Endometriosis story

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

Endo returned after 1 year...

by HS

My endo story began when I was a teen. After being placed on birth control to try to control the long periods, cramps and heavy bleeding - all the doctors thought I was making up the pain.

Several trips to ER thinking I had appendicitis. Each visit I would take a sharpie and circle where I was having pain. Doctors thought I was crazy but I needed something to document what I was going through.

I never had appendicitis, I was always sent home, again with the doctors not believing I was in pain. I spent years going to gastro doctors, test after test with the final diagnosis being IBS. My pain subsided in my 20's and I had no problems getting pregnant twice.

After reading so many stories from other women, I know this was an absolute miracle. After about a 10 year silence, the disease started to show itself in very sneaky ways. Chronic bladder infections, sore breasts 24/7, heavy periods that would come about every 6 days and last 4 days. Hemorrhoids and constipation were the worst!

Through all of this I really didn't have any cramps or much pain, just an inconvenience. Once the pain hit I truly did not know what to do. I woke up in the middle of the night screaming in pain and it just didn't go away. It kept intensifying. My obgyn thought I had a cyst that burst, even though the ultrasound didn't show evidence of this.

The tiny cyst he did find didn't explain the amount of pain I was in. After 4 months of this he did a lap surgery to determine what was going on. In the process he removed a massive amount of scar tissue, a cyst and did an ablation. He said I definitely had endo and adenyomyosis and that my organs were bound together and in the wrong places.

The relief I felt when he told me the news was overwhelming. For someone to solidify that I actually had an issue was amazing. So we made a plan and he assured me that the ablation removed everything.... Well, as we all know ablation doesn't do the trick!

6 months later I had a total hysterectomy and to this day do not regret it. Yes, I am on HRT and yes my endo came back after 1 year but even in the absolute pain I am in now, that doesn't compare to the pain and issues I had before the hysterectomy.

It is night and day for my situation. I have since had another surgery to remove more endo and scar tissue from my organs and 6 months later I am still in pain contemplating another surgery. I have switched doctors and found a specialist that is helping me with the right HRT formula.

It is just a very slow going trial and error process. The bad part is that once the pain starts, I do know how to get rid of the pain without surgery. Once it is triggered it is full blown (for me anyways).

I struggle with thinking that I will never be pain free and that I am always going to in a way be walking on eggshells with my endo. I am good for 6 months but if I take to much estrogen one day, then BAM I am back fighting with it..... And it always seems to win...

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