gailywaily
Registered: 24/09/06
Posts: 16
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Posted 15/08/12
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#1
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Hello People
I am after some advice. I have had pelvis pain for 12 years. Six years ago i had a cystoscopy but it showed nothing as the urethra was not examined and no biopsy was taken. However, I was left in agony.
In March this year I plucked up the courage to have another one done at a different hospital and requested a biopsy be taken. This revealed chronic inflammation of the urethra. I returned to the specialist and he said first course of action was to take long-term antibiotics (Norfloxacin) for 3 months in case there is an infection which does not show up in urine tests. I am over 2 months on the tablets and they have had no effect whatsoever. I spoke to my GP today and he said to finish the course and that if they didn't work (which i can't imagine they will now) that the only treatment available would be to continue with the painkillers I eat (Gabapentin). He did also mention a BCG type injection into the bladder, but told me to ask my specialist about it
So i am wondering does anyone please have any experience or preferably hope they can share with me. Are there other treatments for chronic urethritis; even if i am prepared to pay?
I am ever increasingly despondent that the condition/pain is here to stay and that I will never have a chance of having a normal sex life or life for that matter...
Thanks!
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Icy
Registered: 01/03/12
Posts: 204
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Posted 16/08/12
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#2
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Hi Gaily,
Although I have not had anything like a BCG injection into the bladder, my feeling personally are that I really would avoid anything invasive and questionable like this. These things are not proven and how can one know that BCG virus and bacterias will not add to the already chronic inflamation. Something is causing the chronic inflamation in the first place and it is important to try and get to the bottom of the chronic inflamation.
Have you been checked for rheumatoid factor (rheumatoid arthritis can affect the bladder), other things like food allergies and intollerences, candida. Sadly the knowledge of IC is appalling within the medical profession and they automatically give out antibiotics which just compound the problem by destroying the protective mucous linings of the bladder and killing of good flora.
Have you tried diet and cutting out sugars, yeasts, carbs and gluten. Gluten is responsible for an enormous amount of gut and damage to other organs in the body. Coeliac and gluten sensitivity is most definitely not confined to the digestive system only as so many specialists have been taught. It may be worth reading the book by James Braley called "Dangerous Grains" which gives a much wider view on gluten sensitivity and explains how the body can be damaged with gluten, including the urogenital system. Also the Better Bladder Book by Wendy Cohen talk a lot of the gluten connection with bladder problems. There is also a lot of information on the internet about how antibiotics can be one reason for the increase in gluten sensitivity - if you have had lots of antibiotics this will have compromised the mucosal system in the digestive tract and therefore gluten will be extremely difficult to digest due to the intestinal permeability that comes on from antibiotics. Many of these things can contribute to inflammation.
I would try as many things as you can before even considering more antibitoics and invasive procedures with something quite toxic.
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gailywaily
Registered: 24/09/06
Posts: 16
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Posted 16/08/12
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#3
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Hi Icy. Thanks for your reply. It makes a lot of sense and timely as I began working with a kinesiologist in March and she diagnosed candida. I followed her advice which involved a mega strict diet (no gluten, yeast, sugar etc) and am now candida-free. I didn't notice any improvement in bladder pain but was only on it for 3 months. I am defo not coeliac as i have also had biopsy of my stomach and all my villi are normal. Whatever they are. I do however have unexplained gastritis which i am also on meds for. My kinesiologist was also unsure about the antibiotics because as you point out they can create health havoc and i have already been on them before long term for my skin. But i was desperado and wanted to rule out what NHS were telling me. Obviously i hoped they would work.
I also have chronic fatigue syndrome and can't help feeling all these problems are to do with trauma and my body's reaction to chronic stress. I have had quite a lot in my time. Still i am open to doing gluten free for a while and hold off invasive treatment. Sorry for rambling. There's nowhere else to do it!!!
Gail
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Nic_R
Registered: 17/02/12
Posts: 8
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Posted 20/08/12
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#4
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Hi Gail,
I also suffer from unexplained gastritis and am sure there is a connection between that and my bladder pain (it all started at around about the same time). I have taken a lot of anti biotics in the past and think they may have played a part in the gastritis.
Over the last year I have cut out most gluten, yeast, sugar etc. and I do think it's had a positive impact on my health. (even though I tested negative for coeliac)
I've been taking high strength probiotics for about 6 months and think they have definitely helped my stomach problems. I have now managed to come off the PPI meds I was on.
The conclusion that I have slowly started to come to is that diet, and more natural approaches might be the way forward...
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gailywaily
Registered: 24/09/06
Posts: 16
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Posted 22/08/12
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#5
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Hi Nia
Thanks for your reply. Yes i do also think alternative is the best way and work closely with a kinesiologist to figure out the best remedies. I also have had good results from changing my diet as i have a multitude of other health problems but no luck with the urethra yet unfortunately
Gail
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saxon
Registered: 15/10/07
Posts: 119
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Posted 10/10/12
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#6
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at last someone else with chronic urethritis, i am no longer alone!
hell dont describe it well enough does it.
my cystoscopy caused chronic pain and exaccerbated what i think was already (undiagnosed) urethritis in 2007.
its taken the ic diet, amytriptaline, and weaning off codeine which for me flares me and onto paracetamol to get a glimmer of hope. until i totally destressed my life, stopped fasting between meals (this irritates urethra) quit sugars, juices, fruit except odd banana i was suicidal with pain. i am a wuss!
finally when all was in balance i got back a sex life i never thought my vulva could be touched again. but i read a book called headache in the pelvis by dr.wise he talked about ic and pelvic pain etc and how tension in this area decreases the bloodflow and that was what was happening to me. my bladder and bowel nurse confirmed that my anal spincter was rock solid through so much clenching of muscles to protect and guard my poor swollen urethra. i have had to unlearn this behaviour.
i am prone to candida at the drop of a hat, anything that ferments in my bowel and its off! i have to chew my food well and i gave up long term antibiotics in 2008 as they were making my urethritis worse.
who knows maybe there is something in my experience that will help? ttfn
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