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Loss of bladder function after radical hysterectomy.

Hiker25
Posts: 3
Joined: Dec 2017

Hi all. I had a radical hysterectomy done 2 week's ago for cervical cancer at the Huntsman Cancer Institute in Utah. I had a catheter for my stay in the hospital. The surgery went as expected. They removed the catheter before I left and I barely peed enough but they let me leave. Since I didn't live in SLC I stayed in a hotel before travelling home. The next night I was in agony. Not only from the pain of the surgery but because I could barely pee. Long story short I ended up in the ER. My bladder almost exploded. I was not aware that could happen and I was very heavily medicated. CT scan showed no damage. But I ended up with another catheter. Then a void trial again a few days later. Could pee but not enough. Catheter again. This time with a plug so I could do it. A few days later another void trial and I could not pee at all. They tried to show me how to self catheterize but it was only 12 day's after surgery and I couldn't do it. It felt like putting an ice pick up my euretha. Excruciating. I now have another catheter. They think my bladder is traumatized and we're waiting. Has anyone else here gone through this???? I'm at my wit's end. I think something is terribly wrong and waiting is making it worse. Thanks for reading this!!! I'd really appreciate your thoughts if you've gone through this.

 

 

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2446
Joined: Mar 2013

Hiker, I did not have as much of a problem, but I remember not being able to urinate at first either.  I think that you said since you were able to go 'some' there is hope.  I hope you can get it back.

Northwoodsgirl
Posts: 509
Joined: Oct 2009

I am very sorry to hear of your bladder problems! That sounds awfully painful! Have you had a urologist consult? If not get one. What are they telling you may be the cause of your bladder issue? I think my catheter was removed within the first 24 hours just as soon as I could walk to the bathroom. Your nerves control your bladder fullness sensation. Did the surgeon damage a nerve that affects your bladder?  I think the term is a “neurogenic bladder”. Anasthesia affects the bowels and bladder but you are too far out from your surgery to be dealing with bladder affected by anasthesia. Also a pelvic floor disorder clinic may be able to help you. More questions than answers....keep us posted. 

Hiker25
Posts: 3
Joined: Dec 2017

Thank you both for writing to me. I have no idea why they waited until the last day I was in the hospital to remove it. My Dr is not answering any questions as to why my bladder won't work other than self catheter and give it time. The more I'm reading about the side effects of this surgery the more I realize something is wrong. But again. My surgeon wants me to wait. Well I'm done with that!!!!!! I am scared to death I have permanent damage. It sucks to have a surgery around the holidays. I have to wait until Tuesday to reach a urologist and you know how that goes. It might take me a bit to get an appointment. I'm trying to stay positive but it's hard.

Tourmaline's picture
Tourmaline
Posts: 1
Joined: Jun 2018

Hello Hiker, My heart goes out to you. I don't think there is enough understanding and attention paid to bladder problems after hysterectomy, and how devastating it is to the patient to lose such a basic function.  I live in Sweden, but my story is not so different from yours. I was diagnosed with vaginal cancer in August 2015 and underwent radical hysterectomy, radiation and chemotherapy. Like you, I was unable to void my bladder after the catheter was removed one week post-op. I was told to give it time, and a new catheter was put in. After another week, I went through the same process: catheter removed, failed attempts to void. At that point, I was shown how to self-catheterise and sent home with disposable catheters and the message that voiding difficulties "usually resolve within a few weeks of surgery". They didn't. Every time I went for a check-up with the surgeon who did the hysterectomy, I brought up the problem of not being able to empty my bladder. She was vague, even sometimes evasive, about the chances of regaining the ability to pee. I had to fight hard to get an appointment with a urologist, who carried out tests on my bladder function and also performed a cystoscopy (where they look inside the bladder with a tiny camera). Conclusion? I had iatrogenic damage to the nerves that control the detrusor muscle. In other words, the surgery to remove my tumour had severed the nerves that allow the bladder to contract and squeeze out urine. This is why my brain could send the signal to my bladder to empty, and a little urine would be produced, but then nothing more would happen. When I put in the catheter, there could be up to half a litre of urine in there that obviously needed to get out. The urologist said there was nothing they could do to repair the damage, and that I would have to self-catheterise for the rest of my life. I was devastated, and did not get any kind of psychological support to help me process this loss of basic function. The situation now, almost three years since my diagnosis, is almost unchanged. Sometimes I can produce a little more urine spontaneously, but I always need to self-catheterise anyway, to empty the bladder completely. I have disposable catheters delivered to my home every few months, and wherever I go I must take a sufficient supply of these with me. There is also a greater risk of UTIs so I have a standing prescription for antibiotics which I can bring with me when I travel, for example, in case I get a UTI while away from home. I want to give you a realistic picture of my situation because I suspect you are not being given full and helpful information about your condition, as indeed I was not. I think it is unusual for this damage to be permanent, which may partially explain why the surgeon was so dismissive of my questions and concerns, but does not excuse her lack of empathy. I sincerely hope that you will be luckier and that you will regain your full bladder function, which you may find out once you have managed to see a urologist. But just in case you don't, I am sharing what it is like for me in the hope that you will feel less alone and better understood, regardless of what you are facing. I know I would have liked to feel less abandoned in my distress. I have since got very skilled at self-catheterising, which initially required a mirror and full concentration... Now it is quick and completely painless, and I can do it almost without thinking about it...although it is not something to attempt after a few glasses of wine. ;-) If you are having difficulty with self-catheterising, do ask for help and make sure you are being supplied with catheters that are self-lubricating and not too thick (there are many different sizes available and the urology people need to take the time to get you equipped with the right kind. In fact they need to give you and your predicament their full attention). I am determined to live my post-cancer life as best I can, and I try not to let catheters get in the way of it. I travel, I do sports, I stay active and have kept on working. But I do admit that I still find it hard to accept this disability and I don't feel anyone fully understands the loss it represents. It has affected my self-image and my relationship with my body as a whole. It is really hard... along with all the other fall-out from the cancer itself, the treatment and the operation. I hope I am not depressing you (if I am, ignore me!!!) but I know I would have wanted to talk to someone when this happened to me. So if you feel like talking/writing, I'm listening. <3

  

Red Dahlia
Posts: 17
Joined: Apr 2016

Hello Tourmaline,

I also had this happen to me post hysterectomy.  I self cathed  for  two years.  I chose to find an accupuncturist to work on the nerve damage  during this time frame.  I also went to a physical therapist who specialized in pelvic floor disorders.  I don't know if it was a combination of the two, or just the accupuncture, but I am now able to go on my own with no difficulty.  I still use the bathroom on the schedule that was recommended of no more than three hours perferably closer to two hours apart. It was stressed to me that it was important not to let the bladder stretch and become too full.  This could possibly cause me to go backwards.  I never regained the full feeling of the urgency telling me I need to go, but I m ok with the schedule rather than having to self cath my whole life.  I do understand your feelings of loss...I thought I was going to have this as a permanent disability.  I feel very fortunate that it finally resolved itself.  I had one bad UTI during the time I was self cathing.  I did some research and started taking a daily dose of D-Mannose.  I did not have anymore infections.  I continue to take the D-Mannose on a daily basis.  Hopfully some of my experiences can be helpful to you.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2446
Joined: Mar 2013

Red Dahlia, thank you for sharing your story.  It is good to know there is something to try and that it works.  

Rosesforever
Posts: 9
Joined: Sep 2018

thank you all for sharing. It’s hard to find someone else who has the same probleM. 

i had a radical hysterectomy 2/2/18 for stage 3 b endometrial cancer. I was told I would have a foley for a week, then two weeks ten three weeks.   9 weeks later I needed to start radiation so I was told I needed to self cath. The 25 external radiation sessions was a night mare. 

I amnow seeing a urogynocoligist who has recommended PTNS which is the gold standard for OAB. He also rx Fosomax used off lable. It’s working. I’m causiouly optimistic. I may have to cath one time a day or night but it’s better than all the time. 

Id love to hear other stories. I feel so alone. Good luck to all you warriors. 

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