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DawnCOB

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This is the Men's IC thread to exchange experiences and aid in locating other male forum users in a board brimming with ladies !
 
BHUK - (formerly COB) has a male co-ordinator Gordon who is happy to talk to other male members via telephone or email. If you would like to contact Gordon email COB Office info@bladderhealthuk.org
 
Below links to male related threads/positive stories that you may find of interest. 
 
Let other guys out there know they are not alone by posting below and introducing yourself !
DawnCOB

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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
DawnCOB

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Acupuncture is Helping My Bladder
 
Before commencing this course of treatment IC was controlling my life. Even on relatively short car or bus journeys. I had to stop urgently anywhere I could find for pee breaks. This has included hedges and farm fields. May stops now are back those normally taken. I used to have yo get up 3 or 4 times a night to visit the toilet. Now I am down yo once or none per night. I was regularly self-catheterising every day and night. During my treatment my need to self catheterise got less ad I have not used a single catheter and peeing is more normal.
 
I experienced groin pain occasionally , even on the medication and had to take a suppository painkiller. Now I experience no pain - in fact, I have forgotten about the groin pain related to IC.
 
My general; heatlh has now improved significantly. I feel well, have a lot more energy and have been doing a lot of exceptionally strenuous jobs on my house without getting overly tired. Alan .
DawnCOB

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Male IC sufferer writes :

 
Paulc2011

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Reply with quote  #5 
Good Morning,
                    My name is paul, i'm 26 years of age and since October of last year I have been suffering from what is believed to be Interstitial Cistytis. It came as quite a shock to suddenly be experiencing extreme amounts of pain, not only on visits to the bathroom but constantly and not have any idea as to what it was.

My first thoughts were some form of bacterial infection. After many tests later and every antibiotic tested the symptoms seemed to get much worse. I visited the doctors a few times barely able to walk complaining of this excruciating pain constantly with toilet visits every 25 minutes even while I was taking co-codamol and tramadol and diclofenac. The doctor examined me and replied "well I can't feel anything" and these are the strongest pain killers I can pescribe.

I felt angry, scared and really didn't know what to do or where to turn. The next day was unbearable, I was forced to go to A&E.
After the hospital visit with a letter in my hand saying to the doctor that there actually was something wrong with me, I was able to get a referal to the urology clinic. Before my urology appointment I was forced to go into hospital due to the pain, Also I could not sleep as I was needing to visit the toilet every 30 mins or so even at night.

After a MRI scan, cystoscopy and biopsy it has been confirmed as Interstitial Cystitis. I also like the gentleman above me am the head of urology's "most interesting" patient as it is odd for it to happen to a male, and extra strange to happen to a 26yo male.

Well now I am on my fith treatment of gel installation and taking morphine, co-codamol, diclofenac and instillagel 4 hourly.

 I can say with conviction that my life has ground to a halt since october, I have been off work for months not able to do much at all. The procedure hasn't yet taken effect and the medication is starting to effect concentration, memory, causing fatigue and altering my skin.

I don't think I have yet come to terms with the condition. All I can do at the moment is research what I can do to help myself. My family have been amazing in supporting me but even they feel helpless when i'm in so much pain and there is nothing they can do. I just hope that one of the procedures help. I'm finding life very difficult at the moment but don't want to put more pressure on my parents, they worry enough as it is. They don't know that I cry when i'm on my own.

I've waffled on far too long. Kind Regards Paul
coboffice

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I have sent you an e-mail off forum.

Best wishes

Susannah Fraser
COB Office

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Davidsmum

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Reply with quote  #7 
Hello Paul,

I have sent a separate email to you.  What you are experiencing is much the same as so many on this board. IC is a desperately distressing condition and often men take longer than women to be diagnosed and young males often end up with a misdiagnosis as it is a little understood condition.
Please see my email.
Best wishes
Ian2402

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Reply with quote  #8 
Hi everyone

I'm 58 and I've been suffering from IC for 19 months and off work for 12. Initially I was treated for infections and it was only last May when I saw my 3rd Urologist that I was diagnosed with IC. I've had distillations of DMSO/REMSO 50 and Cystistat, taken Elmiron with Atarax for 4 months but it didn't help. I felt the Elmiron was making my joints very stiff. I am amazed to see that others have taken Elmiron for years as there are many stories of it causing liver damage and also I am told it caused blindness in some patients. I stopped primarily because I felt it was causing more harm than good, it was costing £300 per month and the local PCT were not prepared to allow my GP to prescribe it as it is not on the British formulary.  I tried Kinesiology for 6 months and I have been having acupuncture since November. I had some improvement and was able to drive myself to/from Maidenhead which was a great step forward. Unfortunately I had a bit of a relapse which may have been caused by an infection. I have severe pain almost daily, with debris and blood in the urine  and my bladder capacity reduced to 30mls. I decided to give up the Kinesiology and went to see Deborah Grant at the beginning of April. I have been on a very restricted diet for nearly 4 weeks with herbal medicines. I  haven't seen any improvement yet but I am due to get the results of tests at the Biolab next week. I hope that the tests will provide an insight into what is causing the problem and she can relax the diet because it's very boring and I've lost 4 kilos.
I am still taking amitriptyline at night and occasionally tramadol, and codeine for pain relief, but recently tried BuTrans, Transdermol patches of Buprenorphine.  I'm now on the highest dose of 20 microgram/hr but it does seem to be helping as I rarely have to take anything else.
I am not keen to have the operation to remove the bladder and reconstruction with a part of the intestine, but if I don't get some improvement this summer I might have to go down that road to get my life back.  If there is any man out there who has had that procedure I'd like to hear about the post operative positives and negatives.

Ian
rick

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Reply with quote  #9 
Hello Ian,

Can I ask you did you have to insist with your gp to get a referral or did he send you to a urologist straight away?
Ian2402

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Reply with quote  #10 
Rick

After the second lot of antibiotics didn't help my GP suggested that he refer me to a Urologist. I was pleased about that but I would suggested it myself if he hadn't.

Ian
pbxer

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Reply with quote  #11 
Hello everyone,

I have posted in the main board asking if I have IC or OAB.
I won't re-post here but any advice for a male would be good, I'm pretty desperate, I feel the same as the other Paul a couple of posts back.

Paul
Davidsmum

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Reply with quote  #12 
Hello Paul,

Your case sounds very similar to what is IC. So many men are constantly misdiagnosed with IC - often given long courses of antibiotics for prostate inflammation. Many urologists only see IC as a womens' disease and men are neglected. There is a tremendous lack of knowledge and understanding where this condition is concerned.
All ages of men can have this - my son had it from young and it took years to get any recognition of it.

You may have seen the discussion on the Embarrassing Bodies programme that was shown last night and which had a small feature on IC. The programme was not received favourably by many as there was so much misinformation. But this is the world of IC - lack of knowledge and misinformation the whole time. There is a young lad of 14 who has posted up on the Embarrassing Bodies IC page so that shows just how this condition is affecting all ages.

Please email me if you wish as have a lot of experience of the horrors of this condition. Although it is not good that anyone should suffer this condition it is good that men are now posting up on this site in the Men's area.
pbxer

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Reply with quote  #13 
Hi Davidsmum,

Yes I should like to email you to chat about this. The fact you are a parent of a sufferer is very important to me. A problem that is looming large for me is that I don't know how much longer I can hide this from my parents and I hate myself for what I may put them through with it.

I also feel very sorry for you having to see your child have it. I almost feel like if I was alone in this world, things would be terrible but not as terrible because I could top myself or allow this thing to finish me off. But the only thing I have left is the love for my folks and my sister and just want to do the least damage to them.


Davidsmum

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Reply with quote  #14 
Hi Paul,

You can email to me by clicking on my name on the left box (above the date)  - it then shows that you can email and it should come to me through this board. I will get back to you.

I have a son in very early twenties.


PeterThornton

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Reply with quote  #15 

I am a 75 year old man who was diagnosed with IC some 4 years ago, my Eurologist has tried most things including Elmiron but all to no avail. However, after taking Elmiron for 6 months there was only very slight improvement and my specialist took me off them. Should I have continued with the Elmiron, as I have read that some folk do not find any relief until after 1 year. Kindly replhy


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This Forum is provided by Bladder Health UK and is intended as a place for Sufferers of Interstitial Cystitis, Bacterial Cystitis and Over Active Bladder, together with their family & friends to gather, online in a positive exchange.

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