Endometriosis story

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

My diagnosis for endometriosis took 9 months.

by Allison Jones
(Kansas )

I never seemed to have problems with periods or unbearable pain associated with them when I was younger, although I did have lower abdominal pain around 17 years old that was diagnosed as IBS. (now I'm wondering if it was endometriosis.)

I was on birth control from 16 years old on, but switched 2 years ago (22 yrs old) to the depo shot. I was on that for about a year and had severe weight gain, so I decided to go back to oral bc.

About 6 months after I switched my husband and I decided to start trying to conceive. I talked with my doctor and she said everything was "good to go".

That's when things took a turn for the worse. The same month I stopped taking the bc, I had irregular and frequent periods. Every two weeks! I talked with the doctor and she told me to come back in 6 months when my body had time to "reset".

About 2-3 months later I started getting a horrible pain in my lower abdomen that was not going away. I went to the doctor and they found an ovarian cyst. I was very upset when she told me they wouldn't do anything for me and it would "go away" on it's own.

It did eventually go away after getting a recheck, but the pain never went away. I was sure to mention the pain to the doctor, but she said it could just be from the follicles from the cyst.

Frustrated, I didn't go back to the doctor about the pain. I started to get very sick, flu like symptoms, so I went to a GI doctor, who started tests immediately for anything and eveything. In the meantime I revisited the obgyn for irregualr periods. She tested for poly cystic ovarian syndrome, but was negative. She never even said the word "endometriosis".

I also had a CT scan through the GI doctor, which revealed inflamed lymph nodes, I took antibiotics, no help. Next was a Meckels scan which revealed "abnormalities" in my lower abdomen exactly where the pain is. They thought it was a "pocket" so I was sent to a surgeon.

They took out my appendix, but were unable to find a "pocket", instead he found endometriosis. I am now waiting for my appt with the obgyn, and I am praying they finally do something since I have a written report showing I have endometriosis.

I am hoping they remove the tissue so I can try to conceive. The pain and all of the doctor visits and the first surgery have taken so much out of me. The Endometriosis pain is worse than the surgery aftermath. Mostly frustrated with the doctor that should have suggested or tested for Endometriosis, instead it took an unneeded surgery to find it. I am ready to move on and start my family.

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