Constant Burning...

[SJCdmb]

Hi Everyone! I am so happy to have found this message board and hope someone on here has experienced the same symptoms I have been having for 7 Months now. I am seeing a specialist, Dr. Fred Howard. You can find info about him because he is the best of the best here in Rochester, NY. Anyway, my symptoms are this deep burning pain and frequency. It sometimes gets worse when I sit. I go to the bathroom at least 7 or 8 times a day. I also have a lot of buring under my toes. My doc said it could be because the nerves from the bladder area are connected to your legs and toes. Anyway, I had the Potassium Chloride sensitivity test and it only really bothered me after I tried to void out the solution. After that, I was diagnosed with IC. Since then I have had 1 DMSO installation and have started to take Elmiron. The first installation hurt my urethra so badly despite the fact that they use a baby-sized catheter. Now I don't feel a hint better but my doc said to give it time because the Elmiron can take up to 30 days to show any improvement. I could go on and on, but just wondered if anyone else's main symptom is a deep burning feeling inside. It doesn't feel like it's anywhere I can reach. I appreciate all who were willing to read this long message! Thanks!!

[twiggy]

I get burning frequently, on and off. In Dec., I am going to be checked for endometriosis too. But, I have burning every day. Never in my toes, but I have had it in my groin and thigh. There are other IC'rs who can tell you all about their burning and probably will. Apparently, it happens with IC but I am too new to be considered an expert!

[Myli]

:welcome: Glad you found us!!

Yes, I've had the burning sensation, though through treatment and learning to head off flares, I have it infrequently now. Sometimes burning is related to foods, the IC diet http://www.ic-network.com/handbook/diet.html can help. I think the burning is just about the worst pain associated with IC. Hopefully, your doc will help you find the treatment that reduces that pain for you.

You will also find a lot of information in the handbook in other chapters, as well as, on these boards which deal with almost every aspect of treatment and the impact IC has on life.

I can't say enough about this community. Everyone cares and wants to help. Feel free to ask any question or rant as needed. Someone is bound to have encountered the same or a similar problem and will be happy to offer advice or just lend an understanding ear.

:grouphug:
Myli

[ICNDonna]

Elmiron can take up to six months or longer to be effective so don't give up on it too soon. I totally agree that your burning could be diet related. I suggest you give the IC diet a try to see if it helps.

Warm hugs,
Donna

[DetroitMel]

For me, and I know this sounds weird, the burning is a good sign! When I get my flares they are mostly a constant sharp urethra pain (like stabbing pain), not burning. But after the 3rd or 4th day of the flare, as it starts to taper off, that deep burning sets in. It is super annoying in that you're right, you can't really reach it to do anything about it. Mine usually lasts a few days, but it's how I know my flare is coming to an end. Very strange, I know, but what about IC isn't strange? :hmm:

[Dani72]

Sometimes for me, I can get relief from the burning with the over the counter Pyridium. It's called Azo standard. It turns your pee orange. You can buy in any drug store. Sometimes it doesn't work, but sometimes it does. You might want to give it a try. Good Luck.
Danielle

[Iris]

Hi, I used to get the burning pain continuously, before I was diagnosed, and then started on the right meds. That for me was the worse part of my IC, and was so unrelenting, even with different pain meds at the time. At the time of my cysto/hydro, my urethra was dilated, do not know if that helped my situation at all, but so far on my meds, only get a slight burning at flare ups. Hope that you can get some help for yours, please keep us posted as to how you are doing. Hugs Iris. :grouphug: :flower:

[KristaM]

Hi there,
Welcome to the boards.. I am a constant burner and have just been diagnosed fairly recently. I have quit all caffenine products and am trying to follow the diet as best I can so no citrus fruits or tomatoes. I find that pyridium works really well and the best thing so far for burning is drinking lots of water. You have to be constantly drinking it throughout the day in order for it to work.. i'll let you know if I come up with something else.
Krista

[classics]

Oh, yes! Burning is my main symptom. It's so bad today that I'm waiting for a call back from my urologist.

I've been on Elmiron for 4 months. I want to keep taking it but want to add other medications. Seems since the leaves starting falling I'm worse and that my general allergies are bad, so I'm thinking this IC is probably related to allergies. I've been on the IC diet for months, and taking Prelief, too, but I still keep burning.

I made some icecube balloons and put them in the freezer. If you put one in vaginally, it's really cold, but once it's in far enough, you don't feel it anymore. You need to be sitting or laying down though, else the balloon will slide right out. Really helps when I'm desperate.

[SJCdmb]

Thank you all for responding...I finally feel like I am not alone..I really appreciate all of your suggestions, I am definitely going to try them!

-Sara

[Dixiefireball]

:hi: and :welcome: to the ICN family like the other has said it can take up to six mth to a year for elimron to work but most uro's give either a cocktail treatment or dmso to help kick in the elimron I hope it helps you soon'
sending you hugs and prayers
Rhonda

[Cricketmk3]

I had constant burning for months and months. DMSO would help temporarily and then it would come back. I used to have a DMSO treatment about every month. I was taking Elmiron all this time. Then after a year, I started taking Paxil. I have been virtually pain-free since. I don't know if the Elmiron kicked in or the Paxil worked but I will continue to take them both since I don't want to ruin a good thing. By the way, I also follow the IC diet. Mainly avoiding MSG, alcohol, and soda.