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.
Thanks,
Louise
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Hi Louise,
I am so sorry you are going through this, but congratulations on your pregnancy. I know it feels like forever (I just delivered 11 weeks ago, and my pregnancy was difficult...but yours sounds unbearable), but you are getting near the end of your pregnancy. Many women are required to go on bedrest at the end of their pregnancy, and if you are feeling like a "recluse" as you said, we could help provide information on how women make it through another 10 weeks (or less) of being on bedrest while pregnant. I'm not sure what your work/job situation is, or how your health insurance is going...are those added stressors?
As far as our suggestions or information on if a catheter would help your IC while pregnant, I'm so sorry to say that only your doctor will be able to tell you what is best for your specific condition while you are pregnant. Since you are going to the doctor's office on Tuesday, can you write back to us and let us know what was recommended, and we can help you search for information that your doctor recommends, if you are confused by any terms, or would just like more information on treatment options (once approved/suggested by your doctor).
Please hang in there. Do you have a good support system helping you? How old are you? Do you have any other small children that you are also caring for?
June 13, 2010 - 9:32pmThis Comment
Thanks for the reply Alison, I will certainly let you know how I get on tomorrow. After another night of no sleep I don't know what i will do tomorrow if the consultant can't help me.
June 14, 2010 - 12:40amMy parent + fiance understand as does my best friend but I don't think anyone realises how bad i feel. I don't have any other children + this pregnancy has 110% put me off getting pregnant again. I know I am luck to be bringing in a child to the world but I am finding the whole experience unbearable.
Thanks again + I will write tomorrow woth an update x
Hi Louise,
June 15, 2010 - 4:07amI 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.
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 - 10:04amAnon,
Wow. That was devastating news to hear. I'm so sorry. I hear you when you say you are afraid for your mental health. Are you afraid you may try to harm yourself? If so, please call 1-800-273-8255. That is the National Suicide Hotline, and they can absolutely sympathize with someone like you who is in a painful situation that you can't control.
Do you know about the IC network support boards? Perhaps other women who have been exactly where you are will at least give you a little comfort, knowing that you are not alone. Here is a link:
http://www.ic-network.com/forum/
and here is a link to the sub-forum of Pregnancy and Motherhood with IC:
http://www.ic-network.com/forum/forumdisplay.php?s=ae85eac1aaaf55f7830ba...
And here is a link to the IC network directory of physicians state by state. I guess I'm hoping that there might be a specialist where you are who has more expertise in this area and might offer some help:
http://www.ic-network.com/md/
Will you keep writing to us? We want to be here to support you through such a tough time.
June 15, 2010 - 10:22amhi, thanks for your reply. I am just living for the day my baby arrives! Then I can go back no my treatment. I am very lucky in the fact that I have a wonderful fiance who is so supportive. I am a member of the ic group you mentioned and also the UK one which is where I'm from. I really hope I start to feel better once my baby arrives xxxx I will keep in touch xxxx
June 15, 2010 - 10:55amYou sound like you are doing a little better, since you are now writing that you can make it until your baby arrives with your symptoms.
Can you describe the symptoms that you are having, as everyone does experience IC differently. Why do you think a catheter would be your solution?
If you get to the point of your symptoms being unbearable again, have you thought about seeking the help of another doctor for a second opinion? Or, are you interested in any homeopathic providers?
June 15, 2010 - 1:58pmHI Alison, my symptoms - are you ready.........
June 15, 2010 - 2:41pm-constantly having the urge to urinate with no relief even after going
-terrible pressure on my bladder which makes it difficult for me to walk + impossible to stand up straight
-frequency + urgency- I have to go every 5 minutes - 10minutes max day + night
-back ache
I am in that much pain that the very thought of even standing up from my chair almost brings me tears!
I am thinking about the catheter as I have been on other forums + saw that it takes away the feeling of wanting to go all the time. The consultant said himself that it would take away the feeling but not the pain. That would be fine - I am finding it difficult to cope with both.
I am constantly exhausted + just finding it really difficult - I long just to walk around the supermarket!
I am still feeling really down but haven't got much choice other than to get on with things. I am very lucky to have a great fiance though - I count my blessings that I have got him!
To be honest, I am losing faith in doctors as they just don't seem to know much about IC + usually send me away telling me to retrain my bladder or to drink cranberry juice!
Thank you for your continued support - I will continue to write on here with updates, youhave been very kind xx
That does sound unbearable, I am so sorry! The thought of all of this PLUS a third-trimester pregnancy. ugh. Pregnancy is difficult enough on the bladder without IC. IC is difficult enough without pregnancy.
It sounds like you did find your answer to your original question, however. A catheter would help with taking away the urgency/frequency symptoms, but would not take away the pain and there is a chance of infection. It sounds like this Urologist (who you refer to as a consultant, right?) considers the possible "pros" do not outweigh the possible "cons".
You still have a few options:
June 15, 2010 - 5:24pm1. Seek a second opinion through another Urologist who will help you with a catheter on a trial basis
2. Find a Naturopathic doctor who may have other suggestions to help alleviate some symptoms (Diane gave you some great resources)
3. Continue having your wonderful fiance help you day-to-day, as well as talk with us anytime you need to vent about IC and/or pregnancy, and all of this support can hopefully get you and the baby through the next 8-10 weeks (I assume after you deliver the baby, you can begin your previous IC treatments that were working??)
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