Hysterectomy Post Op Update

It is almost 3 weeks since my total hysterectomy & BSO along with excision of rectovaginal Endo, scar tissue as well as a bladder resection and thought that I should update everyone as to what I am feeling, how I am recovering and most of all do I have closure. 

I have to admit the first 11 days were brutal with the catheter and the pain after from the urethra was not a pleasant feeling either. I still feel some urethral pain when I pee so I am hoping that is just because my body needs time to recover from all that was done. I see my urologist on Friday to update on the med I am taking however I find it weird that he wanted me to start the med a month before my surgery and see him 3 weeks post op. How do I really know what is working? Either way I am not sure if that pill is even helping much and should probably stop taking it and see. 

I am still taking lax-a-day instead of the stool softener more out of fear. I think I will continue for another week then stop. I can only hope there is not sharp rectal pain but time will tell.

I started menopausal symptoms right away however I could be confused about the side effects of the Cipro as some of the symptoms were the same. For the first week I was getting cold flashes. I did not like those one bit and one time while waiting to pick up my daughter I thought I was having an allergic reaction but it was a hot flash and that was scary. Some of my symptoms overlap with Fibro so I can't always be certain what is causing what. I was getting headaches for the most part which I think was because I stopped taking the flexeril for my jaw and must have been clenching down so hard from the pain in my sleep. So I took it last night with a sleeping pill and my jaw is in less pain thank god. I have lost my appetite however it might be that I am busy running around. 

To be honest since the catheter came out I have been running around all over the place trying not to focus on Endometriosis and it has helped. I feel the closure I was looking for mentally. I know I made the right decision and I am happy about that. 

Free The Pee #Endo #Catheter #Bladder

If you have never heard this chant "FREE THE PEE" then you haven't seen Bridge to Terabithia. It is a great movie as well as an inside joke with my family. 

On May 9th I had surgery and I knew there was going to be bladder work done as it wasn't removed from the last surgeon so it continued to grow and wreak havoc. My fear was the catheter being pulled out too early and from experience the catheter has been the norm for me since the birth of my daughter in 2003. 

When I had her they used an epidural and it froze my bladder. I had just pushed out a 7.1lb baby and I was swollen and sore along with a yeast infection. The pain was unreal and I tried everything to go but I couldn't so they had to catheter me. So after 9 nurses held me down and me having a panic attack it was in. That day I will never forget nor did I think it would happen again. 

June 2007 I had my first surgery for Endo with a Top Specialist. It was 5 hours long and it was deep, it was everywhere and there was damage. When I woke up the catheter was out, after recovering for about 30 mins after awakening I had to pee and I couldn't pee. They lifted me up on to a bed pan and I could not go for the life of me. I begged and pleaded for them to put the catheter back in but they were ignoring me like I was making up the pain not to mention I just had a major surgery. I ended up having to stay in the hospital which was horrible however the catheter came out the next day and although I could never full empty my bladder I told them this is normal for me and to let me go home. 

Over the years my bladder started to get really bad. At one point I was peeing 60x a day, it was so painful, and there would be times I would vomit from the pain or the urine would come out with no sensation. It took me 3 yrs to find a surgeon to help me and that was someone from a pain clinic that was not an endo specalist and after a year of 3 strong meds to finally convince her to operate. 

In Feb 2013 I had surgery again with the pain clinic gyno. The deal was to remove the endo and scar tissue and if there were any complications remove it all and there would be a possibility of an open surgery. This surgeon caused me so much panic but I had no other options. The top specialist wouldn't operate a top urologist wouldn't give me meds and said it was from Endo and not IC so I was left with only this option. She got in there removed endo from the cul-de-sac and carbon residue from the laser used in 2007 off the bladder flap, but things got too complicated and she left endo on the bladder, nicked my uterus and closed me up. When I came to the only pain I had was my vagina. I was in shock and listening to what happened during the surgery it made sense to have no pain, she said the Endo was superficial and it was complicated however this is something we talked about. Long story short I was not in pain I could pee and she did a horrible needless surgery. 

Finally I was fed up. The pain was just too much and I wrote a letter to my First surgeon (see here) on Dec 24th 2013. In Jan I got a call from his office him wanting to see me about a misunderstanding. I know what I heard and I did the Lupron like he told me to which did nothing and I was disregarded and told that my pain was pretty much not real that it was Phantom pain (Neuropathic pain syndrome). I went to the appointment and this time it was different. I didn't care any more I wanted it all out and he was doing it and it was going to be done right. Thank God his intern was my advocate because I broke down and tears and I was just done mentally and physically from all of this. I ended up losing my job later and getting a call for surgery.

On May 9th I had a radical Hysterectomy removing everything as well as bladder resection, stents in and taken out during surgery, My ureters had to be peeled off the pelvic wall and I think the only way to do this was to remove the pelvic lining but that is something that I will ask in my follow up appointment. He did a cystocopy as well as rectovaginal nodule resectioning and scar tissue removal. It was only 2 hours but it was extensive and I woke up in utter pain and not medicated properly. I had blood in the catheter for about 5 hours and was sent to a room after 2 hours in recovery around 5pm. At around 8:30pm they removed the catheter after many pleads to not do it yet. I felt my bladder having spasms and I knew I wouldn't be able to pee not to mention my entire right side of my pelvis was numb. She did it any ways. After an hour I could feel the pain starting and the sensation to have to pee but nothing came out. I told her this and she told me to keep trying and get back to her. After a half an hour of all the tricks I have used in the past to pee nothing helped. She called the urologist after 1.5 hours and he told her to put the cath in and remove the urine and get me to try again and if I couldn't go to put the cath back in until the following day. So another 10 mins I felt the pain again this time more intense and the urologist came in and told her to cath me. Finally at 10pm I was cathed and given more pain meds. It was so painful I could not even think straight. 

The next day the surgeon came in and told me I had a choice to stay overnight or go home with the cath come back on Tuesday which was 3 days away and because I got no sleep I said I wanted to go home. It felt so good to be in my own bed the first night and by the time it got to Tuesday I honestly felt it wasn't going to happen. I was in so much pain vaginally and with urethral pain. I tried first and gave a urine sample, I could barely even get 1/3 of the cup but it had to do. So I drank more water. I was there for 3 hours and could only out put 100cc at a time 5 times with 900cc remaining in bladder. They said I had to go back home with cath in until the following Tuesday. I was so upset I was crying. I had a yeast infection so I was given a script to help that and I had already bought the Dufflican because I knew from the last cystocopy I had that I got one so I played it safe. So I took it already when the itching started. 

I got a call back about 3 days before I was due to have the cath out asking if I had gotten the antibiotic and I said no. Well it turns out I had to different bacterial infections and was given 7 days of Cipro a strong AB to kill both. I still have yet to take another Dufflican until I have finished this med. 

So I go back on the Tuesday and thank God I was there early as I got to go in at 7:30 am and try. I felt good I was so pumped up to "FREE THE PEE" and pictured all my supporters and friends saying it for me. My bladder did not seem like it was having as many spasms however I was also taking Flexeril a muscle relaxant I use for my jaw so maybe it helped. The first attempt I could only go 50cc and I was devastated I was not going home with this in no matter what.  So after 3 hours I went 200cc than 250cc and I told her I am good and going home. Thank God they let me.

Since the catheter was in for 11 days I think it helped calm my bladder along with the flexeril and Mybetriq (over active bladder med) however I am still in intense pain and I am losing bladder function so I hope it changes sometime soon. I see my urologist on the 30th of May so I can update him on what has happened and maybe get some antispasm meds or see a therapist who deals with Pelvic Floor Dysfunction because now I am positive that is what I have and not IC. I will make sure to update after that appointment. 

Thank you for all of you who were with me during this time to support me when I was in the hospital and at home. It was a horrid experience but I know that other Endosisters were going through even harder times so I have to be thankful it wasn't any worse. 

Have any of you had bladder issues after Anaesthetic or surgery?

#WonderWoman #Chronicpain #spoonie #female

I consider myself a very powerful female in a society that still sees women as the weaker sex,  housewives, baby makers and also very submissive. It is hard to voice your opinion being a female in a man's world. Women have had to overcome many obstacles for the generations next to come and I thank all the women before me that have helped push equal rights for women. Yes we have come a long way but after watching "THE UNTOLD STORY OF AMERICAN SUPER HEROINES" as well as " MISS REPRESENTATION" I realize that women may always be seen as sex figures with no power. 

I am saddened to see this as I am a type of person who questions everything and I believe in justice. I wouldn't say I am too opinionated about much however growing up in a home where women were view less equal only made me stronger and gave me the power within to make change. I am one person however though social media I have been lucky enough to find so many powerful women out there that I am proud to call friends. The reality is that women are the stronger sex and it scares men. I think sometimes Women's lib started to build a generation of lazy men who sit at home and expect the women to be the parent, the wife, the friend, the bread winner etc. It isn't like we are making more money but more jobs are opened to females now than before so I feel that men have taken a back seat and to me this is scary. I believe in equality and I believe the best person gets the job not the colour of your skin, religion, sex etc. The best gets the job but that isn't happening anymore and I truly believe women are so worn down by having to work so hard when the generations before women stayed home. 

Me being a chronic pain sufferer as much as I hate the notion of being the woman who stays home I would gladly take that option right now as I know even doing this I can still be empowered as I have a husband who knows the power of my soul and he knows I can't be stopped. I think who you are married to and who you are friends with definitely play a key role on how to live the life of a true life "super-heroine" 

I can see my traits in my daughter and I know it will help her but also hinder her in her future. My daughter is a lot like me which in turn could be a good thing but it also can be a bad thing. I let her dream big and I don't shatter her dreams like mine were as a child. She tells me she wants to be a designer of gymnastics apparel and you know what, I can see it happening and even if I didn't why destroy a dream that seems so real to her? She has the power to be anyone she wants to and I know that she will do it well. 

Sometimes having this power brings on depression, which it has for me but I suppose a lot of that has to do with medical issues my entire life as well as rejection. I have had to fight for everything I have in my life including my health and I am tired as I have done 80% of it alone. Sometimes being a Super-heroine is so tiring and at times you feel like you should dumb yourself down to please others.. But I will never do that. 

I don't see the strong person in me that other people see but I must be if a lot of people say that. I have been through hell and back and I am here ready for the next door to open. 

To all my Super-Heroine women I have had the pleasure to know in my life I thank you for showing me how strong you are as it helps me to continue this fight. You are all amazing and I am in awe of how amazing and strong you are. :) 

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.