Endometriosis story

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

12 years sick and finally a diagnosis

by Michelle M.
(Panhandle, Fl )

I guess I've always figured something was wrong with me and that's why I was so bad about going to the lady doctor. In 12 years I've only been three times but in those 12 years I saw tons of other doctors that had the opportunity to diagnose me and never did.I've always had very heavy periods and painful periods and cramps since as little as I can remember...maybe 12..14 years of age.

I had found and had previous cysts(large over 3.5cm) and fibroids when pregnant with my daughter in 2015 ( she was a miracle baby had a miscarriage before her). Being pregnant enabled the endometriosis to go into a dormant stage for almost 2 full years. No pain, but still heavy periods but no cramps or migraines or nausea or dizzy spells.

In 2017 things started to get really bad. Very painful periods, painful bowel movements, nausea multiple times a day making me have to lay down for extended periods of time. Then in early 2018 a man thought I was pregnant from my endo belly bloat. In 2018 I was told I had irritable bowel syndrome. I dealt with these symptoms for two more years until one day I had a crazy onset of pain and I found this big bulge down by my c section scar.

I thought I had gotten a hernia but after the CT results came back from the ER in March 2019 they stated I had a 9mml mass that was from the endometriosis...it came back as uterine tissue three weeks after my surgery to remove the mass happened. The doctors still being wrong diagnosed me with secondary endometriosis instead of just endometriosis.

A month later I got into the lady doctor who discounted the IBS diagnosis , and the secondary endometriosis diagnosis and all of my other anxiety diagnosis's stating that it was endometriosis. All those years the doctors treated me like a pill seeker for pain medication or labeled my nausea and dizziness and inability to eat a single full meal because I'm so bloated and full all the time. They made me feel like I was going absolutely crazy discounting everything I said.

I have true endo belly where multiple times in the same day I can look thin then have a flare from something I ate which causes me to look 6 months pregnant within 10 minutes. For years doctors where on me about my low BMI and weight but with these symptoms its incredibly hard to eat its almost better to not eat at all in my opinion because literally EVERYTHING flares the endo belly so by not eating at all I can **try** to avoid it.

But after a few years of doing that it just turned into a really bad eating disorder. Soo.. my husband and I have wanted a second child for going on four years. I'm getting my tubes checked next week. If they are blocked I will have to get a hysterectomy. I have mixed feelings about it. We have been trying for another child for almost 4 years. I wasn't done trying but my last pregnancy was very high risk..I got precclampsia and a host of other things it definitely was not enjoyable how it should be with a "normal" pregnancy.

We feel now that its really severe if anything would happen due to it...maybe it might just be better to stop trying. As for the Hysterectomy I heard that sometimes they don't even help with symptoms and can even complicate matters worse with worse pain. I don't ever want to feel that pain again but I know until these new medications kick in and I have the surgery that it can return at any point and the pain is so severe it feels WORSE than childbirth.

We figure I've had the endometriosis since about 2007 so for 12 years- I'm 32.. it did its thing never controlled by even birth control because birth control can makes me moodier.

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