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Davidsmum

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Reply with quote  #16 
Hello Peter,

Sorry to hear you have been diagnosed with IC. It is a very distressing illness and a real understanding and true knowledge of the condition is sadly lacking.  Elmiron does take a long time to take effect from what I have understood about the way it works. If you were not getting any bad side effects (in many it can affect the liver) then you should be given the chance of longer.

Have you tried other methods like diet - reducing sugars, yeasts, irritants - trying a candida diet and the IC diets.  Have you had a lot of antibiotics in the past as these will have had a bad effect on your digestive flora and you may be deficient. Taking a probiotic may be of help to you. 

People of all ages can get this, my son had it from teenage years and it is very hard for men to get a diagnosis, especially young males.  Also men can very much suffer from chronic candida - it is often seen only as a womens' problem (as can often be the view on IC), but anyone can have this, it just may not be so obvious in men.

Worth a try at looking at diet and building up the immune system - it does not harm to cut out sugar first of all as it is an irritant for the bladder.
PeterThornton

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Reply with quote  #17 

Hello Davidsmum, Many thanks for your comments, yes tried IC diet but I have not cut out yeast or sugars, although, don't have many sugars only Honey, could this be an irratant too? Thanks again


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Peter Thornton
Davidsmum

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Reply with quote  #18 
Hi,
I guess honey could be as it is very sweet. There are some honeys like Manuka honey that is supposed to be good for the immune system (very expensive) but as far as I know this is also very sweet.
PeterThornton

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Reply with quote  #19 
Recently I went to Italy for a holiday and whilst there I had reason to go to the state hospital with severe pain due to IC. The Dr examined me and gave me a Cystoscopy and confirmed I had IC (which I had already known). However, in Italy they are the treatment they are giving is "Triogonal injection of Botulinum Toxin A in Patients with Refractory Bladder Pain Syndtrome/Interstitial Cystitis" apparently the success rate is very high.
All patients reported subjective improvement at 1 and 3 months follow-up. Pain, daytime and nighttime voiding frequency, OSS, and Qol improved significantlhy. Bladder volume to first pain and maximal cystometric capacity more than doubled. Treatment remained effective in 50% of the patients for 9 months. Retreatment wasw also effective in all cases, with similar duration.
A significant, transient reduction in urinary NGF and BDNF was observed. No cases of voiding dysfunction occurred. The low number of patients and the lack of placebo arm are obvious limitations of this study.
Conclusions: Trigonal injection of BoNTA is a safe and effective treatment for refractory BPS/IC.
If there is anyone out there who can throw any more light  on this treatment please reply.


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Peter Thornton
IrishInLondon

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Posts: 12
Reply with quote  #20 
Hello guys, 

I posted in the main forum - but as I'm a male, 29 years old - i'm also posting here. I haven't been diagnosed yet but pretty sure I have IC. I'm on here just to be able to speak to people about it. I had a pretty bad case of anxiety last year - had to take time off work and my parents look after me. But I just can't do that to them again with this condition - don't want to put them through all the worry. 

Feeling so lonely, isolated and depressed right now. 

Conor
Davidsmum

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Posts: 561
Reply with quote  #21 
Hello Conor,

I am sorry to hear your may have IC. This is  a very distressing and debilitating condition and men generally have an appalling time getting any recognition from their GPs and even if they get as far as the urologists, diagnosis is often difficult. Despite all the information now on IC, here in the UK urologists are slow to accept that men and children can suffer IC and that it is indeed not just women who have this. Many men are often misdiagnosed with prostatitis and given endless antibiotics even when there is no infection at all. These antibiotics can be very damaging to the fragile gut flora and thus have an impact on the whole immune system.  An inflamed prostate is often part of IC and the pain can be unbelievable of the two things together. 

IC is a desperately isolating condition and can leave one feeling so low and depressed and in a "no-man's land". Knowledge on IC is very lacking but there are things that can help. My son had this condition from 14/15 ish - took years and years to get anyone to recognise it and accept that young people can get this. Anyone can get IC so your doctor is very wrong brushing it aside. My son struggled through university with this so I know just what it can do to you.
Please email me through the board if you would like to talk about things that may help or regarding a support group in London area.
PeterThornton

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Posts: 7
Reply with quote  #22 

I have IC and have had it for 6years tried all the usual remedies but no luck. My urologist suggested Botox, has any male had this treatment and if so kindly advise the Pro's and Con,s

 

 

 

 


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Peter Thornton
Davidsmum

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Posts: 561
Reply with quote  #23 
Hello Peter,

Can't advise on Botox as no direct personal experience, but from what have read about Botox use, not just in interstitial cystitis but in other condition, would be very wary of taking that route.

Have you tried cutting gluten and wheat out of your diet? Gluten can have a bad effect on the bladder. You don't have to be Coeliac, you can still be gluten sensitive or intollerent without Coeliac. Gluten is responsible for a lot of auto-immune symptoms and IC is often linked with it.  Maybe worth trying if you have not already tried this. 
JayJacobs

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Reply with quote  #24 
First of all thank you creating this forum. It is such a great resource and outlet to talk to others about what I am experiencing.

For the last two years I have been dealing with IC. I have tried changing my diet, medication and am considering surgery.

I found this treatment called Uracyst. Has anyone tried it? Any thoughts, besides it being expensive.

Thank you,

Jay
ModeratorKate

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Posts: 1,610
Reply with quote  #25 
Hello Jay
Welcome to the Forum, a place where you can share your experiences.

So sorry to read of your symptoms.
As you are already discovering,there are so many things to aggravate our problems and do hope you can find some more help and advice from others experiences.

I would urge you to become a member

http://www.cobfoundation.org/page/membership-benefits.
http://www.cobfoundation.org/page/how-to-join-us


They will send you a wonderful information pack which you can also share with your friends and family, to help them understand.
In the meantime.Do have a look here:
http://www.cobfoundation.org/page/uracyst
Hope this may be of help.

Kate


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Ian2402

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Posts: 49
Reply with quote  #26 
Hi Jay
Sorry to hear you are suffering too, like you I have had IC for two years and I have had most of the mainstream medical treatments without success, however I have not heard of Uracyst. It sounds similar to Remso 50 (DMSO) or Cystistat in that it is a distillation into the bladder. I had both of these and Remso 50 was very uncomfortable and I had to stop after 3 sessions. Cystistat was easier to take however it didn't make any difference to me. All these treatments seem to work for only a few people. I wouldn't be prepared to try Uracyst myself unless there were a lot of positive reports. I am now following the ICAMA diet which has definitely helped, go to acupuncture weekly and take probiotics and other natural medicines.  I'm a lot better than I was a year ago but have plateaued a bit, however I'm told it can be a long slow process back to some sort of normality. I too thought about having surgery recently but having researched the consequences have decided to persevere. As my Urologist said you can be swapping one set of symptoms for another. You can download a PDF from University Hospital of South Manchester NHS Trust on Bladder reconstruction. The statistics are not inspiring and there are a number of possible consequences. Hang on in there and try every alternative avenue first.
Best wishes
Ian
vipsys

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Posts: 2
Reply with quote  #27 
I am a male 43 years old and have been suffering from an overactive bladder for over 20 years. I could manage with it for most part of last 20 years but offlate it's becoming unmanageable. I may add here that I do not suffer from any pain while passing urine.

I do not suffer from incontinence in the sense that I can hold on to the urge to pee during daytime. My troubles start during night time. I have a constant feeling to pee in my lower abdomen and when ever I go the bathroom , some quantity always come out. I also have to strain to get those drops out. I can be sitting at one time for 30-45 minutes at a time and still feeling the urge to pee. Also I can only strain the last few drops out while squatting in the oriental style and can't do the same while standing or even sitting on the commode in the western style. Then suddenly I would have a feeling of having forced the last drop out, I would immediately rush to the bed, fall on my stomach and press the penis and sorrounding area hard against the bed. I prefer sleeping on hard surfaces and not on soft mattressess so I can press hard against, the harder the press, the better the urge to pee is suppressed. This will provide me some relief against the constant feeling to pee. I was able to slide into sleep for any period between 2 to 4 hours after this and then would be woken up due to a slightly erect penis and a signal to the brain that I needed to pee again. The same process would start again. I also noted while experimenting with sleeping postures that sleeping in a fetal position, on any shoulder side, with both legs pressed against my abdomen and penis being squeezed between the legs and abdomen also provided some relief. 

Also noted that after sex, the feeling to pee toned down a bit and sleeping was easier. I also suffer from constipation and have noted that after a bowel movement, the urge to pee tones down a bit.I have been to urologists off and on and have had uroflow studies, a cystoscopy, MRI, all sorts of test performed and everything turned out normal. Urologists have prescribed, flowmax, enablx etc but they all seem to make the symptoms worse so I would stop taking them and not go to that urologist again.

Recently I have noted that the feeling to pee does not go while trying to sleep even in the fetal position or by pressing the penis hard against the sleeping surface. It has wrought havoc with my sleep and I haven't slept for 10 days now. I feel drowsy but can't get my mind to slide into sleep as it is always getting constant signals to pee. It has become so bad that I now dread sleeping and stat getting anxiety attacks as the sun sets. My urologist ( the latest one) recently prescribed Phenozopyridin asking me to take it for 30 days before he decides on the next course of action.

I am at my wits end and suffer from depression and this is affecting my family and work life.

DOES ANY ONE FACE SIMILAR SYMPTOMS AND IS THERE SOMEONE WHO HAS HAD SOME TREATMENT FOR SUCH SYMPTOMS. I SHALL BE GRATEFUL. PLEASEEEEEEEEEEEEEEEEEEE!

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vipsys
rockchick28

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Posts: 98
Reply with quote  #28 

have you tried vesicare?...it didnt agree with me..but it stops you weeing constantly..or feeling like weeing..nightmare for ya..hope you find something soon..peace.

PeterThornton

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Posts: 7
Reply with quote  #29 
Quote:
Originally Posted by DawnCOB

Elmiron excerpt from COB Foundation Magazine issue 59 2009
 
Taking Elmiron has improved my symptoms I am now in my 70th year but realised that something was wrong in 1993 when, completely out of the blue, I had a gripping sensation in my bladder whilst bending down and realised that I had leaked some urine.
 
My GP checked my prostate, which seemed fine and referred me to a urologist in Wakefield who called me his ‘enigma patient’ as he had rarely seen these symptoms in a male. By this time, the pain was affecting my lifestyle. After a referral to a consultant at Leeds Royal Infirmary, I was offered a course of Elmiron.
 
I have now been taking Elmiron for 13 years and the improvement has been phenomenal, I almost consider my bladder to be normal. My consultant has recently asked me to try reducing the Elmiron intake from three tablets a day to two and I have not noticed a change.
 
I consider myself very fortunate to have been treated by consultants who have been very sympathetic to all stages and even this helps
 
Mr M B

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Peter Thornton
PeterThornton

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Posts: 7
Reply with quote  #30 

HI with reference to you taking Elmiron I would be interested in knowing how long you started taking Elmiron before you noticed that it was doing you some good. I have been taking Elmiron for approx 8 months and I have not noticed any difference., do I have to persevere for longer


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Peter Thornton
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