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 back to see you 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.
Your letter is so strikingly similar to my life, & what I've been going through since I was around 14 years old too! I'm also 36 years old, & have been made to feel like I'm just a crazy, drug-seeking hypochondriac that only wants attention... as if it's fun to be in constant, severe pain, & have to BEG every Dr, Specialist, & surgeon I see for help! We are forced to plead for help from our doctors, not only for painful tests, severely painful surgeries with accompanying recoveries, & embarrassing, uncomfortable, and sometimes downright excruciating exams/diagnostic tests, but we have to be insistent & "the squeaky wheel" just to get our health care providers to believe us! Just because it doesn't show up on the outside of our bodies doesn't mean it's not horrible on the inside, as my own medical history shows very clearly (as it certainly seems to show in your case as well, Angela Wice!)
I'm grateful to you for having the courage to write this letter to your doctor(s), & for sharing it with all of us who are suffering with you! I will share it with my family & friends, & I know it will help spread the truth & healing!
Thanks again, Angela, & I will hope, wish, & pray that you will finally get to the right Doctors & Surgeons who will be able to help you with the best possible treatments! Please feel free to send me emails or Facebook messages... We have a lot in common, & I hope that maybe some of my history &/or what I'm currently going through may be helpful to you. :-)
Thank you so much for your kind words and sharing it. It means a lot to me. It is so unfair how we are treated and I think for the most part the mental aspect is what has taken a toll on me the most. Me feeling like I am some weirdo who just wants attention. My own family I feel has done this to me however I am sure if they could understand they would try harder to make me feel less of a freak than they already do. Thanks again for sharing we certainly do share a lot of the same journey I will for sure keep in touch :)ReplyDelete
You're absolutely right, Angela! That's the unfortunate truth; that we are made to feel like we are crazy...That it's all in our heads, that we just want attention, or drugs, or all of the above, when nothing could be further from the truth! All we want is real care from our doctors! For them to take a true interest in our symptoms, and to give us the best possible treatments to give us at least some quality of life. It's so incredibly frustrating to hear, "You're test results are negative; you're fine. See you in a year for a check up." Just because one test comes back negative does NOT mean there's nothing wrong; it merely means they haven't done the right tests, exams, or exploratory/diagnostic surgery yet, & they haven't seen the problem with their own eyes! You can bet that if they were experiencing the same severe pain & other horrible symptoms that we deal with every single day, they would be singing a very different tune!Delete
I totally relate to what you said about your family members that make you feel like a weirdo freak... If only there was a way to let people feel what we are feeling, just for one day, so they could really understand what we're dealing with! There'd be a lot more people studying Endometriosis & searching for treatments then! Sometimes I think it makes people feel uncomfortable seeing me suffer, so they subconsciously avoid seeing me so they don't have to endure watching me suffer, without being able to take the pain away. I know it's hard on them, but it still makes me feel alone sometimes, stranded on Endometriosis Island! However, I am extremely fortunate to have such a wonderfully loving & supportive husband, who is work me through every moment... With him by my side & a positive attitude, I know I will be OK no matter what! :-D
If you are able to get to California for surgery, please let me know & I cam recommend some wonderful Dr's that may be able to help you!
I hope you're having a good day, Angela! Talking to you is definitely helping me! With all of our combined experiences, between us & all the other strong women on here who have read & responded to your inspiring posts, perhaps we can become advocates for better care for all women like us, who are suffering far greater than we have to!
Thank you so much for your kind words it means a lot :)Delete
Oh sweetie I feel your pain and frustration. I was just denied by the out-of-country committe when my last doctor tried to get me approved to go to Atlanta. I was told that there is a Doctor in Ottawa & a new doctor in Edmonton who does the same thing as the doctors in Atlanta. I am now waiting for my 8th surgery in 7 years with the doc in Edmonton. She says she can remove all the Endo, but I'm not getting my hopes up.ReplyDelete
I really hope you and all the women who struggle daily with this awful disease can finally be heard and get the treatment we are getting denied.
Thank you. It is not fair that we suffer this way. It becomes more of a mental problem later because of the rejection, lack of empathy and the feeling that you are completely alone.ReplyDelete
Man, oh man do I feel your pain and frustration. First and only 5 years of marriage I had 8 surgeries for Endometriosis and lysis of adhesions. Then, another for hysterectomy in 1994 (Total Hysterectomy) after begging husband and doc to just let me get the hysterectomy...by then age 24, doc told my x husband, "It has come down to quality of life or quantity of life, for your wife, and she has chosen quality and that means a total hysterectomy." Husband signed the paper otherwise I would still be having surgery after surgery. I did have one more surgery after that in 2006 for partial colectomy (from adhesions, they had to peel small bowel off wall and resect 1/2 my colon they saved to my rectum) Barely made it home, after 7 WEEKS in the hospital. I am still suffering with adhesions and HBP, fibromyalgia, degenerative arthritis-won't take HRT) I had planned on being gone by now as doc in 1994 who did hystectomy said I'd last til age 43 and I am 47 now, but on borrowed time. Adhesions are back with a vengence, and in pain everyday from arthritis and fibromyalgia. I am single, have been doing all of this research and seeing docs I picked for myself since 1995. I have only found one doc here where I live that deals with Endo. properly. He also does Trigger Point Therapy which helps with Adhesions. However, he does not take my insurance, I can only go to him for the Trigger Point Therapy. If we aren't mentally screwed up before hand, after you go through fighting a battle you will never win....you get very tired, sometimes confused, very depressed and anxious (don't know from day to day how you'll feel). They were telling me years ago that I was drug seeking and/or it's all in your head. We can't find anything wrong. They need to really read their notes!!!!! And follow up with the patient AFTER reading their HISTORY - their WHOLE HISTORY, I keep mine with me so there are not supposed to be any mess up's at my colon surgery but, here almost 7 years later, they didn't listen or read my history. I'm so sad for you but, happy at the same time to have read and HEARD of someone going through just about the same as me.. I had stage IV also. Blessings to you hon. and keep fighting! I keep telling these young girls to be LOUD, be your own ADVOCATE, and LEARN as much as you can. Thank you for being you and being brave. (((HUGS))) Here's to (cheers) pain-free days, although few and far between.ReplyDelete
I am 27 and i have been suffering with endometriosis since i was 12 years old in Jamaica. I read your story and felt every word. I was made to feel that way but thank God I was extremely aggressive and so was my mother. We moved from Jamaica to New York and in a nutshell, I had to do a Brian MRI, nerve test, I was told that the pain was not real and that I may just need my pain nerves cut. I suffered for years after really getting some help. And even this doctor didn't really help fully, because she didn't believe i had endometriosis, he just wanted to cut my nerves, but when she looked inside me my whole left side was completely taken over with endometriosis (i always had the worse pain in the left side ever since i was 12 years old). she removed what she could and urged me to have a baby. As if that's so easy. just have a baby!! I was always in pain after the surgery anyway and long story short, my rectum and navel became invaded by endometriosis. I am currently seeing Dr. Levene at NYU. He performed an MRI of the Pelvis, abdomen and chest (because i had chest pains during periods) he saw all the endo build up in my abdomen and after the colonoscopy they saw one in my rectum (it is so painful i cant sit sometimes) . I bleed through my navel every month as well. I am going in for surgery on Monday 3/10 to remove my navel and reconstruct another, remove all the endo including my appendix and a rectal resection...and i may need the bag ... I have learnt to lean on God during all this. if there is any advice i can give anyone is to stop eating processed food and only eat free range grace fed beef and organic meats. Endo is an estrogen dominant illness, all these meats have been injected with this hormone to become plump and fat and then you eat it and feed the endo. No more SOY!! soy is estrogen!! read everything you eat and avoid soy. avoid gluten as well. it irritates the GI. i am learning all this now guys. I will practice this going forward and with Gods blessings i know and believe i will recover from this and really live a life that is full and free!! God id great pp and He can hel and prosper us. He sees our pain and wants us to turn to him. Look at Tia Mowry who ha endo and she changed her lifestyle and built a strong firm faith in Christ. This is essential. I have been through some low lows and I believe that In Jesus name i am entering into a new and beautiful phase of my life not because of this surgery but because now more than ever i have a firm trust in God and He will not let me down, he will hold me in His right hand and be my peace and comfort. I love you ladies and i Pray this helped someone :)