When I think of my insides I think of this picture. It best describes what my insides were like when first diagnosed with Stage IV Endometriosis in 2007 and most likely what it looked like this time around 8 yrs later.
When I had surgery in 2007 I had a lot of surgery done and it lasted 5 hours. I felt very confident in my surgeon and I was too naive or uneducated to think it would grow back since I had the best surgeon. At that time I had a PSN (Presacral Neurectomy) done along with deep excision of Endo in the pelvic wall, removal of a rectovaginal cyst, removal of a 5 cm Endometrioma, tons of scar tissue and endo removal from the bladder and sigmoid colon. It was everywhere.
When I had surgery in 2013 after battling for someone to listen to me for 3 yrs and being treated as a guinea pig I finally had another surgeon that would operate since the first one said I was too high risk, that it was neuropathic pain syndrome not Endo, and told me if Lupron didn't work it wasn't Endo. Well she went in and before the surgery I didn't feel the confidence like I had with the prior surgeon, however she was at a pain clinic and trained by my surgeon so in reality what could go wrong right? Before I went under I had signed off on a hysterectomy if things got to complicated. I woke up feeling like she did nothing and maybe I was losing my mind because I was told by her intern that it was only superficial and that the right ovary, tube and ureter were stuck with dense adhesions into the pelvic wall and that she "Got all she could" leaving endo on the bladder. So for me I was thinking "Well maybe the Marvelon worked for those 8 yrs and maybe it suppressed the Endo and that it maybe was Neuropathic even if the nerve meds did not help. I was peeing 60x or more a day before this surgery and having to use an enema 3x a week in order to have a bowel movement. I figured that there wasn't really much and removing the carbon residue from the bladder flap seemed to have helped the bladder and removing the adhesions helped my bowels although I still had rectal pain.
Fast forward to May of this year when my first surgeon agreed to excise all the Endo and do a radical hysterectomy I honestly was taken back to learn what had been done and how so very wrong I was with what the surgeon before said. I think that is why it has taken me so long to write because I just can't believe it. I woke up in severe pain and my catheter was filled with blood for 8 hours. Around 5 hours later they removed the catheter in which I begged them not to and then within mins I was in excruciating pain because I could not pee. That went on for about 30min before the nurse would put the catheter in just to drain my bladder. Another half hour later I couldn't go again and I begged for them to please put it back in, and finally after phone calls to the urologist they did and I went home with it the following day. I went back to the clinic after 3 days to see if I could have it removed but I still could not go and I was having major spasms still. During that time I asked them to look at my stomach as I had blisters everywhere which happened to be from the latex bandage they used over the strips. I still am scarred from them unfortunately. So since I couldn't go I was sent home with the catheter for another 8 days. It was horrible but it most likely was for a reason because I would never have stayed in bed to recover. I was told to come off the bladder meds (Myrbetriq) by my urologist about 2 weeks later so I did and sadly enough my bladder symptoms continue. I was told to monitor them once a month for 3 months to see what the input and output is.
So in June I went to my post op appointment only to be in shock with what was found. There were multiple small fibroids, a cervical polyp (Benign), rectovaginal Endo, right ureteosacral ligament nodule, deep infiltrating endo of the sigmoid colon, deep bladder Endo and massive scar tissue on the right side. I had to have my pelvic lining removed I assume because of the deep infiltrating endo as well as the ureters that were embedded into the pelvic wall, when I asked him if it was because of the ureters he said yes. I also an upper vaginectomy to remove the Rectovaginal nodule. I had focal Endometriosis in left fallopian tube, left ovary as well as the cervix. I had a modified radical hysterectomy but I am not quite sure what modified means unless it has to do with the vaginectomy that was done. He had put stents in so that my ureters wouldn't be damaged and that is most likely why I was bleeding blood for that long also another cystoscopy was done to rule out IC (Interstitial Cystitis). He also did a Enterolysis to make sure there wasn't a bowel obstruction as I have massive scar tissue that always sticks to my 3 inch laparotomy scar from when I had a bowel resection when I was 7 yrs old. I was actually shocked that I didn't have Adenomyosis to be quite honest but this explains it all from painful bowel movements, sex, pelvic pain and urination.
So that being said with all that was found and what was missed in the last couple of years I can't express to you enough that finding the best top surgeon that excises to operate. Make it count. Mine is the best in Canada however I still feel that if rectovaginal Endo, sigmoid, and bladder recurred again either I have aggressive Endo or that it was not properly excised in 2007. He said it grew back and I am not sure what to believe as I think its quite possible that he didn't remove it all the first time and it kept on growing. I know that the endo went down to the nerves so I am thinking in 2007 maybe he was afraid to cause more damage and go deeper. I am also believing now that I do indeed have Neuropathic pain syndrome because of damage from the Endo, something I would never have believed before.