As long as I can remember I have always had bowel pain and would always find myself running to the bathroom and often. At 15 yrs old being diagnosed with IBS with all the pain I was having left me stumped. A disease that clearly a lot of people had did not correlate with the symptoms I had which were sharp stabbing rectal pains any time of the month out of no where that would leave me breathless, total evacuation of my bowels a day before my period and complete constipation for at least 6 days while on my period and until I actually could go after the 6 days the pain was more intense. I never believed the IBS diagnoses and I am happy I didn't as it made me keep searching for answers as to what was wrong with me. I was finally diagnosed with Stage IV Recto-Vaginal Endometriosis (DIE) in June 2007 at 27 yrs old. 12 yrs of unnecessary agony!
For the first 2 yrs it was amazing the pain disappeared and I didn't have the constipation as bad as I had prior to the surgery. However a bout of PID caused things to change really quickly and things started to go downhill. My bladder would spasm as well as the urethra, I would be peeing over 20x a day with severe pain. I would get to the toilet and nothing would come out, then little dribbles would come out then I would have to walk around for 10 mins to finally go again but I would always feel like there was more there but it wasn't coming out. By the time I had my second surgery in Feb 2013 I was peeing over 60x day at at times peeing myself because I would either have pain or no sensation to pee at all.
The bowels that was a different story. I would go over a week not being able to go and the pain was unreal so I started to do enemas. Eventually by the time of my surgery I was doing them 3 times a week just to be able to function.
During my surgery they found carbon residue on my bladder flap which was caused by the use of laser. When talking to Dr. Redwine he said that carbon residue acts as a splinter so you can imagine how much that would hurt and what havoc it could cause. I also had a partial bowel obstruction from scar tissue that seems to want to attach itself to a 3 inch scar I have from a surgery from when I was 7 yrs old on my bowels. My ureter was also tangled up in scar tissue and the other ureter still embedded along with the ovary into the pelvic wall.
So that being said I feel about 70% better because I am not having to use enemas every day nor am I peeing 60x a day at this time, however the pain and problems are still there and they are causing more problems then the actual Endo pain itself. I get so frustrated and wish that this pain would just stop already. All I do is focus on it because it has become a big part of my life that can't just be ignored.
So my question now is besides physiotherapy, ball rolling, surgery and pain meds, is there anything that can be done for my bowels, ureters and bladder? Will I always suffer like this?