P larkin: Hi I have been suffering from... - Pelvic Pain Suppo...

Pelvic Pain Support Network

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P larkin

Larky profile image
10 Replies

Hi I have been suffering from indistitial cycstitis for two years now , is there anyone

else with the same problem,I feel so isolated with this terrible pain and constant

burning in my bladder because no one I know has even heard of this condition.

My doctor has put me on anti depressants , but I haven't seen any specialists ,or

urologists ,

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Larky
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10 Replies
PPSN_JudyB profile image
PPSN_JudyBPelvic Pain Support Netwo

When you say anti-depressants , do you mean amitriptyline ? the latter used in low doses can help with persistent pain and is often prescribed. However if it doesn't help you should ask to be referred to a specialist. Where are you based ?

Larky profile image
Larky in reply toPPSN_JudyB

I am based in Liverpool,

endopains profile image
endopains

I do not have your condition but you poor woman!! That sounds hateful. Are you on a decent probiotic? I take probio every day. It has 3 million probiotics in it. Sounds silly but I was told by a gynae about it. I used to get cystitis, urine infection and thrush every week and everytime I took antibiotics. I never get them now and it's all down to the probiotics getting your balance right. If anything it will help if not give you some relief. My heart goes out to you and I hope you find your answer soon. Xxx

Larky profile image
Larky in reply toendopains

Hi endopains ,

Where can I get the probio , I am still waiting to see urologist, thanks for your help xx

endopains profile image
endopains in reply toLarky

Boots or Holland and Barrett :) xxx

Larky profile image
Larky in reply toendopains

Thank you xx

pauline19 profile image
pauline19

IC is usually 'complicated' by either Mast Cells (take pepsid or zantac+zyrtec as a starting point to see if you improve, keep a DIARY) and/or high oxaltes diet (kale, dairy, tea, etc again keep a specific diary!!). Stay on the amatriptaline if you can. Start using 100% cotton "lady things" ahem. I was shocked how THAT change helped! Eat the IC Diet, again keep a log. The Low Oxalates is a U.S. yahoo group. I'm in the states so that's where I started but just Google interstitial cystitis United States support and you'll find 2 awesome support forums. I learned all my coping skills from those ladies in DETAIL! RePost if you need us! This is a great group!

Larky profile image
Larky in reply topauline19

Thank you I am looking up on these furums now, and the oxaltas diet , xx

Larky profile image
Larky

The anti depressant is Mirtazapine I was on 15mg ,now I'm on 30 mg as from last week.

Last year I had six lots of anti biotics over a course 5months, then I had ultra scan,that

showed I had swollen right kidney,I had stent operation October last yr ,I have only

seen urologist in April this yr for checkup ,but when I told him about the burning , and pain in my bladder he didnt know what to say, it's been like this for two yrs now , until

Finally my GP said I will give you anti depressants for IC but I haven't been referred

to a specialist yet for this condition ,

jacquieb profile image
jacquiebVolunteer

Has your urine been checked to make sure there arnt any bacteria in your urine. Once that is ruled out, and you must get that checked thoroughly, not just the GP surgery then look into IC. I sadly, have IC, and the first thing I did was change my diet, and it helps I must say. keep off tea, coffee, most fruits other than melon and mango, chocolate.... drugs also affect IC, for me anyway, HRT ,certain antibiotics etc. After so many nerve block involving steroids has always affected my sensitivity. Read more about it, you can manage this pain/discomfort, of course nerve issues are something else!

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