Endometriosis story

  These stories can help other women so they do not feel so alone when trying to cope with effects of this disease.

Diagnosis missed despite severe endometriosis

by Trish

Since I can recall I have always had severe pelvic pain. Throughout grade school I couldn't keep up with the other kids. I fatigued easily. I always came home with a migraine after school. I was easily nauseated and had "IBS-like symptoms", anxiety and depression symtoms and they medicated me... a prepubescent child from the age of 8-14.

At age 12 my cycles began and they were normal for the first year. By 13 I was doubled over in pain from cramping that would start in my low back, to my pelvic region and down through my entire legs. I would bleed heavily for a week or more, and my GYN dismissed it as normal, but heavy periods. I just needed more exercise.

I suffered this way for two years until I got my license and was able to make my own Dr. appointments. Trying desperately to be my own advocate I sought out new physicians who all gave me the same diagnosis. Irritable Bowel Syndrome. All tests came back normal.

By age 18 I became so incredibly ill I was bedridden for nearly 3 months. I lost 40lbs from inability to eat and had no one, physician or family to turn to. Everyone thought I was a hypochondriac.

I gave up on the medical field and decided that if something was really wrong it was going to have to kill me because the tests (colonoscopy, upper endoscopy, CT, X-rays, barium swallows, stool samples, every blood workup) showed nothing.

Somehow, I pulled through my bedridden fiasco and just picked up and moved to live with family in New York City. I found a good job and was feeling well. Within a year I decided to go back home to attend college, pre-medicine in fact.

My first two years went fantastic until I was unable to sleep at night and found my heart beating extremely fast at any given moment. I had been to see doctors for this before, and since childhood I was diagnosed with anxiety, but this was much worse.

I wasn't anxious or panicking. Months later I would be diagnosed with near-dearth hyperthyroidusm (graves' disease) that would ultimately end in my having to take medical leave from college. Ironic.

I had to undergo 4 surgeries for the effects of undiagnosed Graves'. But that was just the beginning of my surgical journey.

By 23 years old I was still on the hunt to find someone or something to relieve the pelvic pain which I could no longer endure. It had gotten to the point that I could not socialize anymore.

I had terrible bowel symptoms. Pain when sitting, urinating, bowel movements were unbearable. I was in a 2 year relationship with someone and very much in love and intercourse was completely out of the picture because of how excruciating it was and for days afterward. I knew these were not IBS symptoms. With my medical knowledge I sought out a GYN surgeon. But my body once again threw me a curve ball.

I was visiting my family in NY and my nephew came down with a stomach virus. I became ill the next day. I didn't get better though. I stayed ill for three months, this time losing 60 lbs which I could not afford to loose. I wanted to eat but my mouth produced no saliva and if I did get anything down I would get the sharpest pain radiate through my entire torso and back. I was sure it was a heart attack at first.

When I thought rationally I realized it could be an ulcer or more likely my gallbladder I went to a general surgeon and told him my plight. They did an ultrasound which showed my gallbladder was full of stones. His reply was that I did not need surgery, that people walk around with stones and don't even know it, everyday.

I made an appointment with the chief of surgery and he did an ultrasound and a HIDA scan. My gallbladder was full of stones, completely contracted, functioning at 0% and I needed it out before it became necrotic. Thank goodness for him. I also told him of my pelvic symptoms and he suggested that he have the head of GYN surgery come in on my procedure and take a look at my reproductive organs.

The gallbladder surgery gave me tremendous relief. The GYN surgeon saw nothing remarkable except a large cyst which was aspirated during the procedure... (but we all know they come back.) Polycystic ovarian syndrome, doesn't everyone have that?

I recovered very well from the cholecystectomy. I could eat again! I stayed away from fats for a while, but the post cholecystectomy syndrome kicked in and I had to start to watch my diet... stay away from fatty foods, get on a proton pump inhibitor because the acid reflux was killing me, but for the most part I was feeling good. Until my pelvic pain came back with a vengeance.

By this time I was back in collage studying surgical technology and keeping a 4.0. When the pain became so severe that I could hardly breathe. I knew I could rule out the gallbladder, I no longer had one. All other organs checked out. Thyroid function was perfect. I begged my GYN surgeon to open me up and look for endometriosis, I had all of the symptoms, something was terribly wrong inside me.

He referred me to the replacement chief of surgery (all the good ones leave) who told me I had Irritable Bowel Syndrome. I honestly wanted to choke him right there.

In the days/weeks to follow I researched everything I could about endometriosis and pelvic pain/fertility specialists/surgeons. I found a surgeon in Philadelphia who would change my life.

His office sent me a 14 page intake form asking questions about my entire life with regards to my cycles, pain, medical history, etc and by the time my appt came around we spoke as if he'd known me forever. He did a pelvic exam, and ultrasound in his office, as well as a complete blood workup (as he is also a reproductive endocrinologist).

By doing the pelvic exam alone he looked me square in the eye and said " I am certain you have endometriosis and would like to schedule you for surgery this week". If i hadn't been lying down I would have fell over. It was a miracle.

I had surgery that week and the pain afterward was excruciating. I thought I had made a terrible decision. Every week for four weeks it seemed to get worse. I felt something was very wrong and I called my surgeon everyday who swore I was healing. I had a severe case and it would get worse before I got better but when I did I was going to be SO much better.

I was in horrible shape. I couldn't urinate or have a bowel movement and was ready to call a lawyer. I was in the worst state of my life.

By the fifth week I was able to do more and more every day including drive to Philly for my follow up.

I was disgusted by the pictured he showed me. How could my old GYN have missed that during my gallbladder surgery? Did he even look?? A small segment of my descending colon had to be removed completely destroyed by endometriosis, same with my appendix.

The entire pelvic wall was covered and adhesions and endometriosis covered all of the structures surrounding my hepatic flexure (where my gallbladder was located, likely causing it to malfunction). Fallopian tubes destroyed, endometrium as well.

I was outraged and could have filed malpractice on my old surgeon. But I remembered what I was going to school for, and that I wanted to be a surgeon someday. People make mistakes, people are negligent. I would only cause myself more aggravation by dragging it out further. My surgeon did send him his findings in detail and that was reward enough for me.

I did end up healing and I am still healing incredibly well. I still have pain, I still need further surgery. I am 30 years old with no children and have come to terms that I'll never be able to birth one of my own, but then I do have a miracle doctor so who knows...

I graduated last year with a 4.0, recently got off of disability and found very gainful employment as a process technician at allograft tissue foundation. So be an organ donor!

I wish you all the best, find your miracle doctor and very most importantly of all BE YOUR OWN ADVOCATE!!!

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