Bladder issues

[Bluebell86]

I just wondered if anyone would mind sharing what treatment they have received if any for gross haematuria. I’ve had a cystoscopy and seen the damaged blood vessels and was told by the urologist they was no effective treatment available but that I am at an increased risk of a secondary cancer from the radiation so perhaps should have a cystoscopy every 2 years. I experience visible blood and clots at random intervals and get the pain alongside it. Just thought someone out there might have been told something different by their urologist. I had cervical cancer so internal and external radiotherapy by the way.

[Jimbo65]

What a shock for you Bluebell86. I have had bladder and bowel issues getting progressively worse for some years. All down to the treatment for cervical cancer in 2005. It was discovered that my bladder wasn’t emptying properly, just before I went away, and I got a severe water infection in July while I was abroad. I didn’t realise it was a water infection as the lower abdo pain was usual for me. Turns out the water retention along with the infection has caused further damage to the bladder. After being fitted with a catheter things started to get better. Then I had a huge bleed and was admitted to hospital. Anyway, I finally got a cystoscopy which looked a right mess when I saw the screen. I was really worried it was bladder cancer. I was again fitted with a catheter and self catheterisation was talked about. Having now had a hard cystoscopy, which has ruled out cancer. And at no time has any of my medical team has suggested that I’m at risk of getting bladder cancer in the future. I now self catheterise 4+ times a day. It has totally improved my situation re bladder issues. Although I’ve been suffering for several years with bladder issues, and no one thought to see if the bladder was emptying properly. Not something that would have occurred to me but surely should have occurred to the medical team. I now tell everyone to never put up with incontinence, pain or discomfort if it’s effecting your everyday life. I still have bowel issues and am currently undergoing further tests to see if anything can be done to alleviate those issues. In the meantime, if you haven’t already had one, I suggest you push for a hard cystoscopy so they can rule out bladder cancer. Of course, no one can say for certain we’ll never get cancer again and its always going to be in the back of our minds having had cervical cancer but you need to make life right now your priority. Wishing you all the best. xx

[Bluebell86 in reply to Jimbo65]

Thanks for your reply Jimbo65. Sorry to hear of your difficulties, thankfully I’ve not experienced any infections yet or retention issues it is purely the bleeding so fortunate in comparison. The urology apt only came about because I asked if I should be concerned about the blood and so it was arranged via gynea urology under the 2 week wait. I will phone the gp and check that I can be referred for the “hard cystoscopy”. Might need it done under general as urologist had great difficulty getting the scope in due to narrowing of the urethra from the radiation. I wish you well in exploring treatment for your bowels.

[Jimbo65 in reply to Bluebell86]

Thank you. Yes I had a spinal anaesthetic for my hard cystoscopy which was very good and meant I could go home same day. Good luck on your journey to better health too. X

[Housebound]

Bluebell86. I do not have the bladder issues but I certainly have plenty of bowel issues that have been getting worse and worse since my radiotherapy treatment 3 years ago.

I had the latest sigmoidoscopy treatment just over a week ago and the surgeon has recommended me for hyperbaric oxygen treatment. It hasn't started yet but I am keen to explore anything that will allow me to live a life where I have to be within a few steps of a toilet.

Hopefully there will be an improvement in my condition and if so I shall be delighted to pass on the good news to all.

Kind regards

Housebound

[Bluebell86 in reply to Housebound]

Hello Housebound. I’m so pleased to hear you have been given the option of a treatment to try. I’d be really keen to hear if this improves your side effects & crossing my fingers that it will. I did read up about hyperbaric oxygen treatment about 4 years ago & enquired with my oncologist at the time but was told the service is no longer commissioned for pelvic radiation side effects. Perhaps it depends on the care trust your under or a case of meeting certain clinical need. Admittedly my side effects both bladder & bowel weren’t as bad then as they are now, almost 10 years post treatment (I’m 37 now). I will certainly put the suggestion forward. Wishing you the best for your onward journey with healing.

[Housebound in reply to Bluebell86]

Today I went to an interview at the Hyperbaric centre (the only one in New South Wales) and was told that they have about 75% success rate with radiation sufferers but it is still regarded as being in the experimental stage.

I was told that there is quite a waiting time before being accepted onto the treatment particularly as they can only facilitate about 12 people at a time. Priority of course will be given to in-patients. Also when someone is accepted it is on the basis that they will attend for 2 hour sessions on each weekday for the next 6 weeks.

I am very keen to try it out (or anything else that provides some prospect of improving my situation).

Will keep you posted.

Regards

Housebound

[Bluebell86 in reply to Housebound]

Can I ask how you arranged that referral, was it through your gastroenterologist? 75% is a great percentage and like you say definitely worth a shot even if it does mean you have to wait. Fingers crossed you get your opportunity soon and it is of a benefit. It must be a relief knowing there’s something to try. Keep us updated.

[Housebound in reply to Bluebell86]

I had yet another sigmoidoscopy a week ago and the gastroenterologist suggested that hyperbaric oxygen could be the way to go and made the referral. Now it's a question of waiting for an opportunity to get onto the treatment

[SGH-Aspro in reply to Housebound]

Hi Housebound,

I am new to this group and only just read your post. I was very excited when an oncologist consultant from a local hospice gave my GP the recommendation for me to try hypobaric oxygen therapy (private funding only). I thought to give it a go for £650 including discount. I had 10 sessions of 2/week. Actually, you feel good and energised for a limited time only but honestly, I needn't have bothered as a few months later it has had no effect at all! It may be beneficial for you.......I hope so. xx

[Housebound in reply to SGH-Aspro]

SGH- Aspro

Many thanks for your info.

Out of the blue I was able to start on the hyperbaric treatment. I go for 2 hours sessions on every weekday. I have been 15 times so far and that means that I am halfway through my treatment. So far I have noticed no change but I am still hoping that by the end of my sessions that things will improve.

One good thing is that the Hyperbaric nurses have now put me in touch with an incontinence service so I am hoping that that will also improve my condition.

Regards

Housebound

[AlfredSaxon]

Hello Bluebell86

[AlfredSaxon]

I suffer from radiation cystitis ( bleeding from the wall of the bladder) after having follow up radiotherapy after prostatectomy; on two occasions the flow was such that I suffered blockage and was admitted to A & E. ---radiotherapy can be a very crude treatment!! I am mostly clear of the problem now except for the occasional few drips in the urine. The Urology dept. at Southmead hospital Bristol prescribed HYACYST, this is Sodium Hyaluronate solution that has to be instilled into the bladder by catheter, using a 10 or 12 millimetre catheter. I get the product from Southmead and instil it myself, I do this every 6 weeks; the initial treatment is once per week at outpatients and then its DIY--you get used to it. This product is specifically designed for to treat our problem and your urology dept should be aware of it. I also have a weekly session of Hyperbaric Oxygen Treatment, its breathing pure oxygen through a mask within a pressure chamber--it takes about 75 minutes. I get this oxygen treatment through a centre in Bristol, the centre is associated with the MS (multiple Sclerosis society) and is not expensive. I am uncertain as to how much HBO treatment contributes to my current, satisfactory condition, however breathing pure oxygen helps to heal damaged tissue so I continue with it. HBO treatment centres are not common, so you will have to search around for one. The MS affiliated ones are charities, and some of the staff are volunteers so the cost is very reasonable--- given the greed around private health facilities that are "for profit" treatment in one of those facilities will probably be expensive.

Hope this helps: you have any questions please ask

Kind Regards

AlfredSaxon

[Bluebell86 in reply to AlfredSaxon]

Hello AlfredSaxon,

Thank you so much for taking the time to reply to my message, it means a lot. Like you I’ve been told it’s radiation cystitis, I have passed several clots but thankfully I have never needed to be admitted for this so more fortunate than yourself. Really intrigued to hear about the HYACYST treatment & great to hear it has made your symptoms more manageable. I was told they can’t cauterise the damaged blood vessels as this could cause scarring & the problem would certainly return anyway but no further options were discussed when I asked so interesting to hear you have tried a treatment. I literally got told there was no effective treatment & he walked out of the room to let me get dressed following the cystoscopy and he never returned & I just stood there and cried! I feel quality of life is just ignored, I’m relatively young at 37 so would like to explore my options. It is interesting to read that you’ve managed to privately find hyperbaric oxygen treatment yourself. This is an option if been keen to explore if the nhs won’t fund it for me, I wasn’t aware it would be available privately. Can I ask if you’ve experienced any side effects from it?

Regards

[AlfredSaxon in reply to Bluebell86]

Hello Again

Firstly, I don't know of any side effects from hyperbaric oxygen treatment, and I have not experienced any. There is increased pressure on the ears because most treatments are done under 1 atmosphere pressure, although I have seen patients treated outside of the pressure chamber, breathing through a mask. Before I started HBO sessions I recall having to get some health details certified by a GP. I had the treatment to cauterise damaged blood vessels; It didn't work, and as its an invasive procedure I think its best avoided! HYACYST provides a temporary lining inside the bladder, it attempts to replicate a natural process and although its not a permanent cure its keeping my severe problem at bay. It seems that derivatives of Hyaluronate are in common use, I noted that a TV advert for a hair shampoo included the product!

[Bluebell86]

Thanks for sharing about the cauterising, it does seems that’s as nasty as it sounds. So pleased it appears to be settling things down for you even if it is only for a relatively short period of time. I think I will speak to my gp/ hospital about that treatment because the bleeding seems to be much more of an issue for me lately & try to be sensible about avoiding alcohol and caffeine. I really appreciate you sharing your experience, it’s been really helpful for me & feel much better having had replies on the forum. Thank you everyone.

[Salixitch]

I’ve been through a scary period of radiation cystitis too (9 years post treatment) and all the tests to rule out something sinister. I was bleeding a lot and passing clots at times. My gynae oncology team are amazing and got all the tests done and in to see urology quickly and I was also offered the treatment above where the product is put into your bladder regularly to help calm the lining down. I’ve put it on hold for a little while as the symptoms have all settled down by themselves so if I get a flare up, they are on stand by whenever I want to start it.

[AlfredSaxon in reply to Salixitch]

Your urology team seems to be on the ball with your problem and its treatment ( HYACYST); some are not so competent, and there are some urology depts who will not use this medication. My treatment was 6 installations at one week intervals at urology followed by monthly treatment, and after I was deemed competent to do it myself at home I was given 6 months supply, plus catheters. I now get regular 6 month supplies. Your urology team may determine that the extent of your haematuria may require fewer initial sessions that I had. Incidently , the medication needs to remain in the bladder for at least 30 minutes, and longer if possible; so avoid diuretics (coffee etc) before the treatment because you don't want to "pee it out" soon after installation. Doing it at home, I lie in bed after use and can retain it for 90 minutes.

Good Luck

[Mariecapp]

Bluebell86. I completely understand your problem although I don't experience any bladder issues I have terrible bowel issues. Everyday! I use immodium on a daily basis, sometimes it helps and othe times it's useless. I do try different foods but end up with bowel issues, I go at least 5 times in an hr. I have bloating also. I am praying that you can resolve some of your issues. God bless.

[Bluebell86 in reply to Mariecapp]

Thank you Mariecapp, I appreciate your kind words.

I’ve had a call from the hospital today to offer me a cancellation apt for biofeedback bowel physio (I have no idea what it involves other than correct positioning on the toilet, I think we have all had enough of practice at that, feel like I live my life on the loo!) but I was referred last May and gave up hope of an appointment coming through. I will let you know if it’s ok any benefit incase it’s something that you haven’t tried or been offered. Think it good to share treatment options with others, can’t believe how much services differ around the country.

[Mariecapp in reply to Bluebell86]

Yes, please let us know. I've never heard of proper positioning on the toilet. I live in the USA. Amazing how we find each other. God bless

[Bluebell86 in reply to Mariecapp]

Well the pelvic physio apt yesterday was a positive experience. I’ve never had an appointment where I get the chance to discuss bladder and bowel issues together & felt really listened too. Funnily enough techno babe mentioned warm water enema’s & that’s exactly what was recommended for me to try. The parcel arrived in the post today! I tend to open my bowels anywhere between 6- 15 times a day and also experience occasional diarrhoea & incontinence but my major issue is sudden bowel obstructions (despite going toilet so frequently) resulting in hours of pain and bilious vomiting which is why I’m so keen to try anything. I was told to raise my feet on a stool and to keep my back straight and got taught how to push and not strain (similar to pelvic floor exercises for women), there’s even a you tube video called “moo to poo”!!! She also suggested trying glycerol suppositories then recommended fibre supplement called “fruits and fibre” as I said I try to avoid fruit and veg skins, peel and pips and anything that causes wind but conscious it’s an unhealthy diet. She also said pumpkin seed oil supplement is really good for frequent urination and also to try magnesium citrate as this increases water into the bowel. I had about 6 years of persistent diarrhoea but this seems to have generally resolved after eating a low fibre diet and occasional use of antibiotics for presumed bacterial overgrowth. I’m going to try her suggestions just not at the same time as I won’t know what’s working or not! Techno babe can I ask what your symptoms were for your stricture if it’s not too personal? I’ve been told I have narrowing and tethering of the bowel in various areas but a recent scan showed narrowing of the sigmoid colon which I got told could be a stricture so awaiting a sigmoidoscopy. I would appreciate any information your willing to share on your experience but please don’t share if you don’t want too I understand. So sorry that you have additional issues following your surgery, as if you haven’t had enough to deal with. I’m coming up ten years post cancer & do worry about the progression of my symptoms.

[technobabe in reply to Mariecapp]

Hi Mariecapp, I'm sure you've heard this many times but have you considered having a daily warm water enema? Most people who try it say it has given them their life back. I can attest to that. I still use immodium (1 per day) to help slow things down but it has allowed me to have an almost normal life. I just have to plan things in advance. I take 45mins in the bathroom every morning (or at night) and have 24hours of freedom. Happy to answer any questions. Best wishes.

[Mariecapp in reply to technobabe]

Can I ask you what that does? I'm willing to try anything. Thanks

[technobabe in reply to Mariecapp]

Hi Mariecapp. The warm water enema cleans out the lower colon so you are free of bowel movements for about 24-48 hours. It takes about 30-45 mins all up including releasing all water and stools from the bowel. I'd check with your doctor first that its ok to use. I use it because the radiation therapy I had in 1994 eventually caused the wall of the bowel to collapse and formed a stricture. They had to resection the bowel (removal of quite a bit) resulting in massive number of bowel movements per day.

Prior to the stricture situation I had frequent diarrhea from the radiation therapy, especially if I ate any fat. Have you tried going on a very low fat diet and see if that improves it? It did help me (before the bowel resection). Unfortunately almost every thing you eat outside the house has high levels of fat (fried food, mayonnaise, eggs, oils etc). I have to be super careful eating in restaurants etc (lucky me I have two causes of diarrhea - radiation damage and bowel resection!). I am more than happy to answer any questions.

[Mariecapp in reply to technobabe]

Thanks for explaining. I'll ask my Dr if that is ok. God bless

[technobabe]

Hi Bluebell86. I had radiation therapy for cervical cancer in 1994 when I was 38. Cancer free but endless bladder and bowel issues over the years. Somehow I have managed to deal with them and life is more stable now but with a lot of management. In regard to the urinary blood, it started a few months after radiation treatment ended. It freaked me out but was not considered unusual. Over the years I have had periodic episodes, some lasting a few months. It seemed to get worse about 15 years ago. Blood clot was stopping me urinating. I went to local hospital and they made me drink water and put a heat pack on my abdomen and walk around. After half an hour the blood clot came out. Other episodes with blood clots were resolved the same way. Drink a lot of water and hot drinks; heat pack; walk around. I have a cystoscophy every two years. At first the bladder looked terrible; lots and lots of capilliaries. I did get hyperbaric oxygen treatment at a hospital for 6 weeks. At first it didn't seem to make a difference but in the years since I haven't had any major episodes; sometimes a bit of minor bleeding. Have never figured out why it starts and it ends suddenly for no reason. Don't let me get started on the bowel issues! Best wishes with your issues!

[Bluebell86 in reply to technobabe]

Thanks for your reply techno babe. Glad to hear things are more stable with you currently but as you say not without managing symptoms as best you can. Interesting that you’ve had a positive respond presumably from hyperbaric oxygen. I think there just needs to be research done into it to know for sure but like most medical things this seems to come down to funding. Wishing you well and thank you so much for taking the time to reply with your experience and advice.

[technobabe in reply to Bluebell86]

Hi Bluebell86. Apparently HBO therapy has best results when it is done as soon after the radiation as possible. Mine was done many years afterwards but it still helped. The difference in the bladder condition was quite remarkable. I live in the country so had to move into serviced accommodation in the city so I could have it every day. It was a huge effort but I think it was worth it. By the way, a urologist told me that walking uphill or lifting heavy things could trigger the bleeding because of the increased internal pressure; not sure if thats true but I keep it in mind.