It’s time for me to share a very personal story. I was recently diagnosed with endometriosis, a chronic disease where the endometrium grows outside the uterus and results in internal bleeding, lesions, inflammation, and can cause pain, infertility, scar tissue formation, adhesions, and bowel problems. Although this is my experience, endometriosis affects 1 out of 10 women, it is the cause of nearly 75% of cases of chronic pelvic pain, and yet the average time it takes a woman to find a diagnosis is seven years. This is simply the story of my journey for a diagnosis, but I hope to continue posting my experiences as I try to live my best life with endo, in hopes that it will help others live theirs.
At age 25 I just started realizing that the symptoms of my period I had been writing off as normal for the past 13 years, are not “normal”. I started questioning my symptoms about a year ago when I thought my appendix was going to burst and I almost went to the hospital. Now for me to even consider going to the ER, you have to understand how much pain I was in. You are talking to the girl who jumped right up after slipping on ice and getting a concussion, and continued to run the salon and take clients that day without taking any time off to recover. The same girl who fractured the top of her foot after someone accidentally stepped on it at an amusement park, and continued to walk around on it and ride roller coasters for another six hours. The same girl who stepped on a broken wine bottle at her wedding in bare feet, and continued to dance in heels for the rest of the night when I probably should’ve gotten stitches. The same girl who… Never mind you get the point, I have an insanely high pain tolerance. My rib cage is tattooed from my underarms to my hips and that was more annoying than painful. So for me to even consider going to the hospital for pain scared everyone around me. I didn’t end up going to the hospital that day for appendicitis, (thanks WebMD), but I did however begin hearing theories from other people when they heard about my symptoms.
A coworker: “you sound like my friend who has endometriosis, has your doctor ever told you that?”
My sister’s RN friend: “has she ever been checked for ovarian cysts or endometriosis?”
My mom: “are you on your period? I always had a horrible pain like that until I had a hysterectomy.”
I was on my period at the time, but I had never even considered that there could be something abnormal about it, until I started researching my “normal” symptoms.
I guess it pretty much started right away, my periods were very heavy and so painful than I would stay home from school or go lay down in the nurses office. Then at about 15 I had a period that lasted 27 days. My mom took me to the gynecologist and they put me on birth control to regulate it. Things improved a bit, but I still had horrible cramps. One day in high school, I was sitting in class and the pain from cramping was so bad that I fainted (This would happen again years later while I was home alone). My gynecologist at the time ignored my claims that I had passed out due to the pain, and decided that I was anemic. Also “just in case” it was a side effect of the pill, he switched me from the pill to a birth control patch.
As years went by my symptoms got worse: the horrible cramping was still there, but instead of just affecting me the week of my period, cramps would start showing up the week before, and would hang around until a few days after my period ended. The pain ranged from a dull ache to an intense stabbing, and was always constant. It began to affect my daily life for two weeks out of the month. It sometimes prevented me from falling asleep, and would wake me up once I had. Not to mention the back pain, nausea, headaches, urinary tract pain, and total exhaustion. My mother was very sympathetic to my issues, as she herself suffered from “really bad periods”. So bad in fact that in her early 40s she had to undergo a hysterectomy due to complications from her menstrual cycle. While they were operating they also had to remove a lot of “scar tissue” and “lesions”, the cause of which were never discussed with her.
Most girls learn about their periods from their mothers, and since my ‘normal’ was also her ‘normal’; I didn’t think there was anything abnormal about my symptoms. So I just popped Midol for two weeks out of the month like it was candy, became best friends with my heating pad, and didn’t ask questions.
Eventually I would discover that I have a gluten intolerance, and began blaming some of my symptoms on that. I gave up gluten and noticed a reduction in cramping, headaches, and exhaustion. Months went by and although my health improved I was still waiting to feel 100%.
Here we are two years later, back to the “appendix incident”. At the advice of my sisters friend, I googled endometriosis, and while reading the symptoms it was like a lightbulb went off. The next day I called my new gynecologist to schedule an appointment. I was feeling optimistic, I’d been living in Columbus for years, and chalked up my previous experience with a gynecologist to the fact that he practiced in the small town I grew up in. I came prepared with my ‘appendix’ story, and a list of the symptoms I’d been experiencing since I was 15. I also brought up the possible family history of endometriosis.
My doctor listened to me that day for a total of 8 minutes, and then asked me one question:
“Do you experience pain during intercourse?”
The answer was no, and just like that my problems were waved away with this response:
“Periods are not supposed to be fun. Try taking midol, and laying around with a heating pad when you experience the cramping. Honestly, you’re just not in quite enough pain for me to think you have endometriosis. Besides if you did have endometriosis, the treatment I would prescribe, would be to put you on the pill, and you’re already on birth control, so there’s really no point in diagnosing you. In the future, if you have trouble becoming pregnant, we can return to this discussion.
(I would later read a statistic that only 45% of women with endometriosis experience pain during intercourse.)
I cried in the car for a half an hour after this appointment. I knew something wasn’t right, but she made me feel that something that affected my daily life, caused me to cancel plans, and didn’t allow me to be as hard-working as an employee as I knew I could be, was all in my head, and I was just being dramatic.
This sent me into a depression. My loved ones encouraged me to get a second opinion, but at this point my trust in doctors was lost. I never wanted to feel the way she made me feel ever again. I also started to convince myself that it was pointless to seek a diagnosis for something which there was no cure. I decided I knew my body and I would figure out how to treat it. I began eating Paleo 90% of the time to reduce inflammation and started feeling some relief.
But the depression didn’t go away, not only was I in pain, I also thought I was crazy. Was I just imagining things were that bad? Was I being dramatic? Maybe I did have a normal period, but I was overreacting. My work suffered, relationships suffered, and although I thought I was putting on a good face, someone I barely knew asked me if I was going through something, because I hadn’t been myself for a while. A year after my nightmare gynecologist appointment, it was time to try again. I just needed someone to tell me my pain was real.
At the suggestion of a good friend, I began seeing a holistic doctor. At my first appointment he listened to me and asked thorough questions for two hours before he even began the physical check up.
At the end of the appointment he said: “It is my opinion that you have polycystic ovarian syndrome and endometriosis, but the only 100% sure diagnosis for endometriosis is laparoscopic surgery, which I do not recommend.” I had no idea how happy hearing that I have a chronic disease with no cure would make me. Well, not that that part made me happy, but some one finally listened and took me seriously!
He then devised an all natural treatment plan for the symptoms, and we’ve been working together for about 3 months. I have been feeling better, but I accept that I will probably never feel 100%. As I’m writing this now I’ve actually been having and endo flare up for the last 48 hours. But things are looking up and I’m no longer depressed.
I hope my story helps you to find the courage to seek answers if you know that something isn’t right. You know your body better than anyone, even your doctor, so if someone brushes you off when you know something is wrong, it’s time to move on from that relationship. This includes friends and loved ones, endometriosis is not something you want to experience alone, you should surround yourself with people who love and support you, even if they’ll never understand how much it really sucks.
*Update: I found a new gynecologist who agrees that I have endometriosis, and although I am going to hold off on doing any of the treatment options she discussed and continue working with my holistic Doctor, it’s just nice to have confirmation that it isn’t all in my head.