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Dx June-ish 2010 looking for some advice

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  • Dx June-ish 2010 looking for some advice

    Hi All,

    Here is my story (scroll to end to where I'm looking for advice). I've probably had IC for a while, but not bad enough to have it interrupt my life consistently to figure out a pattern (after dx'ed I remembered a HORRIBLE back ache that were absolutely incapacitating right before I graduated from college - but there was no apparent cause). That is, until I went on birth control. I went on progesterone only during the summer of 2010, and then woke up one morning after binging on chicken wings (so delicious) and couldn't urinate. My tummy was swollen and painful. I'm small, so it was easy to see a swollen tummy.

    Long story short, I was negative for a UTI, and saw a specialist in IC - a urologist that is currently researching IC - and was dxed. At first I was really speculative about the dx since all he did was a pelvic exam. But then I came to this site and starting reading the stories. I also had some more bouts of excurciating back aches with a swollen lower tummy, and eventually my tummy started hurting with my back. After missing 3 days of work and being in so much pain, I decided to give the dx consideration.

    I went on a pretty strict diet, eliminating nearly all of my favorite foods, and my stomach was so flat! I had assumed all those years that I just naturally distributed a little bit of fat over my lower abs. I could have a slight 6 pack if it wasn't for this little pooch - but I soon discovered with the diet that it was not fat - but inflammation and bloating. Plus, the most important part, the pain was mostly gone. Then I believed that I had IC. I stopped the birth control pills in august after reading that hormones might cause problems with IC, hoping it would go away. Unfortunately it hasn't.

    I slowly started to add some things back into my diet and tried pre-relief. The pre relief does help if I take a lot of it. I thought my urologist was way too pushy regarding all the prescription meds he wanted me to try... and since I had some success with diet, I have avoided all that. I did try the bladder cocktail, but it didn't help (it was only one time). He wanted me to try two oral pills also, but I didn't fill the prescriptions for those. At this time, I am still unwilling to try those meds for other medical reasons. If the bladder cocktails weren't 50 bucks per week, I'd try those, but thats just way too spendy for me.

    With mostly being good with food and the pre-relief, I am managing, though still experience some annoying flare ups (wouldn't call them disabling) that can sometimes last for a few days or even >week. I can usually take care of the flare ups with benadryl, but this leaves me really hung over in the morning, and I can't handle taking benadrl more than a few days in a row because it messes with my sleep too much and I can't function. I wanted to try drinking water with baking soda, but I am on a low salt diet because of something going on with my ears. If I eat too much salt, I could permenantly damage my hearing, so I can't do that...

    So here is where I need advice. Eventually, I'd like to start a family, which means prenatal vitamins. Has anyone found any interventions that help you with taking vitamins? I'm also really worried that the increased progesterone and estrogen during pregnancy will make my IC worse. Has anyone been pregnant with IC? What happened and how did you cope?

    Plus side: after talking to my mom, I realized she has ic too. She has learned what she can and cannot eat by trial and error with no dx or doctor involved. She never even knew it had a name. She said she "grew out of it." It was really bad in her 20s (that's where I'm at right now), but eventually she could eat fruit and tomatoes again without making her urinate blood or be in pain. So I am hopeful!

    Other problems I have (I currently do not take any script meds regularly):
    endometriosis, IBS, migraines

    Things that help me
    lots and lots of pre relief with trigger foods
    drinking lots of water during flares

    strict diet made me even healthier than I was before IC got really bad... but I just love food too much ... so that's where the pre relief comes in. I do avoid my worst triggers though.

    Thanks for reading!