Endometriosis story

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

how living with endometriosis has affected me

by Orquidia Carrion
(Lorain OH)

Hello, My name is Orquidia and I was diagnosed with Endometriosis at the Age of 18. I believe I was suffering from it much sooner than that but that is when I finally decided to really dig deep into the excruciating pain I was suffering every month during my cycle since the age of 11!

I am currently 46 years old and have had 43 operations due to this awful and very painful disease. That is 43 surgeries to deal directly with endometriosis and/or adhesions that were created from it. I have had 6 other surgeries that were indirectly created such as damage to my ureter and hernias.

I was very lucky and blessed enough that I was able to have 2 children before needing a hysterectomy at the age of 24 especially when the doctors thought I would not able to conceive. My son was only 1 and my daughter was 3 months old when I had no choice but to go thru with a hysterectomy.

I thought after the hysterectomy that I was finally going to be pain free and can lead a normal life but unfortunately that was not the case. I created live adhesions and the pain was just as bad as it was before the surgery.

The adhesions starting wrapping around my bowels and bladder. I had no choice but to have countless surgeries to clean out and separate everything. I would get some relief for a little while and then the pain would come back again.

I started passing out from the pain, standing up too quickly, and even passed out when I sneezed. The next surgery I had to separate everything again I thought it would be like the others, but this time it was much more complicated and serious. Where my ovaries were, cyst remnants had grown on each side and the adhesions were so severe that they had wrapped around the bowels, the cyst remnant that grew on the left side along with my ureter.

Everything was being strangulated and my left kidney was being damaged due to it all. My current gyn had no choice but to close me up and let me know several surgeons needed to be involved and it would be a very delicate operation.

I decided to go to the Cleveland clinic where a team of gyns, urologists, and general surgeons conducted my surgery which lasted 8 hours! I had to have a reconstruction of my left ureter, the cyst remnants were embedded really deep and the adhesions were out of control.

The recovery from this surgery was brutal and one of the worse surgeries I have ever went thru. It took me almost 3 months just to be able to get up with out feeling I had a 100 lb weight inside of me and had to have a stent going from my kidney to bladder for the same amount of time.

I wish I could say the surgeries stopped after this one but unfortunately they did not. I had several more surgeries along with hernia repairs due to the abdominal wall becoming so weakened and bowels always being embedded to my pelvic wall. My appendix was pushed lower so that had to be removed as well.

I do feel once I turned 42 that everything has slowed down and the last surgery 4 years ago is holding up.

My heart goes to all the young girls and women that have to go thru this unbearable disease. I do not wish my life experience with this disease on anyone! It truly impacts your life in every way possible! The pain takes over your life and gets in the way of everything you want to do.

Prayer and will to live for my kids is what kept getting me thru all of it. I kept thinking of the blessings I was given to be able to have 2 beautiful children and I kept fighting for them.

Us women who have to endure this pain must remain strong and continue to have a will to live. I know I do not take any day for granted because we don't know how we will feel tomorrow! God Bless you all!

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