A narrative letter written from a patient to her surgeon.
To Dr. X
I decided to write this letter as I am very angry and thankful at the same time with you. In 2007 I came to you and within seconds the rectovaginal cyst was found that was missed for 12 yrs. I suffered from the age of 13 yrs. old and was made to feel like I was losing my mind and tossed so many meds and turned away by over 40+ doctors. When you booked surgery 3 months later I was ecstatic because finally I would get some answers although I knew from all my research I had done for 14 yrs. at that time that I had stage IV.
I want to thank you for the job that you did as it was a successful surgery for 2 yrs. and you did do a lot of work on me, however the treatment I received from 2010-2012 was unreal. The first couple of times I came to see you after I had developed PID I told you that I was having a lot of bowel and bladder pain and you told me I was just trying to find a problem when there was no problem. This went on for about a year and with me leaving crying because you weren’t even listening to what I was saying. Around 2012 you finally did an ultrasound and found fluid in the cul-de-sac and told me to go on Lupron and if I wasn’t in any more pain and the fluid was gone it was Endo and you would operate and if it wasn’t than you wouldn’t and that it wasn’t Endo.
Well I did the Lupron as requested and no I wasn’t having sex because it still hurt and yes I was still in pain with my bladder and bowels yet you didn’t do another ultrasound you just said “It’s not Endo its neuropathic pain syndrome” also mentioned something about me being too high risk and that there was too much damage done from the Endo and the surgery in 2007 you would not operate. What you made me feel that day was so wrong. I was put through so much mental anguish as well as suffering and you were not willing to treat me unless it was with Lupron and that went on for about 2 yrs.
You knew I was going to Pain Clinic and you sent me to a “baby doctor” either because you didn’t believe me or because you just didn’t care. You wanted me not to come back and you did not want to help me. I will have you know that after being subjected to 3 different types of meds and peeing 60x a day and using enemas 3 times a week she finally operated on me and yes there was "Endo" on my bladder and in the cul-de-sac and also carbon residue on the bladder flap from the laser being used in 2007. There was also scar tissue wrapped around my bowels stuck to my laparotomy scar, as well as it was on my ovary, tubes and ureters.
So that being said I had to be operated on by someone who didn’t have the skill and she “got all the endo she could” She left Endo on my bladder, and could not remove the ovary, tube and ureter embedded into the pelvic wall by dense adhesions even though I had told her and we agreed upon that if it became too complicated she would open me up and remove it all. Guess what? That didn’t happen and I am now still suffering.
At this point in my journey I have a top surgeon who will not operate, a surgeon who does not understand Endometriosis the way someone should if they were being sent to them for that specific reason and a GP that knows nothing about Endometriosis.
I have researched for 23 yrs. and with that I have had to push to even get to where I am because no doctors in Canada will help you with this disease. You are the one that should be the one standing up for us but you don’t you throw us under the bus and make us feel like it’s all in our heads and that we will not die from it. Do you know what this disease has done for my quality of life over the last 23 yrs.? Do you know how much I have been let down by doctors over that time and how humiliated some of them made me feel? I have no doctor, no surgeon and no options and I am suffering every single day.
I was denied by Ohip for out of country surgery twice because I don’t have a specialist that will sign off on it. Considering the history of you and that U.S surgeon have, my chances of you signing off on it are slim next to none and I need this surgery. I live in a country where health care is free and I understand all the politics that are involved and I understand all that you do for people with Endometriosis and you are overworked and underpaid but why not stand up for us and tell the Ministry of Health that we just don’t have the proper tools and enough surgeons to do this type of surgery? You are one person you can’t do it all and in the end you make patients feel like they are making up the pain and that it’s all in their heads.
If Endometriosis is your passion then why are you not standing up for us? Why let us suffer?
You are the only person that can make this surgery happen in Atlanta and I am begging you to please write me a letter stating that my surgery can’t be done here because it’s too complicated. Please do not make me suffer another year of this I can’t go on another 23 yrs. of this and either can my family.
Only you have the power to change how things work in the Country your voice matters and I need this and so do so many other woman. I have nowhere to go and I can’t be operated on again by someone that doesn’t know what they are doing. So please consider this as you are my last option or I will have to pay out of pocket for a much needed surgery with money I just don’t have.