Hyperbarics oxygen

It was aimed at pelvis. 2 Tattoos on hips in line with my crouch & 1 in the lower part of pubic hair. I finished treatment mid June 2018. I had complete bladder retention after radical hysterectomy and had to self catheterize all the way through 26 treatment with 3 degree radiation burns at end of treatment. In December 2018 my bladder decided to start dumping on its own.  I have Had horrid bladder and abdominal pain Since the middle of radiation. I have been dx with radiation cystitis and pelvic fibrosis which I assume is Pelvic radiation disease. I now have total incontenience which causes constant painful rashs. My uro gynecologist will not do bladder bulking due to the bleeding cystitis. The uro dynamics show my bladder will not expand and urethra is too weak to hold urine in bladder. 

I know there are so many others who suffer greater side effects for which I feel awful and I don’t want to sound like a baby but,, my quality of life is severly compromised.

i‘ve beentold I have a very unusual and complex case (not always good to be special). My oncologist is saying I need to do the least invasive interventions because I’ve had changes she’s never seen. Sooooo, she is referring me to Hyperbaric oxygen treatment. My sorry if this TMI. I just had a ct scan which was sort of clear. I’m open to any and all suggestions. 

Thank for asking. 

NoTimeForCancer said:

Roses, I am sorry to hear all

Roses, I am sorry to hear all this.  I really hope you can find someone who can help you.  It's not TMI, you may be helping others who will come along.  

I’ve been reluctant to post this because I don’t want to discourage others from external radiation treatment but I sure wish someone would have warned me. I would not have had it!!

thank you for your kind words

zsazsa1 said:

It is good that you are

It is good that you are posting this.  I made the decision to go with external pelvic radiation, IMRT, and it was a very, very difficult decision.  I'm suffering through it, with pretty bad diarrhea (although the probiotics have helped), mild cystitis, and terror of what may be to come.  And it may not have been necessary, or it may have saved me, or it may have been for naught.  Such an awful decision.

Meanwhile, I hope that the hyperbaric oxygen therapy helps.  If you are in constant pain, would a cystectomy and urinary diversion be more appropriate at this point?  I mean, that sounds horrible, too, but if you're in constant pain, and terrible rashes from incontinence, it might be a better option.

thank you for the suggestions but those interventions are too invasive at this point. I may be forced to do something more drastic Later. 

I wish you an easy course with your radiation again odds are you won’t have any long term difficulties. Please keep me posted. Sending good vibes your way. 

ConnieSW said:

Roses

how did the consult go?

Thank you for asking. The consult was very interesting. It’s a huge tube like chamber that I’m in for 2 1/2 hours 5 days a week (that doesn’t include travel time) The doc did say he thought it would help with pain. He explained that the 100% oxygen creates new blood supplies all over the body but for me in my bladder & pelvis. The treatment is used for many ailments which insurance will pay for.  Again he’s never seen a woman with the level of damage I have but many men. It’s a huge commitment of time but it’s the least invasive treatment option at this time. I’m hopeful but not overly optimistic. My first treatment is this Friday. Thx again for asking.