Endometriosis, Serve pain, and more problems

I had my 1st surgery when I was 25 years old and it was the Laparoscopic procedure that determines that I had a full-blown case of Endometriosis. Then after my diagnosis I had to have a complete surgery because my case was to bad for the doctors to remove it through the Laparoscopic opening. The doctors had to do some serious scraping inside to try and clean it out. After that I went on these shots that were called the Demo Provera, which was for 12 months. This takes the monthly menstruation away during that time. These shots did nothing for my situation because when I was taken off of the shots. The problem just came right back. So, at that point I was given birth control pills to do the same thing which was to stop the monthly periods from happening. Once I was removed from the birth control pills because back then you could only take them for a minimum of 6 months. After coming off the pills I continued to have heavy bleeding and excruciating pain. About 5 years later I had to have the surgery again, and again. Which was more Laparoscopic procedures and more surgeries for scraping my insides meaning inside my abdomen. I didn't want to have a hysterectomy because I desperately wanted to get married and have a child one day. So, I suffered through all the years that came with this same pain along with the heavy monthly periods. But by the time I reached 35 years old. I was finally able to try get married and do the IVF known as In-vitro Fertilization. And right after that procedure my ovaries had become OHSS, which means Ovarian Hyper stimulation Syndrome. So, there was an enormous Infection going on that the doctors didn't know about. And it didn't show up until I had a fever of 104 and pain out of this world literally. I was rushed to the hospital and was told my heart rate was extremely. After that the doctors had discovered it was an infections which lead to a emergency partial Hysterectomy. Then several years later I was told that I had Endometriosis in my small intestines. So, the doctors removed it but the bleeding was severe after that procedure so I had to then get the 1st ileostomy with the stoma bag. And after having it for 11 months after that the doctors reversed it back to normal by removing the bag. Only after 6 months later I developed an internal rupture. And had feces leaking inside of my intestines which damages more of your good bowel. So, I had to get this same procedure all over again and have more intestines removed that gets damaged when this occurs. I waited another 9 months and it was reversed back to normal again. Meanwhile each time that this procedure took place I was on a special diet. Once the bag was removed the special diet was temporary. About 6 months of going without the stoma I could go back to my regular way of eating the doctors said as long as I could digest the food that I was eating. Then again after another 1 1/2 my intestines ruptured again. And this was the 3rd time that I had to get this same procedure all over again. Only this time I developed an internal infection, which the doctors said, can just happen after this type of surgery. So, my body had become a little toxic and it was up to the antibiotics to work. Or I would die at that point. Once I recovered from all that. I had the final stoma for about 1 year. Then it was reversed back to normal. Now it's been 3 years and I'm stoma free as I would say. So, all of these surgeries happened within a 7-8 year period. I was to sick and weak to work at all at any job and had lost a lot of weight from my body going through all of this. But I have serve pain in my abdomen daily if I try to do thing that are normal like, cleaning the house, cooking & lifting laundry or even grocery bags. This has been a rough 25 years of surgeries and pain from endometriosis, tummy tuck and multiple ileostomies. When I add up all the Laparoscopic procedures and the surgeries that I have had the number comes to about 15 now. This completely amazes me because I even had a tummy tuck to get some pain relief & the scars before all of the colon surgery nightmares began. Now I need help loosing weight so, if anyone has any helpful suggestions I’m all for it. Because regular exercise is not physically possible anymore due to all the pain that I have when I try to do the normal walking out doors, standing while cooking even. Being on my feet more than 15 minutes at a time causes pain. Even carrying groceries into the house. My physical trials and tribulation of my health have been an absolute nightmare. I survived all of this because I almost died at least 4 times throughout my life undergoing all of these different medical procedures. I told the surgical nurse at the hospital that my life is no longer normal anymore because I cannot function like I use to. She told me that I’m alive and now I have a new normal. And I say if you want to call it that.

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  • You should join endometriosis Uk and post this, I'm part of it since I have endo and am awaiting my first lap, you'll get better answers there.

    I can give you a few tips for pain, I do Pelvic Floor physiotherapy which has helped the leg pain and pelvic pain a bit because I developed pelvic floor dysfunction and I'm only 17 and the pelvic floor symptoms started at about 13 or 14 and my first period was when I was 8. What I'm trying to say is Pelvic Floor Dysfunction is common with endo because of your pain making your abdomen clench up over and over until it tenses up your pelvic floor and it can start like endo really early.

    Can you go on another pill? I would ask for a progesterone only pill.

    I've heard a few ladies try the endo diet, I can't because of allergies but on endo Uk they swear by it.

  • Sadly no words of wisdom to share but thank you for sharing your story. Really been a hard journey for you one of the hardest I've heard on here. Praying things get better for you soon, God bless :)