It’s been a long journey to finally be diagnosed with Stage 4 Endometriosis. I’m 33 years old and I have been undiagnosed for at least 22 years. I started my period at 11 years old and I have always had heavy and painful periods. I was put on birth control to help minimize the pain and bleeding. Every time I would go see the gynecologist or my primary care they would tell me the pain was normal and put me on a high dose of birth control to help subside my symptoms.
Never once did anyone say they thought I had endometriosis even though we had a history of it since my mom had it. I never thought anything of it and was just told this was normal and this is how my quality of life would be. I would spend the rest of my life, in pain and for three days out of the month I would be disabled and curled up in a ball. So just a word of advice painful periods with heavy flows with blood clots is not normal so please be your own advocate and fight for yourself and get a second or third opinion.
I think the most frustrating part about all of this is we suffered with unexplained infertility for almost 7 years and then we got a suspected diagnosis of endometriosis but it was never confirmed because our physician didn't order extra tests or this surgery I just recently had. I also think finances had a role in all of this because when we were doing fertility treatments we didn’t want to waste money on any extra surgeries and we just wanted to pay for the medication for the cycles, the egg retrievals, and the numerous other things that needed to go with IVF.
Once the last IVF cycle failed our reproductive endocrinologist referred me to my surgical gynecologists. I met with her last year and she ordered an MRI and she said once the MRI results came back depending on those results I was guaranteed to have the laparoscopic surgery with her. Well the surgery got put on hold because we found our two beautiful daughters. I finally had my MRI done last month and it showed a lot of things that we weren’t aware of but it also didn’t say how bad the Endometriosis was. I went in and had my surgery two weeks ago and it was supposed to be an hour and it ended up being almost 3 hours because of the endometriosis was so severe.
The doctor stated that I was a case study for the hospital because they had never seen endometriosis this bad in a patient of my age. I was diagnosed with stage four endo and it basically means scar tissue, blood clots and endometriosis covered everything and actually tethered my ovaries, uterus, bowel, and appendix together. The surgeon was not prepared to remove my appendix so now I need to see a general surgeon before the end of the year to get my appendix removed because there’s still endometriosis on the appendix. She doesn’t want that spreading out into my uterus and ovaries again. Also, she saw that my bowel was actually twisted up by the endometriosis and she did her best to clean it up. Now I have to see gastro doctor to get a colonoscopy done to see if I need a partial removal of my bowel because it was so damaged by the endometriosis.
This may sound strange, but I’m actually happy and excited that they found something wrong with me it just sucks that it took now 22 years and nine years of infertility to figure out what is wrong with me. I’m feeling great and my incisions are healing nicely. I’m supposed to be wearing a binder on my torso for 4-6 weeks to help the insides heal properly. Let's just see how bad my next period is. Hopefully a pain free! I’ll keep you updated on my next surgery.
Warning! The below images may be disturbing to some people, but I feel it's important to share for those who may be experiencing endometriosis.
In the photo below this was midway through the surgery. You can somewhat make out my ovary on the right, but the ovary on the left is pretty mangled. You can see the surgeons tool trying to untangle the ovary and remove endo. When Ryan was reviewing the photo with the surgeon, he said "It looks like a bomb went off in there.
This image is toward the end of the procedure. Here you can clearly see both left and right ovaries.
I had four incisions.