Endometriosis Support Group

Endometriosis is a common medical condition where the tissue lining the uterus is found outside of the uterus, typically affecting other organs in the pelvis. The condition can lead to serious health problems, primarily pain and infertility. A major symptom of endometriosis is pain, mostly in the lower abdomen, lower back, and pelvic area.

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Stage 5 endometriosis in bladder and rectum - help

AmyMichelle
AmyMichelle

hello everyone - 


this is my first time in an online support group but I'm at my wits end and will try anything!!


to begin, I'm 41 years old and was diagnosed with Crohn's disease when I was 26.  Since then I have had bouts of horrific pain which have intensified the older I get.  Throughout all of these years they blamed the pain and chronic UTIs on the Crohns but I always felt that there was something else going on.


Finally this summer during one of my hospitalization a I ended up requiring a partial bladder resection.  During this resection the surgeon found endometrial tumors that have gone all the way through my bladder wall.  2 days ago they also found significant disease throughout my rectum and colon.


I am in the worst pain of my life every hour of every day and I am hoping and praying that someone may have some advice/guidance/anything that could help me to get through these next frightening steps....I will take and be thankful for any help I can get!!


Thank you in advance!!!

LawyerGrace
LawyerGrace
Ohhh wow, that is a bummer. We share some symptoms, I including lesions in rectum and colon. During the last 4 years I've tried a variety of meds, PT, diet, laps - no real changes other than pain gets worse over time. By happenstance my pain clinic Dr moved out of state and her replacement was a pelvic pain specialist. He studied my MRI and reports from my latest laparoscopy and said, I bet you'd get a lot of recovery from a hypo gastric plexus block. Apparently a lot of the nerves that run to the colon/rectum area, along with any other nerve paths often impacted by endo, are clustered in the hypo gastric plexus. At this point I would've tried anything, but especially considering the surgeon was 95% confident these were the only lesions remaining after my lap, yet the pain didn't improve, trying to target this area seemed like a no-brainer. Long story short - it works!! So far, about 80% reduction in daily pain. Think about asking your Dr. about it
MarciaMG
MarciaMG
I suffered with endometriosis and infertility until I was 34 years old, 12 years. At 34, I was diagnosed with Myasthenia Gravis, an autoimmune disease which causes muscle weakness, fatigue and breathing difficulties. By this time, my husband and I had already adopted a beautiful baby girl and we were a family. I decided that I had enough of my endometriosis and had a complete hysterectomy. I knew it was time. I had no profound psychological problems. I was happy because I no longer had to endure the painful periods, painful bowel movements, and all those GYN exams. My pathology report showed severe adhesions, endometriosis, and adenomyosis(endomtriosis in uterine wall). Your endometriosis could be microscopic like mine was. You need to decide how you want to live and I'm just saying, this is just one choice.
AmyMichelle
AmyMichelle
Thank you both so much for your responses! And to start, I had mistakenly wrote that mine was stage 5...I guess there is no such thing as stage 5 - mine is stage 4.
I met with the director of gyn surgery at mass general hospital and he explained the surgery i will need and I'm pretty overwhelmed. He determined that lupron will not work so they will be doing a total hysterectomy as well as a anterior resection of the bowel and stents in my ureters. He said that I have frozen pelvis? I dad never even heard of that term! I'm meeting with the colorectal surgeon this month and they want to do the surgery in February.
I am so scared as this will leave me with a temp colostomy, catheters and drains. I am blessed to have 2 bio children and 3 stepchildren. I'm afraid that this will be scary for them but I don't think I can carry on with this type of pain. The pain is now in my legs and I am not even sleeping at night anymore.
I sound like the worst complainer and i apologize! I feel like I'm being punished for something - I just don't know what!
Thank you for your input re: the hysterectomy and I'm going to ask about the nerve block later today when I speak with my doctor.
I hope that both of you have a new year filled with health and reduced pain!
LawyerGrace
LawyerGrace
Wow, that is a huge surgery. And who knows it might be the best option for you, but... Surgeons like to do surgery, keep that in mind. The nerve block is far and away less invasive.

Whatever you decide to do, good luck and stay positive!