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Posts: 562
Reply with quote  #46 
Hello Daniel,

I am extremely sorry to read of your situation and fully sympathise with you with regard the devastating effect this has on yourself and your family. This is the case for most people and the strain at times very hard to bare.

I have read all you posted and that you have had 3 cystoscopies! That is an awful lot and surely the urologists could have come up with a bit more than just the broad, unhelpful and vague diagnosis of cpps.  They tend to plaster that on anything that they cannot be bothered to find answers to. For men this can cover bladder inflammation/interstitial cystitis, chronic prostate inflammation (prostatitis) and all other "pelvic pain".  Not a lot of help really because it does not lead you very far and certainly does not go anywhere near finding the root cause.  

I am horrified at your saying that urologists "switch off" when you mention IC. I am not at all surprised however, I had just hoped that by now urologists had done enough of their homework to realise that IC is very much found in males now and NOT just the female population.  My son was finally (after a fight like the Battle of Hastings !) diagnosed with IC (around age 17)  We spent close on 8 years banging on at urologists that it was IC. They just could not comprehend such a thing despite the fact that in America there are whole clinics dealing with children with IC !  And in fact after having the information from a cystoscopy suppressed we discovered it lurking in his records after being told "all OK, no problem" and IC was confirmed by another urologist, in the room, on the same corridor in the same department as a urologist who said all was fine.  It is disgusting how the urological profession is still after all these years not interested where IC is concerned in men. Something really needs to be bulldozed into these urological departments to say that anyone can suffer IC.  

Maybe COB you can continue to press for this. It is totally outrageous that males are still getting this attitude of urologists not taking any notice. They are using outdated information which is just not acceptable and thousands of men and young males and children are going undiagnosed year on year with this condition because of lack of knowledge or interest by the doctors.

As far as you are concerned Daniel B, I don't know if you have read the other posts in this entire IC mens' thread and other posts I have written up about my son's history, symptoms etc. Basically, you are most probably suffering IC (inflammation of the bladder wall and it could no doubt be affecting the prostate too - very common to have both).  You have like most people been given loads of antibiotics so the chances are your gut is in one fine mess of dysbiosis from all the good gut flora having been ravaged to death. Then once that happens the immune system goes crazy with inflammation, pain etc.  

The worst thing with this condition is that you end up in the urologists department when in fact IC is just in a way the end organ of a whole lot of other issues from IBS, dysbiosis, systemic candida, broken immune system, allergies, intollerences or any other kind of allergic reactions that impact on the bladder. Systemic candida is something doctors just know nothing about and don't want to know about. The faster you can go out of the doctors office with a prescription the better for them. But not for you.

Can you look at other postings from people who did alternative treatments, looked at allergies, food intollerences, bowel problems etc. and tried to treat candida overgrowth. Candida can get into the urogenital system is it has colonized the gut from antibiotics and set up house in there as well. The symptoms can be so diverse it is unbelievable. Maybe you can read up on candida etc. and think is this a possibility - do you h ave IBS symptoms for any other symptoms you can put together. IC isn't just a bladder disease.  The major problem is the way that the medical profession view conditions like this in isolation - the whole body works together not in isolation.

I don't know where the disc problems would fit into this and they may not even be related so I would not focus too much on this being the cause.

The other thing is try cutting gluten out of the diet - a lot of people are gluten sensitive. This does not have to mean Coeliac - far more people are gluten sensitive than are Coeliac - it is called NON COELIAC gluten sensitivity (NGCS).  It is not known well over here but more and more people are becoming gluten sensitive. It hacks at the immune system and attacks organs so again this is a possibility and certainly worth a try. Bear in mind also that despite gluten only being though of as barley, wheat, oats etc. there is new research to say that all grains have an element of gluten including corn and rice - so maybe have a go at going grain free. Also lactose /dairy free.  

These are just broad ideas but read as many of the other posts and get back to us with any other relevant information. In the meantime the uros and doctors need to be thinking a bit more broadly and certainly as you see from previous posts by others on this page - learning to live with it is not an option. If you have something attacking your immune system and causing inflammation in the body - there is no chance of living with it.  Just don't give up. This is a terrible condition to try and get over. I know this only too well from having a son with it and having such a terrible time within the medical community trying to get 1. recognition and 2. sensible help.  Just keep trying.

Posts: 3
Reply with quote  #47 
Hi davidsmum and thank you for all the valuable information and insight. I do have trouble with constipation and painful bowel movements, strange rectal smells (a bit fishy) i can smell it occasionally but nobody else can! I have put the constipation down to the tramadol and if I eat a large dish of high fibre muesli breakfast every day it keeps things moving, I have in the past suffered from IBS like symptoms, loose stools, funny shapes, thin stools and clear mucus. I have also had issues in the past with chronic heart palpitations, faster resting heart beat but that seemed to settle after a few years or maybe I dont notice it so much nowadays.

It is a sad fact that urologists in the UK dont seem to care, i am a shadow of the man I use to be and thats what I struggle with most . Doing the simple things I used to do take so much more effort and trying to mask the pain whilst trying to do stuff is at times very hard.

How is your son doing at the moment , hope he is doing ok x

Posts: 11
Reply with quote  #48 
I am a male,46 and for the last 4 years have been suffering from Urethral Pain(agony really!) and frequent and burning and painful urination but only in my Urethra. I have had every test under the sun and only in the last few weeks has inflammation been found but only in the Urethra and not the bladder. I have no bladder pain,its exclusively Urethral.

I would like to ask the forum,is it possible that Interstitial Cystitis can exist but only in the Urethra and not the bladder?

PS Ive also suffered with both Colitis and IBS since 1992 and was interested to read that these go pretty closely with IC.
Many Thanks.

Posts: 428
Reply with quote  #49 
Hi Orionsbelt,

I don't know if there is a definite answer as to whether interstitial cystisis could only manifest as urethral inflammation. IC is usually pain and inflammation of the urinary bladder but I expect that the same root cause as is responsible in bladder IC can still be causing the same symptoms in the urethra. A lot of males also will have prostate inflammation running alongside of this as well.

Doctors will always immediately think of things in terms of disease, bacteria and infection but there are many things that can cause inflammation - basically inflammation is the body trying to heal itself from something.

If you have suffered colitis, IBS type symptoms you possibly have a gut dysbiosis, imbalance of gut flora going on and this will give rise to candida /fungal overgrowth. It can start in the gut and transfer to other organs. So you could well have candida colonising the urethra.

Doctors can prescribe antifungals if they will actually believe you if you suggest this possibility. Unfortunately the medical profession tend to dismiss candida unless it is in someone who has had chemotherapy or AIDS etc.  But it can affect anyone especially after antibiotics or antibiotics in the past.  With women it manifests as thrush but in men it is not so easily seen.

You could try things like strong garlic Allicin Max, a whole range of herbal and natural antifungals (you can search these on the internet under candida etc.)  Maybe try some probiotics (strong ones).

Its useful also to buy some dip stick urine sticks from a chemist (you can get the ones doctors use) - they allow you to self test for a whole range of things like microscopic blood and other things.

Also you could try thinking if you are allergic to any foods or have intollerence (keep a food diary) or try cutting out gluten and grains as these can have an auto-immune effect on the body and it widely known that IC is of an auto-immune nature. In chronic problems of the urinary system candida and fungal overgrowth can really be the root cause and if the immune system is weak for some reason (colitis, IBS) it gets the upper hand.

See some of Davidsmum's posts as this is discussed a lot.

Hope you can soon feel better.  

Posts: 11
Reply with quote  #50 
Thanks Icy.

Ive only had Urinary problems for the past 4 years but bowel problems have existed for over 20 years and I was in excellent urological health before the last 4 years so I find it hard to see the connection,although I'm not dismissing it at all. Ive also tried some anti fungals at some stage and they didnt work either unfortunately. I totally agree regarding the auto immune relationship but doctors dont seem to have developed anything much to combat this in many people at all.
Probiotics and myself dont agree at all I'm afraid but anything of an anti inflammatory nature is helpful as Ibuprofen is particularly useful on a day to day basis.

Thanks for taking the time to reply.

Posts: 428
Reply with quote  #51 
Hi Orionsbelt,

It's sometimes necessary to take a prolonged course of antifungals (either prescribed or natural). Some people can react to probiotics - this can be for various reasons including what is called Herxheimer effect or die off - where candida are displaced by probiotics and the system gets flooded. But also sometimes the probiotics could be reacting with your own gut flora. It's a shame when this happens as probiotics would help replenish the digestive system but maybe some are just allergic to them as after all they are bugs going into the system.

With regard cutting out gluten and all grains (rice, corn maize, quinoa all have a kind of gluten protein in them and Coeliacs and gluten sensitive people can get the same response to these when they affect the immune system. But casein in milk also can cross-react as it has similar protein makeup as gluten.

It might be worth trying all these things out of the diet to see if at least it has an impact on the IBS symptoms which in turn can cause inflammation in the mucous linings and tissues.

Posts: 11
Reply with quote  #52 
I have tried every diet under the sun in last 20+ years and there are no common denominators for my IBS in dietary habits at all.

I am going to ask about a urethral steroid injection to cure urethral inflammation as it was a steroid injection which almost completely cured my epididymitis overnight. 
Epididymitis is often part of the symptoms of urethritis and causes inflammation in the tube leading from the testes to the penis and urethra,for those who dont otherwise know.

Posts: 187
Reply with quote  #53 
Hi danielb,

I read your post with interest.  I too have back problems.  Same place as you.  I am wondering how things are and if you ever got a diagnosis as to whether your  urges, pain etc are back related.  And if so did you find a specialist?

Many thanks

Posts: 428
Reply with quote  #54 
Hi Daniel,

You wrote on this Forum some time back about your situation and how distressed you were.

Have you been able to see anyone else regarding this?

How are you feeling?  Have things got any better?


Posts: 562
Reply with quote  #55 
This link regarding interstitial cystitis and Non-Coeliac Gluten Sensitivity (NCGS)  - not Coeliac - may be of interest to males on this site.

Posts: 4
Reply with quote  #56 
Hi everyone
I am new to the forum and have been advised by Consultant to have Botox Injections for a very over-active bladder/Interstitial Cystitis. I was wondering if any one cane give me any advice on the procedure and any side effects I should be aware of.
Any help or advice would be greatly appreciated.
Many Thanks.

Posts: 428
Reply with quote  #57 
Hello Eddiebear

I do hope that someone on the forum will be able to advice about Botox.

I would never have this done as I have read that Botox isn't good at all and can cause all sorts of additional problems. Increasing numbers of doctors and consultants seem to think Botox is an answer to things but I really would need to see evidence that this is a good thing and I think there is little documented evidence re Botox and IC. However, there may be people who can advise better than me as it is only what I have read myself from other forums in the past.

However, what I did wonder is if your consultant really does have a lot of knowledge regarding IC and its nature as an auto-immune condition. Have you tried a great many other avenues before embarking on such a treatment as Botox which would be very harsh on the bladder?

Possibly you have had a lot of antibiotics in the past and other drugs for your condition? If so these can have a really bad effect on the mucosal linings of the gut and bladder and therefore send the immune system out of balance and then create auto-immunity. Good flora is so important for all organs of the body. 

Have you considered diet and possible candida/fungal overgrowth (comes after antibiotics), dysbiosis, systemic candida etc. Even if you do not have digestive issues you can still be intolerant and highly sensitive to foods like gluten - have you ever tried a truly grain free diet (not just wheat and the obvious gluten grains). It is now known that people sensitive to gluten can also have cross-reactive sensitivity to rice and other grains like buckwheat, quinoa which are the obvious ones that peolpe use instead of gluten.  There seem to be a lot of connections with gluten and IC. 

Have you tried candida diets and using probiotics to try and help the immune system.

What other treatments has your urologist suggested?   The problem with this condition is that everyone is seen in isolation by one person - a urologist. This might seem the obvious person to see when you have bladder problems and will immediately be the department you are sent to with urogenital problems  but chronic conditions often need to be more fully assessed by an immunologist - to look at the whole body system. IC is rarely just a bladder condition but a product of a whole lot of other possible immune dysfunctions.  

This is one of the great drawbacks with this condition is that IC is looked at so narrowly by consultants and inflammation needs to be addressed in a much wider aspect. Getting to the root cause of something is better if possible than just treating the symptoms so any more intensive testing and assessment would be beneficial for you.

Verified BHUK Member
Posts: 52
Reply with quote  #58 
Hi Eddiebear,
I had botox bladder injections in December. I was supposed to come out of hospital on the same day as the procedure. Unfortunately I woke up from the procedure in so much pain that I ended up staying in hospital for two days. It took a month for me to feel like I could manage again. Since then I feel like I can feel like part of my bladder is frozen but it has not helped with pain or intense feelings of pressure. It has however helped with the amount of times I have to get up at night to pee.

Personally I have a family to look after and even though I started acupuncture treatments I could not afford to spend money on myself when my children need uniforms. I work full time and am so exhausted and time poor that I will try anything suggested as we all have interstitial cystitis for different reason.

I am still glad that I tried the botox even though I don't think that it worked for me.

I am now on elmiron but have tried bladder instillations in the past. Not sure that I will stay with elmiron though is it makes me feel brain fogged and nauseus.

Good luck

Posts: 105
Reply with quote  #59 
Have been suffering since January, father is celiac, was taking super strength pro biotic and natural anti fungal was getting much better frequency went through the floor and sleeping through the night but as I've weaned off the above the symptoms getting bit worse so going back on that regime. Have heard about the link with gluten but would elect to be better after five months or maybe fungal overgrowth is additional problem.

I often read ic should cause tenderness when your pelvic area is touched by urologist but I don't have that and most my pain is urethral.

Posts: 428
Reply with quote  #60 
Hi UK2004,

There is a lot of links with gluten sensitivity (even if not coeliac diagnosed) and bladder. However, sometimes ALL grains have to be removed as there can be cross-over reactions to the gluten and gliadin in other grains which make the body interpret those as gluten.

If your father is diagnosed Coeliac you could have a genetic test done to see if you have the same genetic make as you may still come back as negative on coeliac tests. Leaky gut and fungal overgrowth are definite players in this condition and they can come back if a strict regime is lapsed unfortunately. It doesn't seem to take much to get candida going again.
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