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JillB

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Reply with quote  #31 
Hi

Just thought I'd leave this link to a natural product that has been developed in Iceland.


James

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Reply with quote  #32 
I think I may have this although I won't know until further investigations are performed.

Getting me down is an understatement.
Davidsmum

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Reply with quote  #33 
Hello James,

You posted on the COB Board in October in the men's section . Have you had any results yet to confirm whether you have IC or not? What symptoms do you have?  IC is a very debilitating condition and the stress of dealing with it, is enormous.  Keep us posted as to the outcome as men have a hard time getting a diagnosis and recognition of this condition.
James

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Reply with quote  #34 
Quote:
Originally Posted by Davidsmum
Hello James,

You posted on the COB Board in October in the men's section . Have you had any results yet to confirm whether you have IC or not? What symptoms do you have?  IC is a very debilitating condition and the stress of dealing with it, is enormous.  Keep us posted as to the outcome as men have a hard time getting a diagnosis and recognition of this condition.


Hello  Davidsmum,

Many thanks for your reply.

I have recently had a CT KUB scan and awaiting results of that. Also to receive a flow test.

Been feeling better for the past month, PSA was 0.8, so nothing to worry about there.

I do tend to think though that I just happen to get an irritation of the bladder ever so often, trouble being that it can last for months before it settles, and I don't want to start taking vesicare unless I really need to. 
Davidsmum

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Reply with quote  #35 
May be of interest to males on this forum. Clearly the case of men often being misdiagnosed or not given a diagnosis of IC and figures being much higher than recorded in the past, is very much the same as here in the UK. Also that men with IC can have chronic prostatitis at the same time which clearly overlap.

Hopefully more urologists will open up their eyes to the fact that IC is not just a women's condition as  their medical training wrongly tells them.

The symptoms of interstitial cystitis/bladder pain syndrome (IC/BPS) and chronic prostatitis/chronic pelvic pain syndrome (CP/CPPS) are widespread among men in the United States, according to research published in the January issue ofThe Journal of Urology.

After developing validated case definitions to identify IC/BPS or CP/CPPS in the RAND Interstitial Cystitis Epidemiology study, Anne M. Suskind, M.D., of the University of Michigan in Ann Arbor, and colleagues used population-based methods to screen 6,072 households by telephone for men with symptoms of IC/BPP or CP/CPPS. A total of 149 men met the inclusion criteria and completed the telephone survey.

The researchers found that the weighted prevalence of IC/BPS was estimated at 4.2 percent for a high-sensitivity definition and 1.9 percent for a high-specificity definition. The weighted prevalence of CP/CPPS was estimated at 1.8 percent. These values would equate to 1,986,972 men with CP/CPPS in the United States and 2,107,727 men with the high-specificity definition of IC/BPS. The estimated overlap between high specificity IC/BPS and CP/CPPS was 17 percent.

"The prevalence of and the degree of overlap between IC/BPS and CP/CPPS in U.S. men are higher than previously thought," the authors write. "These estimates suggest that these conditions are widespread and that they might be underdiagnosed by physicians."
ModeratorKate

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Reply with quote  #36 
Thank you Davidsmum.

Always very helpful, to see extra information and ongoing research, especially for our male counterparts.

Regards
Kate

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James

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Reply with quote  #37 
Yes, thanks for that important information.
JamesWright

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Reply with quote  #38 
Hi there, newly joined up member here. I am a 39 year old male from Glasgow, Scotland.
I have been having problems with my bladder since last September. It started off having really bad urine infection for which i was prescribed Trimethoprim. Seemed to kill the infection but i was left residual pain and a feeling of pressure in my bladder. Went back to the Go and as usual they were as helpful as a chocolate teapot! I then suffered another UTI and they prescribed me Augmentin and referred me for further tests as he suspected Kidney stones. Have so far had Xray, ultrasound, blood tests, prostate exam, urinary flow study and a CT scan, all negative, no stones. In the meantime i have had another UTI, and yet again was prescribed Augmentin which has really done a number on my bowels. Going for a cystoscopy this week so hope they find something untoward. After reading these forums i really feel that i may be suffering from IC. In addition i am suffering from irregular bowel movements and bad wind. Feeling utterly worn out and rather depressed. Help!
Davidsmum

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Reply with quote  #39 
Hello James W.

Thank you for posting up on the men's IC thread. I am very sorry you have to post up at all as these are the most horrendous conditions to deal with, but men get a totally poor deal altogether with regard bladder, prostate, interstitial cystitis symptoms.

Your comment about the GP being "as helpful as a chocolate teapot" made me smile but at the same time made me want to cry actually.  I am afraid to have to say I totally agree - the ignorance from doctors is shocking to say the least, but what also is a nightmare is the ignorance of so many urologists and consultants who show equal ignorance and commitment to helping people get well from this debilitating illness.

You have had a lot of antibiotics which is going to have had a major impact on your bowel gut flora. Any amount of antibiotics, especially the broad spectrum antibiotics like you have had will have had a devastating effect on your internal ecology. It is quite shocking that GPs, despite everything that is now known about antibiotics and their dangers, are still persisting in handing out these drugs without doing intensive testing first.  Most of the time these bladder problems do not have a specific bacteria and the norm is for GPs and even consultants to dish out the antibiotics, then later inform the patient that actually there was no traceable infection. So consequently you have had a nice lot of antibiotics for nothing and ended up with other problems.

One major problem with modern and Western medicine is that it is compartmentalised and urologists only look in one direction - the urinary organs and that is where it stops.  They do not consider how the gut and immune system can be impacting on the bladder.

I don't know if you have ever had antibiotics before all the UTract problems for anything else? This can be a common pattern - the immune system gets broken down first and then the bladder problems begin. 

Men get a particularly raw deal with regard interstitial cystitis. Trying to convince any consultant that a male (or even a young child) can have IC is well near impossible and took us over 8 years to get recognition.  They generally palm you off with all sorts of poppycock about "men don't suffer from IC - it's only a womens' condition".  Just make sure you don't go down that path - anyone can suffer IC - men, women and children of all ages ! Everyone has a bladder and just like the gut it can become easily inflammed.

It may be worth looking up a bit of stuff on "leaky gut syndrome" as this may be connected. The more informed you are the better, although I doubt if any urologists would have a clue what you were talking about and would deny any connections with the gut and the bladder. Crazy - that medical science can be so insular in its thinking. 

You are fortunate in that you do not seem to have been suffering this condition for very long if it was since September - many of us have had it for years and could not get help or start to think more holistically. By the time many of us on this board actually were diagnosed properly, there was a lot of work to be done in trying to heal.

It is also likely that maybe your prostate is inflamed too as the two go together - IC and prostatitis are very connected.  But more than anything you must see your body as a whole and somehow try and get that through to the docs.

Let us know what happens with regard the cystoscopy. Make sure you get all pictures and thorough information from this as we were never given the truth on this and the pictures were shoved away in the files and we were told "everything fine" - it wasn't. We found out many, many years to late.

I am sorry to have to say that the whole urological situation is dire for people with IC - the knowledge about it within the medical profession is appalling and despite any attempts to try and make the majority of consultants in urology think differently about this condition - it is pretty impossible. Old knowledge is still being perpetuated and the first thing that is reached for is antibiotics.

Your symptoms certainly sound like IC - inflammation of the bladder wall.  You may like to read a new book out called "Painful Bladder Syndrome" by Philip Weeks. He is a master herbalist and naturopathic practisioner.  His book echoes a lot of what is written in other holistic books on IC, but worth a read. It does feature little drawings (always women again unfortunately.... when are men going to feature in books !!!!!) but it will give you another perspective on things. He is a very knowledgeable author.

I hope some of this advice helps - I just wish I had known 15 years ago what I know now about IC as our story is a long and painful one and one we are still trying to sort due to a lot of misdiagnosis and wrong treatment.
JamesWright

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Reply with quote  #40 
Thanks for replying to my post. In answer to your question i did have a heavy course of penicillin a coupke of months before to clear up a bad case of tonsilitis, is that possibly connected? My GP practice is made up of 4 docs, i have had so many emergency appointments with these symptoms i have now seen them all. One GP out of the 4 is the guy who has actually pushed for the tests. The other 3 were less than useless. What frightens me with this condition is the lulls when i am pain free and i start to think its going away, the meds are finally working, and a week later boom i am back to being in pain. The levels of pain vary from a mild ache like pressure, to back breaking agony in my groin and bladder. If this is something i have to learn to live with i can deal with that. Its the not knowing whats
wrong that worries me.
Davidsmum

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Reply with quote  #41 
Yes, it could well have been a hefty dose of antibiotics for tonsillitis that triggered things for you. My son had many antibiotics before he started with the bladder problems for things he did not really need them for and for which we as parents at the time resisted but GPs always tell you there is no hard in antibiotics. We now know very differently.

Antibiotics break down the mucosal surfaces throughout the whole body - they are also not selective in the bacteria they kill so they kill everything in their wake. Unfortunately the good gut flora are fragile and they have an enormous number of functions. In fact what they do for the body in terms of regulating the immune system is still unknown and they are discovering these functions all the time. What we do know is that good flora help you digest your food properly, they create vital enzymes which control hormones and carry out cellular functions, they make B vitamins and the K vitamins, they control bacteria, fungus and they help digest things like milk (lactose etc). With a messed up gut ecology, fungus takes over and colonizes wherever it pleases on the mucosal linings and that includes the genitourinary tract. Once candida/fungal overgrowth flourishes in the gut due to the lack of good gut flora is will get into the bloodstream and from there can travel anywhere.  The genitourinary system is a favourite place for it.  And all the toxins that are produced cause inflammation and pain.
Eva

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Reply with quote  #42 
Re men featuring in books about bladder problems: "Teach us to sit still: A Sceptic's search for health and healing"" is a book by Tim Parks about his struggle to overcome chronic bladder problems.

Eva

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Reply with quote  #43 
@JamesWright: IMO, no-one should have to learn to live with IC/bladder problems. I was told to learn to live with it - I didn't accept this. After being in despair for a long time, trying all sort of therapies - followed the Broth Culture route and longtime ABs - no improvement at all - just gave me IBS and yeast problems which I had not had before. Tried homeopathy, acupuncture etc eventually found an alternative doctor (of Chinese Medicine: treatment was diet and herbs), and it took a long time and it was expensive but it worked and now I have got my life back. There is a solution out there - maybe different solutions for different people. Just keep searching. Don't give up!
danialb

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Reply with quote  #44 
Hi all

I am a 32 year old male who has been having frequent urination, groin pain, back pain, painful urges since 2010, in march 2012 i began suffering terribly to the point I have no life. I am in daily pain, can only drink water as anything else makes my bladder frequency and pain go wild. I have a wife and 2 children whom this is affecting to . I have had every uri test going including 3 cystoscopies with cpps as a weak diagnosis. My urologists switch off when you mention IC. Had most antibiotics also with no help and i now take Tramadol and Duoloxetine to try and numb the pain. I cant begin to explain how much this has affected me and having GPs and Urologists telling me I have to live with it is sickening and destroying, 4 years ago I was a normal happy dad who could do everything I wanted for me my wife and my kids , now I can hardly do anything. How can anyone be expected to "LIVE" like this?? There is no help or concern in the UK for people with this condition.

I also have lumbar disc problems with a recent discectomy operation on L5/S1. They left me with that herniated disc for over a year, my urinary issues started in 2010 when it was just a bulge and a number of doctors......not urologists think its connected and I have damaged nerves. I no longer know where to turn for answers or help. I have seen doctors/specialists in Norfolk and Suffolk and I am not confident they have taken my back issues seriously or ever been concerned about my welfare.
ModeratorKate

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Reply with quote  #45 
Hello danialb.
I am so sorry to read of your problems.
Welcome to our Forum, and I do trust that reading through the many posts on here , you will realise that sadly you are not alone, hopefully, we can give you some support .
This dis-ease is so difficult to find and answer, as we are all different and react in different ways .

Here are a few further suggestions for you to consider.

In a few days time 25th November, you could telephone the Specialist Nurse, she is available through the COB Office.10.30.to 14.30.    0121 702 0820
Also have a look at the COB website http://www.cobfoundation.org/ you will find so much more information and contacts, including a Men only advisor.
Complete the Bladder Survey.This will help with future plans and advice on treatment.
Consider becoming a member of COB, as this will give you access to even more assistance and information, including a Welcome Pack, with, upon request, a special pack to give to your Doctor,.

I do hope these suggestions will assist in a very small way.

Kind regards and do keep posting also in the individual Forums.

Kate

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