Interstitial Cystitis Pain-Help!

RDavis72

I have interstitial cystitis (IC). I have been taking a combination of aloe vera, quercetin, and glucosamine. The doctor OK'd the glucosamine but not the others. Consequently my bladders screams at me most of the day and my pelvis feels like it's on fire. Does anyone else have any suggestions or ideas on how to deal with this? I don't want to be like this the entire pregnancy!

DiscusCoach

How awful! I am so sorry!

I don't have that issue but have had similar pain with endo. Is a minor surgery possible? Nerve blocking? Accupuncture? Herbal remedies to take the edge off?

Please let us know how it goes.

 

jennabee13

My mom has IC, and to treat the pain she eventually went to a pain clinic. She's got a really bad case, but maybe there's some sort of painkiller that's safe, like prescription strength Tylenol?

iris427

I'm sorry.  I have IC but a much milder case.  Did your doctor talk to you about any other options?  Have you talked to a urogynecologist about this, not just your regular OB?

I know that pyridium is safe in pregnancy, although I don't think you would want to be on it 24/7--but maybe you can take it during particularly bad flares.  

If you want to, you can PM me.  Like I said, I have a much milder case but I can relate to how much IC sucks.

RDavis72

Thanks for the advice. Tylenol doesn't really do much for me for pain relief because I took so much of it for another condition years ago. The aloe vera/quercetin/glucosamine combination had been giving me mostly pain free days.

I haven't been to a urogynecologist. I too have a pretty mild case but I can feel my bladder all the time now and I have this burning itchy sensation in my pelvis and down my thighs. Sometimes it's worse than others. I can't afford accupuncture right now or I would try that. I will ask the dr. about pyridium. It's worth a shot.

Sometimes I can't tell if it's bladder pain or if I'm cramping. So I can't tell if it's something that I should be worried about in the pregnancy or just my bladder. It freaks me out since I'm pretty much worried about losing the baby all the time these days anyway.

iris427

I think you should try to get in with a urogynecologist soon.  9 months is a long time to be miserable and the bigger your baby gets, the more pressure it will put on your bladder.

Try not to let it worry you though.  IC will not hurt your baby in any way, and cramping can be totally normal in pregnancy.  GL, I know the first tri is stressful enough without chronic pain.  I hope you find some relief.

The aloe vera etc--are those like pills you are taking?  Where did you  get them?  I haven't found anything good for my IC pain yet.

RDavis72

I searched out many alternatives to Elmiron. If you haven't found www.ic-network.com I do recommend it. I was recommended by a fellow IC sufferer to use Desert Harvest Aloe. Also try www.icaloe.com They both work great but can be a little pricey when you take 4-6 pills a day. I found that the Vitamin Shoppe has a much cheaper alternative. You have to take a few more pills to get the same effect since they aren't as strong. Just make sure it's the whole leaf dried aloe and not the one with latex. She also recommends Cystoprotek in combination with it. CystaQ is another good one to try. They will give you a free bottle if you go to the website. One of the main ingredients in both CystaQ and CystaProtek is Quercetin. CystaProtek uses a combo of the Quercetin with glucosamine/chondroitin. To save a little cash, I found the supplements were cheaper to buy them seperately rather than buying the CystQ and CystoProtek. The other supplements I get from vitacost.com

My daily regimen has been 2820 mg aloe vera (6pills), 1000mg of quercetin w/bromelain (4pills), 1000mg of glucosmine/chondroitin (2pills). This "cocktail" allowed me to be pain free most days and eat anything I wanted. I recommend trying at least the Aloe Vera if nothing else. I was told it acts as a pseudo GAG layer in your bladder which coats the bladder. Quercetin is great if you have allergies and it works for the bladder inflammation. The glucosamine is good for joints and it helps to rebuild the GAG layer of your bladder. All in all it has worked for me. Good luck of you decide to try it. I would be interested to see if any of these work for you!

I am scared to use the aloe and quercetin even though they are natural while I'm pregnant. I guess I'll have to suffer through it for at least the first trimester.  Thanks for being there for me!