Alicia's Cancer Blog

Bladder Irritation

Today was day 13 of radiation.  I am doing great aside from low plateletes and some bladder issues.  The pain is like a UTI.  Burning, need to pee. hurts to pee.  Nothing helps and I forgot not to take Advil.  Drinking lots of water, cranberry juice, taking AVO.  Urinalysis is showing no signs of bacteria or blood so far.  They took another today, but he wants to swab my urethra to see if we can determine the cause or at least rule out infection.  Is this not just another common side effect of the radiation and chemo?  

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This is a very common side effect of the treatment. It was described to me as peeing razor blades, and as I remember it that’s an accurate description. What helped me the most was using a peri bottle full of water and squirting water down there while urinating. And keeping up on pain meds. I know, no fun. Hang in there!
Kim likes this comment
I did the same as Terri...squirted water bottle while urinating, major life saver. Sorry Alicia!
Yep that was really a problem. I loved just soaking in a warm bath.
Kim likes this comment
I hadit too, it was so bad I was crying in the bathroom. Had to get a catheter for a spell.
I'd recommend skipping the cranberry juice, it makes the urine more acid. So does citric acid, which is in lots of drink powders, Gatorade, etc. Swabbing urethra? Um no. That will add to your misery. If clean catch urine is negative, it's from radiation. More water dilutes the urine and it burns less. Get a Rx for Xylocaine jelly 2%, and apply a little externally. Lots of tub baths help. Pee in the tub if you have to, or use a squirt bottle, like an old dish soap bottle, while you go. So sorry! This sucks, really!
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Sorry about the peeing pain.. i had a towel to chew on when i was going through this.. and pain meds. hugs and all the best during this difficult journey.
Radiation gave me urinary issues too. I got to the point I couldn't urinate at all due to things swelling shut. Felt like my bladder was going to pop. Had to go to the ER. They shoved the largest catheter they could find in there and left it a couple weeks. Such a horrible experience.

The doctors like to downplay everything so they don't scare patients away but the know the radiation screws up everything anywhere near your butt. I almost feel like they should have to go through treatment themselves before being able to administer it to others.
Kim, Alicia like this comment
So true!!!!
Radiation definitely creates bladder pain. I don't think any of us did not experience something like your pain! Post treatment UTIs can be an issue (Urinary Tract Infections) as the damage to the bladder area can make it easier for bacterial infections to take hold, and there may be problems with "keeping clean" around the neighboring anal area. If you develop a UTI (cystitis) you will know it! Cipro is one effective antibiotic for that.
Absolutley, this is so common. Just imagine the radiation effects on the inside will be like the stuff you can see outside. So, this is normal in my opinion. I used a bottle of waterpoured over my front bits to dilute the pee during this time. Later on I peed into water with a plastic bidet in the toilet seat. It stopped the stinging sensation. And use a local pain med like lidocaïne/xylcaine 2%.
I also experienced that too--it was miserable. I'm sorry you are having this side effect. I found no relief, but you have gotten a good suggestion above--try the peri bottle suggestion. Drink lots of water and avoid anything that will make more urine more acidic. At the very least, I hope it gives you some relief to know that this is a common side effect among a lot of us. Hang in there!
Update - After a physical exam which is not showing much irritation, I insisted they test urine again and it is positive for infection this time. Thank you for all the helpful advice! I have my squirt bottle of water and 2% lidocaine which helps. Results of culture today will determine antibiotic.
Tyndall likes this comment
Glad you insisted! Advocate on!
So sorry Alicia, I was spared this side effect but seems like others have really good ideas on how to relieve this problem to give u some comfort.
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Okay, can we talk vaginal stenosis?  I have not been on this site long enough to see a lot on this side effect, but I have talked to enough people who consider it a major long term problem that I am wondering if there is something I can be doing now during treatment.

My doctor's response when I asked him about it was "I have to give you a dilator after treatment..."  Like given a choice, he would not.  And the only reason I know this is a side effect is from this site and others.  My doctors have not mentioned it at all.  Does that mean I just have to live with it and shouldn't be worried about it right now?

I would like to hear your views on this.  Thanks!

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Hi Alicia! Your experience is not uncommon unfortunately. I had to ask my radiation oncologist for the dialator...kind of crazy...and he is a great doc,but definitely fell short on this one.
Yes.. vaginal stenosis is a real issue for most. Plan on using the dialator once you are healed sufficient enough to do so. It will be a new normal for sure...I'm still not great almost 5 years out. Many here have had great results with pelviv therapy. Definitely keep it on your list of things to do once you are up to it but for now just get through treatment and healing.
Sara
Donna likes this comment
*pelvic
Vaginal stenosis is definitely a side effect of the horrible radiation and vaginal dilation is an intervention that has been found to help. I received proton radiation and was told that the beams avoided my vaginal quite a bit. Even then, I do have some stenosis. I have only had intercourse once since completing treatment October 8th and it was very painful. Our vagina is made of elastic tissue and supported by muscle so stretching gradually is a good idea to prevent stenosis. Please do insist on vaginal dilator even if your doctor doesn't seem too keen on it. This problem is very real and no one would understand unless going through it.
Cheryl likes this comment
My doctor introduced this dilator to me after four months I finished my radiation. It was a way too late. I've heard that people who started to use them earlier have less issues with stenosis. So I guess the sooner the better.
My radiation oncologist told me about it upfront, and provided me with dilators. I am 3 1/2 years post to treatment, and still have trouble with that-the sooner you use the dilators and the more frequently, the better. I understand some people on this site use them while they are receiving the radiation, but I’m not sure how that works-maybe they can chime in and tell you.
Kim, Cheryl like this comment
It is real. It is definitely in addition. I am not in a relationship, so I did not use the dilator very much. As a result, I may never be
Able to have sex again. I have heard pelvic floor physical therapy can help. I have also heard of people being put under anesthesia it have the scar tissue broken up.
I had to press this issue too. I have to say, the brachytherapy for the final 6 treatments did a lot towards alleviating the stenosis, just as my radiation oncologist told me. I no longer need to use the dilator. But it was the estrogen cream applied externally, that made a huge difference. I was also told by my NP to continue intercourse during treatment if I felt like it, and use the dilator as soon as possible.
Easterly likes this comment
Thank you, that brings up another question. If I felt like it I would think it necessary to use some type of lubrication. Since some things intensify radiation, I am guessing nothing oily? Or does the body absorb everything like that within a few hours?
Water based lube only
'continue intercourse during treatments if felt like it.'
Can't even imagine having anyone approach this body for sex right now. Sex? No way! And certainly my 75 years of age have something to account for that, but can't imagine even at 50 I'd feel differently. One 'treatment' at a time please lol.
However, should I be looking into that estriol cream for when have PAP snear?
So glad you asked this Alicia,I've been wondering also as my dr. hasn't said anything about it either.
WOW...get another doctor! I have a link on my website to University of Wisconsin medical center site that actually recommends you begin use of a dilator DURING treatment if possible. My radiation oncologist never mentioned the issue during treatment and I discovered it when undergoing a pap smear...thought I was going to pass out. It is a serious problem. Get a GOOD dialator - the one I was provided was about like a plastic candle! and use it as soon as you are able to.
Kim likes this comment
I agree with Helen, try to use it during treatment and ask your doctor to do some additional research. As I mentioned yesterday, my doctor (whom I truly liked and had faith in) kept dismissing my concerns about the stenosis and said the dilators weren’t even allowed until 6 plus weeks after treatment. I could tell my stenosis was going to be a problem very early on. I had a menstrual cycle the first week of treatment....picc line install, chemo, radiation and horrible menstrual cycle...I was a mess....oh and then my hair came out too 😭. I was humiliated on the table because they really didn’t know what to do about my menstrual blood and they felt I should remove my tampon. So they placed a small towel underneath me. My doctors agreed that the odds were slim that I would have another period as I would go into menopause due to the radiation and they were right. I had to ask more times than I can count about the stenosis and then finally was able to see the gynecology oncology team and they got me on estradiol (huge huge huge help) and helped me with the dilators (ordered much smaller ones that didn’t look like candles) and started on pelvic floor PT. I’m now going to have surgery this spring / summer to open up the final area that is scarred so we can get to my cervix and so sex is easier. I’m very glad you’re inquiring now., there is still time! I would have used dilators at home if I had known all of the troubles this would have caused me.
I have at times thought the same.. But he is just awkward and doesn't handle the conversation well.. The thing is that I live in a small town where he really is the only one and I love my medical oncologist. Next week I plan to speak to him about the situation and then just handle it all myself. Seriously, the dilator they gave me looked like a medieval torture device! I think he was embarrassed to give it to me! Really make me want to yell and scream at everyone to take this seriously!
Kim, Cheryl like this comment
At times like these I want to say - what would you do if your wife's vagina was shut down for business? LOL
Kim, Cheryl like this comment
Oh gosh, Helen, I've been concerned about PAP and dilator, guess I better bring subject up tomorrow. Have 7 Rads left
Helen Marshall likes this comment
Yikes, Kim, don't think I could've handled that being on the table saga, bravo to you!
Kim likes this comment
My radiation oncologist never mentioned it until my last day of treatment when he handed me one and told me to start using it as soon as I could and why. Prior to that I had no clue that vaginal stenosis was a common side effect of this treatment. I do have to say that despite this lack of information earlier in my treatment, I loved and still love this doctor and am not criticizing him. For whatever reason, this seems to be an uncomfortable topic for some doctors to discuss. I have to be honest with you about my dilator usage. I did it regularly for quite a few years without successful results. Don't let that keep you from doing it though, as it works for some women!
You might ask some of the nurses in the Radiation Oncology Department...I found that it is nurses who are most knowledgeable about self-care. After the end of treatment a few sessions with a pelvic floor physical therapist will help train you to use the dilators correctly and carefully.
Cheryl likes this comment
Yes it has been my experience that the nurses are much easier to talk to about it than he is. They know at least how painful a PAP smear would be!
Cheryl likes this comment
Hi Alicia,
You've come to the right place and there is so much information from all of us here! This is a very personal issue for me and I became an advocate for Pelvic PT for anyone who has to undergo pelvic radiation. It seems hit or miss on whether women are told about vaginal stenosis up front or post treatment. I was forewarned about it so I asked my doctor at my first appointment! His advice was to continue with intercourse through treatment until it became uncomfortable. I think I made it to week 4 (barely). The dilators they give you are awful and there are much better ones available. I believe that Tyndall has recommended a nice set on her "advice from a nurse" on the analcancerhelp.info site created by Helen Marshall. Another resource is www.sexualityresources.com which has tons of great educational material as well as products for sale. I bought a set of graduated vibrators here and used them like dilators with the added benefit of the vibration for massaging/stimulating the healing tissues. Once you get to a point where it's uncomfortable, then I suggest you stop and wait till the 6-8 weeks post-treatment. And then start using the dilators. I have some excellent instructional material if you want to private message me your email. Focus on the treatment and then the healing. We are all here to help with the side effects. Vaginal stenosis does not have to be a long-term issue and there are some factors that will determine where you might be with side-effects. I HIGHLY recommend you speak with your gynecologist about this and make an appointment with them now and then 6-8 weeks post-treatment too. And as soon as possible, get a referral for a pelvic PT and make your appointments now. They book way out in advance. Also, you might want to visit the HPV and Anal Cancer Foundations website as they put together a video about post treatment side effects and there is a large amount of time devoted to vaginal stenosis. With their help, this issue is being discussed more openly and I am hoping that this will make docs more aware of the concern and make pelvic PT a standard of post-treatment care.

Here are the links to the videos/ blogs from their site (you'll have to copy and paste)

https://www.youtube.com/watch?v=nWvHxVc0Gf0
https://www.analcancerfoundation.org/2014/09/24/can-pt-help-anal-cancer-recovery/
https://www.analcancerfoundation.org/wp-content/uploads/2016/02/Anal-Cancer-Forum-_-Carter-Slides.pdf

Let us know what other questions/concerns you have!
D
Cheryl, Kim like this comment
Thank you! Yes I have Tyndalls recommendations and will be buying the set on the website she suggested.
Hmm over here, I think it was about a month after I finished chemo & Radiotherapy that my oncologist handed me a box and told me I should use them ...
he never mentioned what or why, and I was quite surprise to find a “ Russian doll” set of pink plastic? I had to read instructions to find out where they where for!
To be honest, I gave up, finding them very uncomfortable , and when he asked me the quest “ did you use those dilators “ on my next visit, you should have seen his fave when I said “ erm no, they where hard and uncomfortable... so I went and bought some from Ann summers instead!!”
( it’s an Adult erm high street shop)
But it is something that I sometimes still have problems with, take care & good look x
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Vital Info

Posts

November 29, 2018

Hot Springs National Park, Arkansas 71913

April 18, 1963

Cancer Info

Anal Cancer

Skin Cancer

Squamous Anal

November 17

Mitomycin

None for the anal (I have always had irritable bowel) except 2 squamous skin on calf and shoulder and my dermatologist told me to get a colonoscopy because the outside can signal what going on in the inside,

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