Newly diagnosed with IC
Posted , 4 users are following.
Hi everyone,
I am new to this site as I have only recently been diagnosed with IC.
After a number of years of infrequent UTIs, some worse than others, I started to have bouts of acute abdominal pain, problems passing urine, frequency and discomfort when passing urine. I visited my GP thinking that I had another UTI only to discover that my urine sample was clear. The first bout occured about 15 months ago and lasted for about a month. My GP had no answers but sent me for an ultrasound on my kidneys and a vaginal camera both of which were clear.
As the problem had subsided by this time I did not prusue it but found that on occasion I would wake in the morning with very mild symptoms which would subside if I drank plenty of water. I did begin to notice that the symtoms were often most likely if I had been drinking alcohol the night before. All was okay until last Christmas when the problem kicked off again thus causing anther miserable month.
My GP referred me to the Urodynamics department. I am 53 and post menopausal so I guess it was assumed that the frequent need to urinate arose from my age. All tests were clear and I was told that there was nothing to treat but it was suggested that I could have an over sensitive bladder and cutting out alcohol, which I had already done, caffine, fizzy drinks and cytrus fruits and juices could help. Wanting to help myself I did as suggested and all was fine until the end of May when I contracted another UTI.
The UTI was treated and I wasat last referred to Urology. I have since had a miserable few months with constant bouts of the usual symptoms with no obvious UTI. The bouts and pain seem to be getting worse and as I no longer drink alcohol have no obvious triggers.
Last week I attended Urology twice, once for a kidney Ultrasound which was again clear and a flow rate test which proved to be poor and once for a cystoscopy. The forst consultant suggested that I had Urethral stenosis, the second and over sensitve bladder\ Interstial cystis,. I was prescribed Betmiga and told to go back in a couple of months. I had a miserable weekend, in much pain and was evntually given diazepam to calm me down and enable me to sleep.
I am improving but the Betmiga is causing insomnia so am not sure that I can continue. I have also bern given buscopam to relax the bladder. Trying to come to terms with it all and am genuinely worried about the impact that this is going to have on the rest of my life.
Has anyone any advice or ideas?
0 likes, 20 replies
j32310 Southside
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Southside j32310
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Thanks for your reply. At the moment I àm struggling to come to terms with everything that is going on and, apart from the support of friends and family, am feeling a bit isolated. One of the doctes I saw recently suggested using patient forums so I thought I would give one or two a go.
I have read your post and do see some similarities although my tests at the Urodymanics department and the vaginal cramera proved that I have no prolapse and that there is nothing wrong with my pelvic floor. Judging by your comments I suspect that you are a similar age to myself.
I have viewed a few forums so far and read a number of personal stories. Many bear many similarities both to one another and to my own story. Many suggestions regarding both possible treatments and life style changes have been made although I think that you are the first person to state that the taking of Lyrica has been a help.
j32310 Southside
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Southside j32310
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donna-marie1973 Southside
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lynne69494 donna-marie1973
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Most with ic will try different supplaments and diets to see what helps them. All advice helps
Southside donna-marie1973
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I have taken your advice and ordered s9me marshmellow tea from the internet. How often do you drink it. Just once a day or do you drink a number of cups. It is fairly expensive, unless it can be bought from elsewhere that I am not aware of, so would rather not replace all herbal tea with the marshmellow tea. Thanks for any advice you can give me.
donna-marie1973 Southside
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Southside donna-marie1973
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donna-marie1973 Southside
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Southside donna-marie1973
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donna-marie1973 Southside
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Southside donna-marie1973
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lynne69494 Southside
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Southside lynne69494
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lynne69494 Southside
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Annette who founded support group was very badly affected, and in fact resorted to urostomy, a last resort she went for, most dont and do get improvement with meds, diet. supplaments. For you its early and its finding right regime of meds, supplaments, and coming to terms with it, hopefully you will improve in a while, but no one can help what happens to their health, so hope you dont beat yourself up over it. Also helps if youve a good urologist, mine is very good, l,d a cystascope a few week ago, lst in 8yrs to check up, and l can talk and even write to him, he,s very understanding,and does write back and tells me to get in touch if it gets bad, more supportive than gp, many people dont really understand either, so hope you get support, Best wishes.