Women Reveal How They Were First Diagnosed With Endometriosis

Endometriosis is a condition that affects 1 in 10 women during their reproductive years. While its a condition that is not always spoken about, those who do suffer from it live through painful life experiences. The symptoms of endometriosis include painful periods, painful ovulation, pain during or after sexual intercourse, heavy bleeding, chronic pelvic pain, fatigue, and even infertility. While it may be hard to talk about and/or discuss, some brave women online have been kind enough to open up about how they were first diagnosed with endometriosis.

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1.

I never got the typical symptoms they tell you to watch out for (insane bleeding, unable to move because of the pain etc.) so I never thought much of it, I just kept going back to the doctor’s for the individual symptoms I was experiencing. I would be going about my day and suddenly crippled by a sharp pain in my abdomen, or have a long sustained cramp all day because of the tight jeans I would be wearing which were fine the day before and sex was almost impossible without getting some weird symptom like bleeding or pain. The timing never really matched up with my period so it never crossed my mind as a possibility until I started getting bad (and I mean bad) bowel movements throughout my period.

I had been bouncing back and forth between doctors for endless possible diagnosis (potential STD’s or a food intolerance were common) until a doctor booked me in for a surgery to confirm whether it could be endo.

There ended up being tissue on both ovaries and my bowels which explained my symptoms. After that I was told not to eat gluten, dairy, sugar or caffeine and I was told my chances of having kids past the age of 27 was low. I am frequently turned down Gynecology appointments at my local hospital due to short staffing and my case not being an emergency. I still have so many questions.

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2.

I’ve always suffered with horrendous periods and ovarian cysts since I was 13. Finally at age 21 I found a gyno who agreed to do a laparoscopic surgery to figure out what was wrong with me. I was told after that I had stage 3 endometriosis. Sadly the surgery did not provide any relief and I’ve since been directed to a chronic pelvic pain clinic. The only thing that has helped with my pain is CBD oil. I’m so grateful to have a husband who is compassionate towards this disease.

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3.

I was initially diagnosed by abdominal ultrasound when I was 21 years old (one month shy of turning 22 years old). The ten years before that, I thought it was so normal to have heavy periods requiring two maxi pads and awful cramps that I forced myself to go to school. After that ultrasound, I realized that my periods exhibited textbook symptoms, so I fought tooth and nail to get the diagnostic laparoscopy to confirm the diagnosis. It was an uphill battle for nearly two years. Due to not having the laparoscopic diagnosis, I often doubted that I had endometriosis because I did some crazy things while on my period like swimming in a hail storm in January when I was 15 years old. The Schrödinger’s Cat situation drove me mad and caused me to believe that I had a parasitic twin. Nearly two years after the first ultrasound and seven appointments later, I finally got the green light for the diagnostic laparoscopy in July 2018. I waited five months for the surgery so it wouldn’t interfere with the semester. On December 18th, I was formally diagnosed with endometriosis that had spread to my bladder and bowels. There was no parasitic twin. I am relieved to know that my pain was really caused by endometriosis and the two years before weren’t a lie.

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4.

I first knew something was up when my low back hurt so bad I couldn’t handle sitting in my chair at work. I was in my early 20’s. I was lucky enough to have a doctor who listened to me and wanted to do a laperscopic procedure to “take a look inside.” That’s how I officially found out I had endometriosis. The “clean up” surgery worked for a few years but the pain came back. I changed birth control so many times to help to no avail. So I had a second surgery 3 years later. That lasted about a year before my symptoms came back, and now they were worse. By this time I’m 34 and married. After a year of careful thought and soul searching I made the decision to have a partial hysterectomy. My husband was so supportive, this was not an easy decision. But as my husband said “I only care about you feeling better” Best husband ever. So at 35 I had a partial hysterectomy. I am now 3 months out from surgery and it was the best decision I made. I didn’t realize how much constant pain I was in until it was all gone.

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5.

It took 3 emergency room visits and several doctors before anyone took my pain seriously. I had hemorrhage-like periods for years and was put on hormonal birth control for it. I ended up hospitalized due to the pain and was told “the source is unclear” by a male physician. Finally, a wonderful female physician diagnosed me at 24 and I’ve been in pain management since. It’s something I wear proudly.

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6.

My diagnosis was quick once I actually trusted my gut and went to see a specialist who came highly recommended. I assumed my struggles of heavy, prolonged flow and intense pain was normal and I lived off a box of OTC pain killers every month just to make it through the days on which I had my period, but in hindsight, I can admit that I thought it would look like I was making excuses or being a hypochondriac about my period, and avoided actually bringing it up with my doctor. When I was being woken at night from intense back and stomach pain, I had to accept that my symptoms were definitely not normal. I was quickly booked for surgery after seeing a specialist and after laparoscopic excision, the specialist confirmed that there was a golf ball-size growth removed during the surgery which had been the cause of relentless pain, prolonged, heavy periods and a host of many other symptoms which I hadn’t even realized were being affected by my endometriosis. Since then, though my condition can’t be cured through surgery, it has prevented further complications while also improving the flow and length of my period. And now, I am aware that there are many ways endometriosis can affect my life on a daily basis, but at least I am able to handle these side effects and not assume I am being a hypochondriac because now I know the cause.

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7.

When I first began having periods in 5th grade, they would last for 3-4 weeks at a time, and I experienced debilitating pain. My mom didn’t know anything was abnormal about it since she and some of her relatives also experienced the same thing until they all got hysterectomies. It was my aunt who finally told her we should see a doctor. My doctor put me on birth control to suppress the issue at age 14. When I got to college, I started feeling more pain between periods despite the birth control. She would just prescribe me pain medicine. When I finally told her one day, “I think I have endometriosis,” she replied, “Yes, you do.” I was so angry with her that day for having known all of those years what the issue was and never telling me. I began having trouble getting pregnant shortly after that, and it wasn’t until then that she or anyone else wanted to actually find a solution to my endometriosis other than “suppressing” it with birth control.

ravensd

8.

I had HORRIBLE PAINFUL periods for over 20 years. I saw multiple doctors and each one would would prescribe me a different birth control pill to try, none of them worked. I finally found a doctor willing to perform surgery. I was told that I was one of the worst cases of endometriosis he ever saw, that is how was diagnosed. I also has multiple fibroids and cysts on my ovaries and cervix. I had to have a total hysterectomy at age 36.

marykh2

9.

I started getting pains when I was about 12, doctors thought it was my appendix at first but then said it was just my period starting and I wasn’t “used” to it. I saw multiple doctors over the next 9 years and had several different tests done, I was told it was PCOS, it was just the reality of being a girl, it’s because I expected the pain that I felt it and finally – that it was all in my head. Sex was like being stabbed with a knife, and made relationships impossible. I struggled to focus on school and then later work. Finally I went back to my GP and simply told her I couldn’t live like this, she offered to refer me to a gyno but said it would cost alot of money to which I told her I had insurance- turns out she hadn’t referred me earlier cos she didn’t think a 21 year old could afford it. My gyno was amazing, within 6 months I had the operation to diagnose and treat endo. Even though it meant something that has no cure I was relieved that I finally had an explanation, and that it was by no means “normal” to be in that much pain. I will admit I was tempted to take my results back to the doctor who told me it was all in my head and shove it is face.

sllvowles

10.

My very first period at age 13 lasted 2 weeks and was extremely painful. That’s how it went for a few months until my mom took me to the gyno. They gave me birth control which helped. I still felt pretty shitty every month. At 15 I was having pelvic pain and when I sneezed hard my ovaries hurt. It was brushed off. I asked about Endo but they said it was impossible at my age. I started gaining weight at 16 and it went out of control until 18 when someone tested me for hypothyroidism (definitely had it, but gynocological concerns ignored, dismissed as obesity issues). At 19 I was diagnosed with PCOS. The pain was attributed to that. This whole time no treatment besides the pill was ever offered. Every year I asked about Endo and was told I was” too young” to have endometriosis. For the next few years I begged doctors to look or diagnose me. I was in so much pain every month I had to take at least 1 day off of work. One time I couldn’t walk without vocalizing pain. At 25 I had a 7 cm cyst everyone refused to remove despite the pain. They also denied I could have endometriosis because I was “still so young”. They just kept changing my pill brand. One asked me how I knew I had it and
I described how it felt like my colon and uterus were connected but were constantly being ripped apart. It was dismissed as constipation. The cyst has since shrunk a bit. After 5 gynocologists (all were women btw) and at age 27 when I wanted children, finally a doctor took me seriously. She listened to everything and did an exam with ultrasound. She said she had no doubt I had it. She recommended waiting on surgery until after kids. She also was appalled no one ever recommended an IUD. That was incredibly helpful. I’m no longer in constant pain or discomfort. With her help we got twins. I’m probably finally getting laproscopic surgery this year. And now my gyno isn’t saying things like I am too young despite having all the symptoms and being in crippling pain. Honestly the birth of my twins was less painful than the ripping sensation of the Endo.

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11.

I’m 17. Nobody believed me when I said something was wrong until they saw the effects. It took seeing me curled up on the floor, unable to stand and vomiting from pain for my family to take me to see a doctor. Getting diagnosed is so difficult when everyone thinks you’re just being a hypochondriac. I was taken to a female doctor, who took me seriously and scheduled an ultrasound, which revealed endo growths scattered across my lower abdomen and ovarian cysts. After years of being dismissed and feeling invisible, it was relieving to finally be seen and helped.

Stay.Weird7

12.

I’m 18 years old and for the past year I’ve been in severe pain for two weeks of the month, every month. The week before my period I would get these horrible pains in my stomach and would have to curl up in a ball. Then the next week I had my period with all the normal terribleness it brings. This year has been the first one that I was away at college, so I figured that maybe it was just because I was nervous. I never wanted to call my mom when I was in pain because it hurt to do anything and when I wasn’t in pain I didn’t want to talk about it because I didn’t want to think about. This happened up until 3 weeks ago when I was home and I was going through my normal symptoms. My mom saw me and immediately booked an appointment with the doctor. I went to my normal doctor who had me make about 5 other appointments. I was going to my last one and was starting to give up hope. The doctor looked at my ultrasound for a few minutes and then said that she was pretty sure that it was endometriosis and that there were some easy things I could try to fix it. She also told me that it was going to last until menopause. It’s scary knowing I’m so young and have something I’m going to have to live with my entire life, but I’m glad that I at least know what it is and have people helping me feel better.

feeneyb

13.

I had symptoms pretty much from the time I was in high school. I’d have heavy bleeding, awful cramps, and extreme moodiness. When I was about 23, my mom told me I was going to go on the pill if only to help with the moodiness and tears. We started with Ortho Tri-Cyclin. The first month went fine, and the second month was the worst month I ever had.

I ended up having to change ob/gyns, and when she took my history, she said it sounded like I could have endometriosis. I didn’t want to do surgery right away, so she prescribed me a different birth control pill (I forget which one) and said to skip the placebo week and just take it straight through. I did that and, on my honeymoon (the 2nd month), I had a surprise period with awful cramps – I even missed dinner one night. When I came home and saw her again, she said that was a positive result…and we did surgery and cleaned it all up.

The surgery did so much good for me! I’ve still always had trouble finding a birth control pill that works on a consistent basis – I always end up having irregular periods while I’m on them – it’s been 20 years, and I’m just now really starting to feel the things that let me know it’s back.

Please, if you don’t feel right, tell your doctor! They can help!

Kathernelson

14.

I was diagnosed when I was 20 after 5 years of excruciating pain. I had a total of 9 hospital admissions in the first year alone, that does not even include the emergency room short stays. I kept getting turned away by doctors, specialists, nurses. Everyone. They kept saying it was phantom pain, to change my diet, exercise more, it’s just cramps. I changed my whole lifestyle. Still pain. Not once did anyone ever mention that it could be endometriosis. I have other medical conditions that are hard to understand (Ehlers Danlos) so everyone just said that it was because of the Ehlers Danlos. I got to the point of unbearable pain one day, I noticed I was bleeding a lot, bright red Frank blood, my periods never came so this scared me. I passed out from the blood loss and fear. I woke up in the hospital, attached to all these poles and they said that they are taking me in for emergency surgery because they think I’m miscarrying. I wasnt pregnant, I hadn’t had sex recently so I knew for sure. They rushed me in and finally saw it. I not only had Endometriosis, I had PCOS with a burst cyst. I waited 5 years to find out that it wasnt in my head, I was suffering every day and now, I have been told I can never have kids and will need surgery every year because it is so extreme. Why wouldnt they listen?

natashamoore07

15.

I was diagnosed with stage 4 endometriosis when I was having surgery for uterine fibroids at age 32. I had always had horrible periods where I was in excruciating pain and frequently missed school or work. Sometimes I was even vomiting. I started having severe pain in my lower back that lasted all month but was particularly bad during my period. I also had my period nearly all the time for two years ( yes, two years). My doctor sent me for X-rays for my back pain and to physical therapy. She told me I would be dealing with this pain for the rest of my life because it was from a hip issue from when my hips were dislocated at birth ( my mum took me to specialists and I was treated properly and never had issues before). At this point I was drinking liquid Tylenol from the bottle and going through several bottles a week. I was teaching high school biology at the time, and I would literally lose the ability to speak in the middle of class from the pain. My doctor also gave me injections in my back that somehow made it worse- I nearly passed out in her office. I started googling my symptoms myself, and suggested one of the diagnoses I found to her – fibroids. I went for an ultrasound and that was what I had. She wanted to give me a hysterectomy. I went to another doctor that told me the same thing. I then flew home to Boston to see a specialist there, who assured me I did not need a hysterectomy and I scheduled surgery. Turned out not only did I have three different types of fibroids, but I also had two different kinds of ovarian cysts as well as stage 4 endometriosis. It was a seven hour surgery. They removed 8 pounds of fibroid tumors, one of which was the size of a grapefruit. (Quite shocking the physical therapy didn’t help with the tumors or cysts or endometriosis.). I had two subsequent surgeries to remove more fibroids and to remove more uterine lining from around my organs. When they were wheeling me out of the first surgery, I remember struggling to open my eyes and working really hard to speak so I could ask the nurse ( I think it was a nurse) if I still had my uterus. That is how afraid I was that I would wake up without one. Ladies- I had been asking doctors for YEARS if there was something wrong with me and I was always dismissed. No one believed me. You need to keep looking for a doctor that will listen when your body is telling you something is wrong. You are not crazy, or dramatic, or exaggerating. (Quite shocking the physical therapy didn’t help with the tumors or cysts or endometriosis.). You have to fight for yourself. I recently had to fight for myself again to get my employer to make accommodations for me. Endometriosis is considered a disability- it is a chronic pain condition and you are entitled to reasonable accommodations so you are not, for example, using up all your sick and vacation time because you are incapacitated every month. There are also treatments that will help. I pretty much stopped getting my period because my dr had me take birth control pills all the time- no sugar pills- and it was life changing. I’m trying to get pregnant now so I’m dealing with symptoms all over again, but hopefully it will be worth it ( although I don’t have much hope).

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