essentially treat myself now, because my anxiety upon walking into a doctor’s office is almost as bad as the pain itself. Twenty-three years of being told I was crazy and dramatic left me with an unhealthy distrust of the very people whose job it was to heal me in the first place.”

— Mandy, 35, Arkansas

7I still suffer because the disease had lived inside of me for so long

“I started experiencing symptoms of endometriosis in high school; I would vomit when I got my period from the pain. I got shuffled back and forth from doctor to doctor and they tested me for IBS, gastrointestinal issues, and even tested me for AIDS even though I was a virgin at the time. It wasn’t until I actually physically could not walk anymore that a doctor decided to do a laparoscopy when I was 28 years old. I was diagnosed with stage four endometriosis after that surgery.

I do feel if my concerns were taken into consideration when I was younger and had been diagnosed earlier then the disease may not have been so progressive inside of me. I maintained [some] years by having a few more surgeries and staying on continuous birth control. But I started bleeding through the birth control, and that’s when a hysterectomy was recommended to me. I was 36 years old. I went with the total hysterectomy, removing my ovaries, uterus, and cervix. The pain continued and my doctor was so perplexed and was pretty dismissive.

About eight months later, an ER doctor did an MRI on me and found that I had something called ovarian remnant syndrome, because all of the tissue was not removed during my hysterectomy.

I brought my case to two doctors in New Jersey, and neither of them would touch me. And then I heard about the Center for Endometriosis in Georgia and I mailed them my records, and five months later, I boarded a plane to have surgery in Georgia. That doctor saved my life.

I still suffer from horrible bloating, severe bladder issues, and intestinal issues because the disease had lived inside of me for so long.”

— Kerri, 41, New Jersey

8“I really have no faith left in doctors”

“I first began experiencing severe abdominal cramps when I was 15, but then when my periods started shortly before turning 16 it was just put down to being [menstrual pain]. My mum has battled periods her entire life … and her mum sadly passed away before I was born due to complications with a hysterectomy she had hoping to rid her of period pain. So I guess endo probably runs in my family, we had just never heard of the word until I was 23 years old.

For years I had been back and forth to the doctor complaining of cramps all month round; pain in my back, ribs, and legs, bloating — all classic endometriosis symptoms — and they were very aware of my family history, so I have no idea why it took seven agonizing years before a general practitioner finally referred me for a laparoscopy. The appointment took forever and it was changed a few times, which really had a negative impact on my already poor mental health, but eventually I had the [surgery] and they diagnosed me with endo for sure.

I thought getting a diagnosis would open so many doors to help with pain management, but it hasn’t. I’ve had one GP who couldn’t even pronounce endometriosis! I have an appointment with my specialist next month to discuss hormone therapies. I wish I could be hopeful that they’re going to fix me, but I really have no faith left in doctors. I’m getting to the end of my rope, so I focus my energy into educating others about the disease to help raise awareness — even if we can’t ever find a cure, we need to at least reach a point where 1 in 10 women aren’t forced to live an alienating life of pain.”

— Jade, 26, Scotland

9The biggest effect has been on my mental health

“When I was in high school I felt sick all the time. I knew something was wrong with me and it really stressed me out. I got my period every second week — it wasn’t a normal period, it was painful and uncomfortable. I was tired, sick, and grumpy all the time. I am very thankful that my mum agreed and believed me that there was something wrong.

When I say I was sick, at one point I was convinced I had leukemia or some other well-known serious illness. I went to doctor after doctor after doctor, most of them telling me there was nothing wrong. I changed pills like 15 times. One doctor, I will never forget — I was 16, I know I was not sexually active at the time — this female doctor was very insistent that I needed to tell her I was sexually active so she could help me. I wasn’t, she thought I was lying, and she treated me like I was a liar. She said to me, ‘Well, you need to tell me that you are because you’re either pregnant or have an STD.’ I walked out crying. To be continuously treated like I was a lying, bratty high school girl is an absolute flaw in our medical system and the education of endometriosis.

My mum found a doctor who was helpful, she was incredibly understanding. This doctor for me was a lifesaver at the time. I did not have any cancers or any other common illnesses. She attempted to assist in reducing the regular periods I was having. I tried every type of solution you could find, that was JUST to slow my period. Still no word of endometriosis.

When I was 17, I moved away to go to university. By this point, I had pretty much learned to live with being sick regularly, weird unexplained bruising, massive mood swings, and all the other joys. I still had no answers and just assumed I had bad periods. I certainly had still never heard of endometriosis.

One morning, I went to the toilet and was vomiting, I was so sick and in pain, but I didn’t want to wake or trouble anyone for ‘period pain.’ My housemates finally woke and I was passed out in the [bathroom] with blood everywhere. We went to the doctors. The doctor sent me straight to emergency. I went in and they basically told me my appendix was about to burst OR I had an ectopic pregnancy. The doctors ruled out the ectopic pregnancy and decided it was my appendix.

After surgery for my emergency appendix, I remember the doctor said, ‘Your appendix wasn’t 100% so we took it out anyway, but that isn’t your issue. You have endometriosis, here is a referral to a gynecologist.’ And that was that. No information or anything, I couldn’t even Google it because I didn’t hear the name properly.

The year or so that followed, I became a pretty stressed and grumpy person. Endo was destroying my mental health and I had no idea. The gyno basically told me I couldn’t have it that bad as I was only 18. I also felt like he didn’t believe me and that my stories were exaggerated. He was meant to be a gynecologist who understood this stuff, but I didn’t feel any sympathy or compassion from him. I had surgery, they showed me pictures, and the doctor actually apologized because the endo was quite bad by this point. After this surgery there was nothing put in place to help with endo, I still had no idea how to stop this from growing.

I guess for me the biggest effect has been on my mental health. Having health professionals continually tell you there isn’t anything wrong and it’s in your head, you do get in your head. Being undiagnosed and unwell for so long surrounded by negativity from health professionals, including gynecologists, is a form of trauma.

Endometriosis awareness has been the cure for me — to be able to tell my story, and hear so many other similar stories, really helps. I’m 30 years old trying to make a life for myself, but how will I ever get married, buy a house, or have children when almost all of my money goes to medical bills? These are the things an endo sufferer has to battle with constantly.”

— Hayley, 30, Australia

As with any condition, you have to be an advocate for your own health. But your symptoms shouldn’t be ignored. So if you’re experiencing pain that you think may be due to endometriosis, learn from these women’s experiences. Find a doctor who listens to you and is willing to do what it takes to figure out what’s causing it. Because while you can’t prevent endometriosis, no one should have to live in constant pain.

These interviews have been edited and condensed. Some names have been changed to protect the privacy of individuals.

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