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interstitial cystitis + catheter?

By June 13, 2010 - 12:48pm
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Hi - I am currently 30 weeks pregnant + have had IC for over 15 years. My pregnancy is making my IC so unbearable that I am unable to leave the house even to walk round the supermarket. I am off sick from work as I cannot make the 20 minute journey. I am now a recluse. Would an indwelling catheter help me? I am seeing the urologist on Tuesday + am praying that he can help me as I am at the end of my tether.

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July 26, 2011 - 8:42am

i am so sorry girl. I was in so much agony I thought of bladder removal also but I stuck it out and elavil worked for me. It is a horrible disease

July 11, 2010 - 10:18am
(reply to sunmayden518)

Can you tell us more about your previous symptoms, how long you had them, etc?

How long have you been taking this treatment, and what type of symptoms relief has it provided to you?

We would love to hear more about your story, especially since something actually worked!

July 11, 2010 - 11:35am
EmpowHER Guest
Anonymous (reply to Alison Beaver)

Hi, previous symptoms beforre getting pregnant were frequency, urgency + pain. Also the mental effects were awful - lack of understanding + isolation. Whenever I had a flare up it used to come over all of a sudden + it would make me so anxious - it was just dreadful. I was at one hospital that I was not happy with then I transferred all my care to another one - not sure if I can mention the name but it is specifically for women + it is in my home city - I live in Liverpool!!! The urology team there are second to none - absolutely fantastic + my nurse specialises in IC, in fact IC is her baby!!! I will be going back on to Elmiron which aren't licensed in the UK so I have to get them on a nmaed patient basis from USA. They take a few months to work but they basically help build up the bladder lining. They didn't cure me but they did help a great deal. I began having Cystistat bladder instillations last year - I was having them weekly at first then went to monthly treatments. The nurse used to insert the solution into my bladder via a catheter + I had to turn around - a bit liki a chicken on a skewer!!! to make sure it covered my bladder. I found it very soothing. I had to hold it for at least 30 mins + it helped coat the bladder lining. I feel that having a good uro team is half the battle - I cannot praise them enough. For years I was pushed from pillar to post by different hospitals + given all sorts of meds + the doctors there didn't know what was wrong + I felt brushed aside. I still have to watch what I eat - I can only drink water + have had to cut out citrus fruits/ spicy food + a few other bits but that is a small sacrifice to pay!
I am feeling quite positive today as 5 weeks today Iwill be having my baby!!! Excited but nervous!!! :) xxxx

July 12, 2010 - 2:01am
EmpowHER Guest
Anonymous (reply to Anonymous)

Just an update - our beautiful son was born on 14th August + I feel absolutely great (apart from sleep deprivation!!!) Thank you so much for all of your support xxxx

October 21, 2010 - 3:16pm
HERWriter Guide (reply to Anonymous)

CONGRATS on the birth of your son, and we're glad that you're feeling great. We just love happy endings!! Stay in touch, please. We're here to help you. Pat

October 21, 2010 - 5:56pm
EmpowHER Guest

Hi, yes I will go back onto my bladder instillations + Elmiron medication once the baby is here + I also have an appointment with the consultant in November to discuss bladder removal. I am actually being induced in 5 weeks as the obgyn agreed that it was unbearable for me so they said they could start me off 2 weeks before my due date :) So happy about that xxxx

July 11, 2010 - 9:43am

I got diagnosed with IC in 1994 and it destroyed my life. I was bedridden for 8 years. I finally got help from taking elavil and have been pain free for 8 years. I cant imagine what you are going through with a pregnancy since no meds can be taken then. Can you begin to try taking meds after the pregnancy? I know there is no cure for IC but you may be able to control the pain.

July 11, 2010 - 6:24am

Hi Louise,
I am so sorry to hear your plight, my thoughts are with you and i can sympathise completely as a sufferer myself. Unfortunately pregnancy can either put a condition into a remission like state or do the opposite and exacerbate the condition, so your next pregnancy may not be as bad. My daughter has crohns disease and in her first pregnancy she went into remission but this time not so, try and keep the people who love you most close by and don/t be afraid to lean on them you need to.

June 15, 2010 - 4:07am
EmpowHER Guest
Anonymous (reply to clonte)

Thank you for your kind words. I'm home now after a wasted journey. The consultant said his hands were tied as there is nothing that can be done for me. I asked about a catheter but he refused saying it could cause an infection. I told him that I can barely walk and cannot carry no like this and that it would be inhumane to leave me like this. He said that if he was being inhumane he would be withholding information from me which he's not doing. I have cried nonstop and am at a loss as to where to turn to next. I just don't know what to do. I don't know how I am going to cope for the next 10weeks till my baby is here. Nobody understands and all I get is 'oh it's only a couple of months' I can't stand another couple of hours like this. I'm fearing for my mental health seriously. It looks like I will remain a recluse until my baby is here. Sorry for the rant, I really do appreciate your kind words xxxx

June 15, 2010 - 10:04am
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