Endometriosis story

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

Endometriosis Horror Story

by S. Tracy
(Omaha, NE)

I went in to have a partial hysterectomy because of endometriosis in March of 2011. I was having very bad bleeding with my periods. My husband and I were unable to conceive (unknown reasons) so we adopted 2 kids.

Since our family was complete, I was ready to be over these awful periods. During the surgery I was found to have 4th grade endometriosis. The surgeon was only able to remove the uterus as my cervix is stuck to my bowel from adhesions. This explained the back and rectal pain I was having with bowel movements. He did laser some of the areas of endometriosis while doing surgery and removed some adhesions.

Two weeks after surgery I started having right side abdominal pain, this felt similar to a previous kidney stone that I had. I had a cat scan done that showed nothing, yet the pain persisted.

I was eventually given Oxycontin for the worsening pain. My surgeon suggested no more abdominal surgeries since the adhesions were some of the worst he has ever seen. I was given Lupron injections that lasted only three months before I started having severe arthritis pain. I was referred to a Rheumatologist and was tested for a multitude of diseases.

I was told that the lupron may have started the arthritis pain and to stop taking it. 17 months after my endometriosis diagnosis the pain is worse than ever. I have started Lupron injections again with the hesitation of my Rheumatologist and had my first injection 3 days ago.

I have been off of work for the past 17 months and have all but given up my nursing career. If i do have surgery again I face the possibility of a bowel resection due to the cervix being stuck to my bowel. Along with this I may need a temporary colostomy until the area heals.

I am very hesitant to have another surgery due to this reason. I am still on Oxycontin and using Percocet for breakthrough pain, which is just about every day. I am currently on several different medication for depression and anxiety since this has taken a toll on me emotionally. I am on Steroids and anti malaria medications for the arthritis and have gained 50 pounds.

I have been unable to have a sexual relationship with my husband for over a year due to the pain. I am in Endometriosis Hell and see no way out!! I see 5 different doctors thanks to this disease.


Name: Anonymous

Title: After surgery

I know exactly how you feel- I had a total hysterectomy and bowel resection last year and it has been great! I had lots of lesions and two had grown through the wall of my bowel so I didn't have much choice, though I think that made it easier!

I did get peritonitis after the surgery, which was bad luck and very painful, and my bowel function has been pretty good and getting back to normal, with a bit of trial and error with diet, but overall I feel so much better. As I am now on HRT I am loving the stable hormones!

I don't know if it will come back, all i know is that we made the best decision at the time and I am feeling heaps better now, fingers crossed it is permanent!
Good luck!

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