Photo credit: Sarah Al-Hage
My journey has been long, tiring and painful. This picture above was drawn by a fellow Toronto Endosister and it describes how I spent most of my life battling this disease. The picture is powerful to me and I just had to buy it. See her work here LINK
On May 9th I went into McMcaster Hospital for a radical Hysterectomy, cystocopy and Excision surgery for Endo. I was told that I would possibly need a bowel resection and stents put in during the surgery so I was prepared. I was nervous the couple of days coming up to the surgery and started to get really sad that I would never have any more kids and that this was it. Although in my mind I was prepared for that over 5 yrs ago and I was at peace with it until a couple of days before. I started to question everything even the surgery itself. Thank God I had many Endosisters talk me through those days leading up to the surgery because I was about to back out of it last minute but finally found peace.
My 23 yrs leading up to this day consisted of tons and tons of medication as well as medications for the side effects of the medications, doctors visits, tests, surgeries and if it wasn't for my furbabies, my daughters undying love for her mother, and a husband who has stood by my side through sickness and in health for 4 yrs, and a hope inside me that one day I could go on with my life at least with minimal pain in my life I think I would have ended my life a long long time ago. I am a fighter and no matter how many obstacles have come my way including work issues and lack of understanding, friends who disappeared, and life full of suicidal thoughts I stood tall and I smiled as much as I could.
My mother drove me there and the surgery was expected to last around 3 hours. He has to allot more time just in case of complications. I remember all the people that were apart of the team and how they all had a certain job to do. My fear for my jaw being broken while tubing me became less and less. I walked with the team in the OR which I do remember doing at my last surgery but not the first one. I was lying on the table everyone asking me questions and hooking me up to all these machines and leg lift device. Right before it was lights out for me my surgeon said "You did do a bowel prep right?"... Oiy... This is what bothered me the most because no he didn't tell me I just did it because I had bowel issues. In 2007 I had my first surgery with him and it was never mentioned however in his reports it said "Discussed bowel prep with patient prior to surgery" in which he did not. I am glad I did my research and knew better.
When I came to around 3 pm I was in extraordinary pain and nothing they gave me helped. Most of the pain was vaginal so I was thinking that there was Endo found in my vaginal wall. However that was not the case. I heard the nurse mention the low dose I was given of morphine and listened while she freaked out on how it must have been a man who wrote this amount and that anyone with half a brain would know that with all I had done to me during surgery I should have been given 4 times that amount that was written down. So that being said I started to get pumped full of meds for the next 2 hours until the pain was somewhat under control. They wouldn't give me water and I was so dehydrated but gave me a popcicle in which I threw up minutes later. I was cut off from anything to eat or drink and it was horrible.
I finally got to my semi private room around 5pm. The pain was unbearable and their was tons of blood in the catheter and the information my mother obtained from the surgeon was what I was expecting to get from her LOL.. Us Endo patients know what to ask so and I feel bad and I am sorry to my mother because I said to her something like "are you kidding me you didn't ask anything else, this is all he told you?" hahah.. I was so out of it mind you but I knew before I left the hospital I would have some answers. All he told her was that there was more endometriosis than expected and a ton of scar tissue. To be honest I was shocked about having more Endo because my surgery in 2013 she said it was superficial and there wasn't much and he trained her... SCARY..
So my amazing mother stayed until my husband got there around 7:30pm dressed up in their "Endowarrior shirts" God I love them and it was so awesome to see that, it almost made me cry. I was so out of it and in pain that in a way I wanted them to go home but I know my husband wanted to be there. During this time they took out the catheter, in which I begged them not to do because I knew I wasn't ready (Gut feeling from past surgeries) Anyhow they finally went home around 8:30 and by 8:45 I was in extreme bladder pain. I could not pee not matter how I tried and trust me I have so many techniques to help me pee that work for the most part but nope not at this time. So the nurse came back in and she kind of didn't believe me and I wanted to punch her in the face. She kept leaving and finally she called a urologist who suggested emptying the bladder and trying again. So she did and it happened again. The urologist came down saw the problem and told her to put the catheter back in. I was in tears in so much pain and the thought of another catheter going back in just gave me so much anxiety as I hate them. Finally with it back in and more pain meds I started to eventually feel better once my bladder emptied into the catheter and the spasms lessened.
I did not sleep at all in the night as the pain level was at least a 7-9 out of 10. I didn't have a morphine drip like I did in 2007 I had 2 oxy pills that didn't touch the pain and then 4 hrs later 3 extra strength tylenol and a toradol (Which is similar to advil) Around 4am they told me someone was going to be sharing the room and I could care less I just wanted to sleep and for the pain to go away. This poor pregnant girl comes in and goes to the bathroom. I kid you not that girl peed like she was a race horse and I got so irritated at the length and power of that pee LOL.. I am like are you kidding me right now I can barely pee and I am so jealous right now!!..
The next day around 8 am my surgeon came in on a Saturday with his street clothes on and updated me on what he found. I was most shocked about recurring Rectovaginal Endometriosis if I am honest, I had rectal and bowel pain for a long time and didn't expect for it to come back there since its rare to recurr. He also said that there was massive adhesions which seem to grow in that same area up under my rib cage on the right side due to a laparotomy I had when I was 7. The surgery he said only lasted 2 hours and that he removed everything including endo on the bladder flap again, on the bladder and that stents were put in and removed so that my ureters wouldn't be damaged as he had to peel off the ureters from the pelvic wall because they were adhered along with my tubes and ovaries. He then told me he removed my pelvic lining due to Endo as well, which I can only assume grew back because it was so deep in the pelvic wall during my first surgery in 2007. That is all the information I got but I know they are testing the ovaries and uterus that they removed for Endo as well as Adenomyosis. He also said the cystocopy came back showing no IC but I have all the symptoms for it. He told me I could stay in the hospital another day due to the catheter issues or go home with the catheter and come back on Tuesday for it to be removed. I chose to go home, I needed my bed.
Right from the get go I felt so uncomfortable with the leg cath in and I wasn't happy. The larger one that attaches to the bed is what I use the most unless I have to shower. I just hold it and bring it with me. It seems to tug less and I don't get the feeling that it is falling out or being pulled on.
Free The Pee
So pain levels were pretty good and still are however I was so itchy down there and I assumed I had a yeast infection or a bladder infection. My mom drove me to the clinic to have the catheter removed. While there I was in so much pain down there and they said it was swollen and very red and irritated with a possible yeast infection. Good thing I bought dufflican before surgery because I had a feeling that the cystocopy was going to give me one since it did before. So they wanted a urine sample to start off with as well as peeing in the cap to see how many cc's I could get out. I could barely get half of the sample cup and she told me it was fine and that I didn't need to rush. During the 3.5 hours I was there I could only urinate 100cc at a time max 5 times with pain. The ultrasound showed I was retaining 900cc and told me I had to be recathed until the following Tuesday in which I was horrified to hear. So here I am in panic mode while they recath, although they cleaned down there and I did feel a bit better they had to clean all my incisions areas as it looks like I had a reaction to the latex catheter as well as the bandages covering the strips as I was forming blisters.
So here I am finally able to sit up after 8 days to be able to post how my surgery went. I wanted to make sure I documented as much as I could to help other people and so that I would remember. I treated the yeast infection and after 3 days I started too feel somewhat better then last night I get a call back saying that my culture came back positive for a bladder infection....ugh.So I started Cipro yesterday and I am hoping it goes away since it is a strong antibiotic and have prepared myself for the yeast infection that will surely follow this. **sigh***
**A special thanks to all my Endosisters for cheering me on and for support before, during and after you guys are simply amazing. Thank you Emma for the kind care package and Melissa I am sure my neighbour has already eaten what you sent and he is pretending they never got it HAHA!!! And all the cards I have received hoping for a speedy recovery and a special thank you to one of my high school friends Margarita who has messaged me every day checking in to see if I am okay you are an amazing person. Thank you to my sisters and family who have prayed for a speedy recovery and for all of those who have supported and understood or at least tried to understand my battle and actually cared, it means a lot****
I will update on Tuesday when hopefully this catheter comes out if not I will wait until after my urologist appt on May 31st.