2 Years Post Radical Hysterectomy

The last two years I can honestly say have been insane

I always thought that because I never really had huge side effects from Lupron like crazy hot flashes and joint pain things would have been different for me after my surgery. Even for the first month I felt like I had be saved from all that mess. I soon realized that was not the case and that I really feel that I literally went to hell and back. (This is not at all an exaggeration)

The best way for me to describe surgical menopause without any form of  HRT is like continuous torture of the mind, body and soul and losing hope that things will always and forever remain the way it is. I felt that things were at a stand still yet I felt at the same time things were going on continuously in fast forward speed. Every half hour I was completely taken over by hot flashes and I watched what I ate and drank in order to try to stop them but that really didn't make a difference. I felt like I wanted to scratch peoples faces off just for talking to me in a way that I took offence to. My body morphed into something similar to the Pillsbury dough boy with dark loose bags under each eye. There were days that I would look in the mirror and be in utter tears because I felt that I looked so much different.. ugly. fat and my self esteem took a huge nose dive. I could barely pull myself out of bed each morning, I stopped cooking, I stopped cleaning, and I stopped taking care of myself. I was just existing/surviving and not living. I will admit there were times I just wanted to end it all because I did not see this torture ending any time soon if ever....

I am still not sure how it happened but one day I just woke up and I didn't feel the same way physically and mentally. My mind was clear, the hot flashes were gone, and I felt happy for the first time in a long time. I would say the only thing that has not improved symptom wise is the overwhelming feeling of being tired and not having energy for anything....and bladder leakage ugh!

That being said I can look back now to where I came from at 13 yrs old and see where I am today with this disease and I can finally say that I am on the road to living... not existing but actually living. The quote  "You've seen my decent, now watch my rising" is truly perfect for me right now and where I am with my journey.

My mantra is "Still I rise" and I do just that.

Worse off having Endometriosis surgery in the first place?

Is this a thought that you have pondered some time since having surgery for Endometriosis? We always here that the "Gold Standard" is the best way to treat it but at what cost? What have you lost or what has changed since making that choice to have your first Endo surgery? This is something that I think about a lot. I suffered greatly long before the internet and I did have Stage IV (DIE) with Rectovaginal and bladder disease and I still question if I made the right choice after all this time.

For me I went to over 40+ doctors in a 14 yr time frame undergoing hundreds and hundreds of tests, appointments, exams etc. I suffered greatly in the hands the of the medical care system but how were they to know when they couldn't see anything. For me my first surgery was for answers. I couldn't handle another doctor saying to me that he didn't know and to go along and just try this anti-depressant this time....

Before surgery I was around 135-140 (Now 165) and I had chronic nausea for 2 yrs and couldn't go in the sun, reflux which made it hard to eat or drink anything along with migraines lasting over 100 hours which would end me up in the ER each time as nothing could help stop the pain and those started at 14. The rectal pain I would get wasn't just on my "Ladies days" it was at any given time and they would come out of no where. Days before my period I would evacuate my bowels which felt nice as I was always constipated and in pain because of it however that nice feeling didn't last long because as soon as the blood came so did the numbness, pain, vomiting and constipation again. It wasn't until the 7th day or so that I could have a bowel movement and then the pain would subside and same with the symptoms. The bladder issues I chalked up to child birth as it seemed to get worse when I was pregnant. I was diagnosed with Fibromyalgia at 17 yrs old and I always felt that I didn't have it and kept pursuing answers that would make sense.

Where would I be right now if I had done nothing and left it? I am pretty confused because I we are damned if we do and damned if we don't. We just end up with a different set of problems which some times end up worse than the original pain to begin with. If I am honest I can't even remember my endo pain anymore. I know it was brutal and I know that I suffered a lot but some days I wish I had that life back and some days I don't. It really is unfair.

What do you think? Do you think you should have just left it? Do you think it has made things worse? When will we be able to detect this disease before being opened up and also be able to manage the Endo without being cut open?

Post-Op Hysterectomy & Endo Excision update

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.

Many Thanks to Dr. Redwine

At least for the last 7 yrs I have researched my face off trying to get to the facts of Endometriosis. I have heard so many wild stories such as; Getting pregnant will cure Endometriosis, Surgery will cure Endometriosis, Mirena causes Endometriosis, that there was this so called Stage 5 Endometriosis, that diet, herbal supplements, and Lupron will stop the lesions to grow.

I was not only getting this information online but actual doctors and surgeons and I am the type of person that wants to know everything and since I went 14 yrs undiagnosed I was going to find out the facts so that I could help others and hopefully they will not have to suffer as long as I did.

This man is my Hero in all sense of the word. He gives you the information straight no sugar coating it and since he has researched and documented from over 3000 surgeries for the last 30 yrs I really think its safe to say that whatever this man says about this disease is FACT.

I thought I had most of the facts from researching but there were a couple that stumped me so when I heard he retired and I found him on Facebook answering questions it made me so excited!! I really was. I know that sounds weird but I am a huge fan of his.

So I threw out all the questions that would come up in mind or that others wanted answers on and on this part of my blog http://endendoforever.blogspot.ca/p/endometriosis-facts.html  You will see some of the questions asked. He is quite the funny man if you ask me :)

Sad to say though that someone alerted Facebook and had his Facebook site shut down for no reason. He did nothing wrong. This one act of one person could have shut the doors on a walking information source that could change the lives of many women and to educate the doctors that still are behind the times when trying to treat their patients with this disease. He said he won't be back on there as he was hurt I think and why shouldn't he be? He is retired and he spends his retirement helping people like me in pain and gives us the facts so that we can get the help.

If anything this man needs some kind of humanitarian award for all the work he has done for us women when the medical field blatantly turns their back to us and refuses to help us with meds, surgeries and information.

So from all the Endosisters around the world THANK YOU!