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Radiation cystitis

Rosesforever's picture
Rosesforever
Posts: 36
Joined: Sep 2018

hi all,

just wondering if everyone has any treatment suggestions for radiation cystitits?

happy holidays and best wishes to everyone

zsazsa1
Posts: 356
Joined: Oct 2018

When did you have the radiation done?  Was it whole pelvic with four beams, or was it IMRT?

Rosesforever's picture
Rosesforever
Posts: 36
Joined: Sep 2018

treatment ended last June. I don’t know exactly when cystitis started but I’ve had many UTI’s and lots of pain. In December I started seeing lots of blood. 

lovemyhubby
Posts: 27
Joined: Jan 2018

I began having symptoms of radiation cystitis while still receiving IMRT. Formally diagnosed in  November. More conservative treatments have failed. I am now taking hyperbaric oxygen therapy treatments daily. Just finished 21 of 40. Not seeing much progress yet but doctor is hopeful I should see signs of improvement soon.  I hope so

Rosesforever's picture
Rosesforever
Posts: 36
Joined: Sep 2018

I have looked into all interventions But nothing sounds good. My cystitis was just dx with the help of a cystoscope. 

The more I read the more I understand this is very difficult to treat effectivel. 

What other interventions have you tried if you don’t mind me asking ? Did you try bulking ( Botox/collagen)?

Thank you for the reply. I hope you get relief soon. 

BluebirdOne's picture
BluebirdOne
Posts: 205
Joined: Jul 2018

Hopefully you will get relief, soon. We are thinking of you. 

xxoo

Denise 

MoeKay
Posts: 220
Joined: Feb 2004

I found out about 15 years after finishing radiation that I had radiation cystitis.  I've had several episodes of bleeding and was evaluated for hyperbaric oxygen treatment (HBOT) during the most recent episode.  However, I was eventually advised by the treatment facility that Medicare would likely not approve the treatments, because I had not previously undergone at least one course of another type of therapy that had failed.  Coincidentally, around the same time, the bleeding, which had lasted for a period of several months, completely stopped!  So I was actually happy for the delay in approval of the HBOT treatments.  Otherwise, I, and my treatment team, might have incorrectly concluded that it was the HBOT that resolved the problem, when the bleeding and other symptoms ultimately resolved on their own with the passage of time. 

When the radiation cystitis decides to rear its ugly head, I experience problems that mimic a UTI, although when tested, I have not been found to have UTIs in the past.  One thing my urologist initially recommended, before he got the results showing that I did not have a UTI, was TheraCran One, a high-potency cranberry supplement.  If you've had UTIs, you might ask your urologist whether he/she thinks this product might offer some benefit to you. 

In addition, here is a link to a 2016 study entitled, "Challenges and Opportunities in Radiation-Induced Hemorrhagic Cystitis," which discusses current treatment options, including Botox:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5010626/

Also, the above study mentions that the Radiation Cystitis Foundation (http://www.radiationcystitis.org/) is a nonprofit patient advocacy group working to help improve the lives of all those affected by radiation and to advance treatment of radiation cystitis.

Finally, since radiation cystitis involves inflammation of the lining of the bladder, I try to follow an anti-inflammatory diet to the extent possible to reduce overall inflammation in my body.  I figure it can't hurt!

Wishing you the best,

Maureen

Rosesforever's picture
Rosesforever
Posts: 36
Joined: Sep 2018

thanks for the valuable information. And,, yes a tincture of times sometimes allows healing or resolution. 

I will research the websites you included. My radiation cystitis is painful and was bleeding but that has stopped. I’m not sure what my urologist will recommend but I will proceed with caution. The Botox/collagen I’m interested in is more for incontenience but hopefully will help with cystitis. 

I’m so sorry after 15 years you had to endure this. I hope all else is good. 

Thank you again. All the best to you, DeeAnna

JimJ
Posts: 2
Joined: Sep 2019

Treated for PC in March in 2018 with HDR Brachytherapy on 3/8/18 and 3/15/18 ........begain pain on urination 5/19 showed a drop of blood 6/19 screented for bacterira and cacner cells in urine in 6/19 and CT Pet Scan showed nothing 7/19 and cystoscopy showed nothiing 7/19......still showing minor bllod and red blood cells in urine......Have read radiation cystitis can be progressive and very serious if progresses may turn into bladder cancer. Thus doctors want to screen for BladderCancer evey 6 months. I have been in communication with the Radiation Cystitis foundations . Read the article Challenges and Opportunities in Radiation Cystitis...and many more Medical Studies on line .it appears once someone is seeing blood in urine it is no longer microscopic and macroscopiic and one is in stage 3........It is my understanding that Botox only treats bladder control of urgency and does not stop the blood in urine..Am I wrong?...Only treatment I can find that has any success for some is Hyperbaric Baric Oxygen Therapy......Medicare will pay for treatments ......Has anyone had success in HBOT stopping blood in urine or relieveing pain on urination?

I am now striving to get urine analysis tests every 30 days to see if quantity of blood and red blood cells and protien is increasing

Rosesforever's picture
Rosesforever
Posts: 36
Joined: Sep 2018

Hi JimJ,

I developed radiation cystitis several months after external & internal Radiation. I was referred to Hyperbaric Oxygen treatment for 30 2 hour treatments. My last treatment was second week in July. The cystitis was completely gone by the end of July. It’s time intensive but painless. I was able to watch a TV monitor while in the tube. You are correct, botox doesn’t help with the bleeding but I needed it along with collagen for incontinence. Unfortunately the bulking I had in August was unsuccessful but I will have another bulking scheduled for November.  I Have no pain because all the nerves in my bladder & urethrea are gone which may sound good but I can’t feel if & when my bladder is full which means I have 24/7 leaking (I should have stock in Depends).  My hysterectomy was in 2/18 and since then I’ve had 15 UTIs. My uro-gynecologist now has me on prophylactic antibiotics which seems to be working because I haven’t had a UTI in almost 2 months. I might add I had a cystoscope (one of 5) that was biopsied for bladder cancer. It was negative.

Please let me know if you have any questions.  Good luck with your treatments. I know how painful and frustrated you must be & I’m sorry. Best wishes to all of you in this group. 

Armywife's picture
Armywife
Posts: 325
Joined: Feb 2018

Just reading what you are describing is heartbreaking.  I'm so sorry you've been through all of this.

Rosesforever's picture
Rosesforever
Posts: 36
Joined: Sep 2018

thanks for your kind words. Like all of you on this forum it seems like I’m just waiting for the other shoe to drop. I’m waiting for a call from my urologist (different than my uro- gynecologist) today to tell me what’s wrong with my right Urter something was seen on my recent ultrasound. I’m concerned there’s kidney damage or potential for damage. I’ve read so many horrible posts on this site about stent nightmares I think I’ll pass. I so appreciate all the knowledge I’ve gained from all you wonderful ladies. Thank you. 

JimJ
Posts: 2
Joined: Sep 2019

Thank you for your response......have appointment on Oct 8th with my docotor would like the docotr[s support with HBOT

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