Hematuria caused by Telangiectasia of the bladder

Skellyboy

A combination of surgery , self dilations, numerous excursions into the bladder and RT has just about destroyed my bladder. A few months post salvage RT I started passing blood , clots and some strange tissue structures. 

Oncology blamed urology and vice versa. An out of area to prof in Manchester confirmed RT damage and said unfortunately no miracle cure.

As time progressed the bleeding etc reduced and so did the bladder capacity, I can't even fill a sample bottle. I now have a SPC for life.

No one has ever mentioned Telangiectasia. 

Last week I was in a Zoom meeting and based on the above info the opinion was there is no hope of any treatment being successful.

Thanks Chris

Edited by member 13 Sep 2020 at 20:36  | Reason: Spelling

Trevor 

I tried the hyperbaric oxygen treatment, it didn't save my bladder but I think I was too far gone by the time I started in the chamber. I think I paid £12 a session and had two or three a week for a few weeks. I got a discount because of the cancer diagnosis. Very few medics understand pelvic radiation damage. Who has advised on the frequency of your treatment ( you can't name professionals on here) just indicate type of person.

Happy to answer any questions you may have on the treatment.

Thanks Chris

Edited by member 11 Dec 2020 at 14:29  | Reason: Not specified

Trevor , there seems to have been some research and trials since I had treatment. One trial suggested 5 days a week, post treatment I did think my 2/3 days was not enough, but the centre was only open 3 days a week.

There does seem to be some good success stories with the treatment.

Thanks Chris

Trevor hasn't logged in since posting that reply, getting on for 5 years ago.
Chris is still active on here.

Hi folks, it’s the old Trevor - I’m still here, but had to create a new account.

I have had a very positive experience with HBO Therapy over the last five years, treated at 3 atmospheres.

I started with three sessions a week for a month, then down to two a week for another month, followed by once a week. After a couple of years I settled at a “maintenance” level of once a fortnight.

In that time I took a break to see what would happen, and after about six weeks the nagging pain in the groin returned, so before any bleeds occurred I went back to my weekly routine.

So far, after five years, I have only had one small bleed, and in my case I am certain the success in keeping it at bay it is down to the HBO Therapy.

11 years on from my original treatment I am just now having radiotherapy for a recurrence in lymph nodes, so have gone back to twice a week.

As with all medics my current oncologist has no medical opinion to give on its efficacy, so he expressed his tacit support by saying “I’ve heard anecdotally that it can help, and improve the success of the radiotherapy”.

I’m fortunate to be able to go to a local MS Centre in Kent who provide it at cost (£20 a session) so it is affordable.

I hope this reassures you that it is worth a try to see if it works for you.

Thanks Chris.
My treatment took the form of Hormone therapy & Radiotherapy ( 5 sessions over a 10 day period - the PACE trial ).
Completed my radiotherapy in March ‘24 but my pelvic radiation disease didn’t kick in until a couple of months ago.
I suspect - given your ‘name’ - that you used the same oxygen chambers as me. I.e. the Multiple Sclerosis facility near Colwick.

Cheers
Noah

Edited by member 21 Jul 2025 at 21:18  | Reason: Not specified

I have been prescribed medication ( Solifenacin ) for the constant bladder urgency & occasional incontinence & hence I would struggle to gauge any reduction in urgency as a result of the medication or oxygen therapy.

I guess therefore the only marker would be whether I’m passing blood.

I’ve had just 6 sessions thus far but plan - after a few days away in a couple of weeks time - regularly booking 3 sessions per week ( the local facility is only open 3 days per week ).

Noah, I was being a bit cagey, people who answer five year old posts often turn out not to be genuine. I did also try some acupuncture in the lady bay area for urgency, a bit more expensive than the HBO. Going back to my previous answer my damage was very severe, I did stop bleeding but probably because there was nothing left to bleed. My bladder capacity is probably around 50mls, that is 50 not 500. I was prescribed trospium chloride for my bladder spasms, there is some evidence about it  not crossing the brain barrier. As Trevor suggested it is well worth trying the HBO.

Trevor interesting that you had the HBO with your lymph radiation treatment.

Thanks Chris