Endometriosis

My Story

I am 1 in 10. 

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Of course I heard what many women with endometriosis hear, “it’s just a painful period, that’s all.” It took more than 18 years, countless specialists, doctors, a trip to the Mayo Clinic and still more time to fully learn the truth. 

During high school and college I really struggled with my health. I went to several doctors trying to learn why I was in so much pain, why I’d go through extended periods of time where I was extremely nauseous, why I was exhausted ALL THE TIME, and why did I always seem to catch every cold or flu bug that was going around? I was constantly told that it was all in my head. It was just anxiety.

I forced my way into a few specialists’ offices, only to be misdiagnosed with several conditions. After many tests, my favorite being the time I ate radioactive scrambled eggs so they could see how my body digested them, I was told I had IBS, a bladder condition called interstitial cystitis, and non-ulcer dyspepsia (a fancy way of saying I had an upset stomach and they couldn’t figure out why).

During all of this I had one doctor, a new gynecologist, who was the first person to mention endometriosis to me. And while he thought I likely had it, he said I was fairly young and my pain was not affecting me enough to warrant such an invasive surgery, which is the only way to truly diagnose endometriosis. (Technologies have greatly improved since then and you can find surgeons who specialize specifically in minimally invasive laparoscopic surgery for endometriosis). He also told me the surgery was expensive, he and knew I probably couldn’t afford it so I should focus on my other health issues.

Once “diagnosed” with the grab-bag of other conditions I wasn’t given any guidance. No medications, no talk of how to manage anything, all I was given was a “restrictive diet”. In the many years prior to my endometriosis diagnosis I was told to go on AT LEAST 6 different restrictive diets, to “help ease my pain” and while some worked for a short period of time, I was still constantly sick. 

In my mid 20s, I moved out of state after getting married. I had to find new specialists, which seemed like a good idea because I was still constantly sick and felt like I didn’t have any answers. These new specialists did some more tests and let me know that my previous diagnoses were wrong. I did NOT have the bladder condition and one doctor swore there was no way I had endometriosis (which I was still not officially diagnosed with), so I completely put endo out of my mind. These doctors believed that I probably had IBS and gave me another special diet to try, but other than that I was sent on my way. 

A year later I became so sick my life completely stopped. I couldn’t even sit up because I was so dizzy and nauseous. I pretty much stopped eating. I had to quit my job, and I literally lived on the floor of my living room. I reluctantly visited a doctor again, a general practitioner, who worried I might have a chronic condition called Gastroparesis, which can be a quite severe GI condition, and I was told to try a liquid diet (another special diet – yay!). At my wit’s end, I forced my general practitioner’s hand and he booked an appointment for me at the Mayo Clinic in Florida. I finally felt like I was going to get answers.

I did several of the GI tests I had done in the past and it was concluded again that all I had was IBS and the best course of treatment for that...you guessed it, a different restrictive diet. I did meet me an OBGYN specialist there and they again dismiss me and my inquiries about endometriosis.

Initially, I was elated to have a proper diagnosis, especially “only” IBS. It’s such a common condition that I thought I could surely manage it. And besides, I’ve just seen some of the best of the best doctors in the US, how could they be wrong?! I followed the Low FODMAP diet, and it helped manage the pain, but I had regular flare-ups no matter how strictly I adhered to my diet. 

Years later and I was still struggling with my health. I was so frustrated that I still got sick even when following my diet to a T. My work was stressful and so the pain, my bloating (that can instantly make me look about 6 months pregnant) and the nausea is attributed to stress, which can make IBS worse. I work several different jobs, where I always seem to be running out of sick days. I’m forced to use my vacation days for doctor’s visits and when I’m sick. I eventually run out of all time off. Finally, I decide to seek out an endometriosis specialist. 

I was in my early 30s and I was finally diagnosed! I finally knew what I was up against. My endometrium grows primarily on my bowels. This, coupled with the fact that 80%-90% of endo warriors have bowel symptoms, it’s no wonder all my past doctors pointed to IBS. The surgeon performed an excision surgery to remove it and after the four long weeks of recovery time I finally felt relief. I was relieved from the ever present aches, from excruciating sharp pains, from extreme bloating, and from nausea for the first time in more than 18 years! 

I would love to say that is where my endo story ends but unfortunately that’s not the case. And it isn’t the case for most of us endo warriors. The surgeon sent me on my way, without any continuing treatment, and I was told that the best thing I could do was to get pregnant.

Pregnancy DOES NOT cure endometriosis. There is NO CURE. 

Neither a pregnancy, a hysterectomy, nor menopause can cure endometriosis. These were typical recommendations from doctors in the past because they thought the hormones associated with these “events” would help our symptoms, just as hormonal drugs DO NOT eradicate the disease but may help with some symptoms. 

Only six months after my first surgery, I ended up spending more time in bed than doing anything else and I felt completely helpless. Two years pass and I grew even more frustrated with my deteriorated health and sought a new endometriosis specialist. This doctor knew of the latest research and put me at such ease. He performed my second excision surgery, after which I have felt much better. 

When talking with someone about this the other day they asked me “why isn’t there more advocacy?” And honestly, I think that a huge reason is that us endo warriors are struggling with such a debilitating condition. Endometriosis is listed in the top 15 most painful conditions by the NHS, up there with heart attacks, sickle cell disease, and shingles. We struggle to live and function, sometimes on a daily basis and we’ve been dismissed and silenced by the US medical system for YEARS. It takes us approximately 7-10 years to be diagnosed properly. It took me more than 18 years. And the financial burdens we face, an estimated $10,762 per person, per year due to lost work productivity and direct healthcare costs, are crippling. We are just too damn exhausted, physically, mentally, and emotionally to fully advocate for ourselves. So I’m asking you, if you’re still reading after all of this, then please help advocate on our behalf. 

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