Wednesday, May 21, 2014

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?

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