Wednesday, November 7, 2018

Parametrial endometriosis

Laparoscopic anatomy of the autonomic nerves of the pelvis and the concept of nerve sparing-Dr. Lemos

I finally got in to see a new Endometriosis specialist who deals with the nerves and bladder. Technically he is a urogynecologist but he knows his stuff. 

I had the initial consultation with his intern which is normal and I am happy to help teach and then he came in and told me that he is almost positive that I have Parametrial Endometriosis (LPE is a condition that reflects a more severe manifestation of endometriosis, requiring more aggressive surgery.)and is sending me for an MRI scan which I have never had for Endo considering how deep I have it, a urodynamic and cystoscopy and I am to take a rectal suppository that has a muscle relaxant (Baclofen-muscle relaxant and anti-spastic agent) It possibly works by decreasing excitatory neurotransmitter release) in it and gabapentin for the nerves. Right away I am floored because I have always asked how deep is too deep to go when dealing with endo but no one has ever been able to answer that until that day. I will need to have another surgery but I know I am in good hands. He even asked if I wanted to hold his hand while the intern examined me and told me about the surgery he is going to do (Video above) and for me to watch it. I am not sure what the PSN has to do with the issues I have no but I overheard the doctor mention something about it to his intern. It makes me wonder now what it was that he was talking about. Did the nerve grow back? Did cutting the nerve cause more damage?  

For anyone new reading this I had my first surgery in 2007 and it lasted five hours. During my surgery he also did a PSN where they sever the nerve from your uterus to the spine to stop the pain signal from coming. I was diagnosed with stage IV (DIE). He was confident he got it all and since he was a so called "Endometriosis specialist" in my city/country I believed him. I started developing pain again in my bladder and bowels three years later and he refused to help me because he said it was too complex but sent me to a baby doctor. That is what I like to call a regular gyno with very limited experience with endometriosis. In 2013 after a year long stint of medications that did not work she did surgery in which she said she couldn't get it all and called it superficial endo. Fast forward to 2014 after I wrote my original surgeon a letter he had me in his office and we discussed a radical hysterectomy. For the most part it was me pushing, he really did not want to do it but I could not go through another two decades of this run around. I knew I was going to have bowel and bladder issues for some reason after and even going in he had me believing there was nothing there and it was all in my head. Well it wasn't, it was just as deep as my first surgery including recurrence of recto vaginal endo which  he removed a large portion of my vagina to remove along with my pelvic lining in order to remove my ureters and ovary that was in bedded into my pelvic wall with dense adhesion's. Going into surgical menopause was a complete nightmare and I was refused any sort of HRT by my family doctor so I rode it out and it took four years to make me feel like myself again and even now I am not 100% right. 

The last four years I started to lose cognitive function, my reaction time is slower, and I started to get sharp pains in my urethra and vaginal area anytime my bowels moved around. I also am severely constipated which can happen after a PSN and from any of the medications that I have been put on. I have left SI joint dysfunction and hip pain along with nerve and muscle pain from pelvic floor spasms. I don't have the normal endo pain anymore this is something so different which sucks just as bad. 

I have yet to get the compound suppositories but I am supposed to take those 2-3 times a day and not stop even if I feel better.  So that is where I am at right now with this disease. I didn't think that I would be back in this situation again but it is happening and I am just happy that I have an amazing surgeon that listened to me and didn't make me feel like I was making this pain up. I am lucky to have found this doctor. 

Has anyone else had this surgery before? I could use a little more information on the outcome of your surgery.