My diagnosis took over 20 years

by Betty S
(New York, NY)

When I was 12 my periods were so heavy and so long I was failing swim class from not being able to go in the water (plus I was mature enough for tampons).

My teachers asked my caretakers to bring me to a doctor. Which they did, but we were told by the doctor that my periods were normal and would even out with hormone treatments in the form of birth control.

Well - they didn't, and neither did my anemia or my menstrual cramps. They were so bad I would throw up.

Doctor after doctor prescribed me 800 mg of Ibuprofen 6 times a day and birth control pills to combat the issue. None suggested I might have endometriosis.

Fast forward to 5 years ago and I went to the doctor for pelvic pain and discomfort. I had developed a grapefruit sized cyst on one ovary and an orange sized one on the other. The doctors took a wait and see approach - which lasted a year and a half for the cysts to decline in size. Again no mention of what was causing them or of fertility issues.

Fast forward to a year and a half ago - I am looking about 5-6 months pregnant constantly. I am tired all the time; have trouble going to the bathroom; get dizzy; am very anemic. I go to the emergency room because my stomach bloats up even more.

There I am told that I am constipated and sent home to drink copious amounts of 'go lightly' (the name of which is very misleading) and told to go to a gastroenterologist.

I find a good gastro - and he starts with the normal tests: blood test, feces tests, etc. He finds nothing that would be contributing to the bloating. So it's onto endoscopy, etc. Nothing again.

He then sends me for an ultrasound to check my liver, bladder, kidneys, and lady parts. Bingo. A 5cm cyst on the left ovary and a few small ones on the right. And they are filling with blood.

Since my last GYNO was not hacking it, I found a new one. She wanted to take the wait and see approach and the cyst grew to 8cm in 2 months. Then she got angry with me for asking questions about what was causing the cysts and what we could do to make it go away.

I felt very uncomfortable with her and extremely uncomfortable at the thought of her doing surgery on me. But finding a doctor - especially a surgical gynecologist who has openings and a good record - is virtually impossible.

After doing my own leg work for weeks and coming up empty handed I went to Planned Parenthood. The physician's assistant did her best to find someone after she told me that this cyst was going to torsion and I would lose my ovary if I didn't get this out stat.

She called in a personal favor of a doctor at a world renown clinic and got me in - to see a doctor who specializes in endometriosis and cystectomy surgeries.

I am now 33 and I have just been diagnosed with stage 4 endometriosis. And I'm afraid that all those years that went by in between my symptoms beginning and now will have taken my fertility. I guess only time and trying when the time is right will tell.




COMMENTS


Name: Rachel

Title: Sounds like we were in the same boat!

I go for my first laparoscopy to look for endometriosis on Nov 21, 2012. I'm having horrid abdominal pain and have been swollen up with what I have been thinking is fluid.

They keep telling me that I'm constipated..Well that's not it I know. The gyno I see keeps telling me that he thinks its more GI pain than anything else... from what I have read, endometriosis can cause a lot of GI symptoms!

I'm glad you got your diagnosis and hopefully I will get mine too!! On another note, about the cysts, I used to have them all the time. The last ultrasound I had (my last visit when he scheduled the lap surgery) I only had one small cyst and he said that was not causing my pain either...