Thread: New here and feeling so alone...
03-29-2012, 02:02 PM #1
New here and feeling so alone...
Hi. This is my first time posting on this site. I've seen and read many articles on IC here but still feel so alone. I was told by my urologist a few weeks ago that I have what he thinks is the preliminary stages/symptoms of IC. One major difference is that I'm currently 26 weeks pregnant (I'm 28 years old.) For months I've been experiencing all kinds of IC symptoms (burning feeling in the urethra area that doesn't go away/gets worse when I urinate, urgency, frequency, and lower abdominal pain) and diet/drinking more water doesn't work. Problem is, my urologist says he can't offer treatment for me because of the pregnancy. I've so far gone through 2 ER visits with severe urinary retention (having to have a catheter--extremely painful!), a urologist (referred by my OB) who performed 2 urethral dilations in one month, and a perinatologist who was only able to prescribe me a very small dose of an anti-inflammatory drug which helped wonders (don't know why) but can't be taken long term because they can kill the fetus. So far, no one can help me with the pain--it's been since December, 3 months. I've been on a series of narcotics for pain, and tylenol--which doesn't work.
I feel so alone because it seems like nothing can be done when you're pregnant. I'm worried because I haven't been able to take my prenatal vitamins because they cause me so much pain (I burn really bad after I pee when I take them). I've also limited my diet drastically and am afraid I'm not getting the nutrients my baby needs. I've read the pregnancy section on this site but didn't find any similarities with my story, especially now that I'm going to have to undergo a C-section only because my doctor is afraid my retention symptoms and flare-ups will increase if I have a vaginal birth. I've honestly had symptoms of IC since I was very young (I remember being constantly given antibiotics and peridium only for it to not work). Anyone experience this before? Any advice would be greatly appreciated. I feel so so alone and feel like just giving up! No one I know who's been pregnant can relate to me, they just shrug it off thinking it will go away eventually, but it hasn't and the pain has become unbearable now. Please help! Thank you! P.S. Sorry this is so long.
04-01-2012, 09:00 PM #2
- Join Date
- Sep 2011
I just saw your post and wanted to give you some support! I don't know if you have seen the IC Diet list? You mentioned you have restricted your diet a lot. The IC list has a lot of high nutrient foods that are usually ok, particularly vegetables. If you don't like veggies much, try mixing them into stuff you do like. For example, I mix broccoli (steamed) into my mac & cheese!
The things I have done to decrease the pain and burning are the heating pad, hot baths, the stuff that makes your urine basic (Prelief?). I have actually stayed in the bathtub for 2 hrs or more, just to decrease the pain from the spasms of my bladder. I think it is the water pressure and the heat that help. My doctor also has me take antihistamines to help calm my bladder. Ask your doctor about which antihistamines are ok while pregnant.
I hope you get some relief soon! One thing I forgot to mention, your baby will be fine. When pregnant the baby gets everything, in terms of nutrients. It's the Mommy that can have low levels of nutrients while pregnant. Basically everything goes to the baby's development and growth first.
04-03-2012, 03:25 PM #3
Hi there and welcome!
I am sorry you are going through this. I cannot imagine how frustrated you must feel, but it seems like you are on your way to a diagnosis. Honestly, I am not too familiar with pregnancy with IC, but I would definitely suggest checking out the IC diet because it is one way to begin treatment, and it does not require a prescription or even a diagnosis (http://www.ic-network.com/diet/). And if you have not already, take a look at the, "newbie kit," (http://www.ic-network.com/forum/showthread.php?t=27629). Some of it may already be old news to you. And also talk to some of the people in the, "I'm Pregnant!" section (http://www.ic-network.com/forum/forumdisplay.php?f=60) because they will mostly be able to suggest some ideas for pregnancy-safe treatment. I am hope that helps a little bit, and you get some relief soon. Hang in there, and try to remain stress-free for your bladder and your baby! Best wishes!
(P.S. You are new, and you have no idea what long is! Haha. )Tierney ♥
Message me and add me http://facebook.com/tierneybrielle
Diagnosed with IC at 12-years-old, but have had IC much longer, now 21-years-old - fibromyalgia (diasnosed 07/30/12) - diagnosed with myofascial pelvic pain syndrome in January of '12 - scoliosis since 12-years-old and spinal fusion (06/21/10) T10-L3 with metal implants and some nerve damage - chemical sensitivity - allergies - IBS tendencies - menorrhagia and dysmenorrhea (both controlled) - chronic nose bleeds - heartburn - rosacea - and that is just the relevant stuff
Do you have a question? Feel free to ask me anything; I am an open book!
I am not a medical authority; I do not offer medical advice. Talk to your doctor, and if you are not comfortable talking to your doctor, find another one. It is OK to advocate for yourself as well as not be satisfied with your doctor! You deserve the best medical care.
04-03-2012, 04:53 PM #4
hi mommytobe2012.i just wanted to say i am here to support you.i could not imagine having ic with pregnancy.being pregnant is hard enough without extra health issues.do lots of research on the net and talk to as many doctors and specialists as you can.use the support system here on this site.hopefully someone in your situation will be able to help you.sorry i can't give you much good advice.i am here for you.take care and good luck.
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