Pain down legs?

[princesscm99]

I was recently told by my ob/gyn that she thinks I have IC due to intense pelvic pain, urgency and frequency. Unfortunately, they do not have any heparin so they cannot do the PST and they never do a cystoscopy. I am uncomfortable starting treatment with her not knowing what I really have, especially since she didn't know what DMSO was when I asked her if they used it.

I have asked to go to a urologist, which she agreed with but said that my PCP would have to write a referral. My PCP is the doctor that not only told me nothing was wrong but she is also on vacation for two weeks.

My pain is becoming more intense regardless of what I eat or don't eat. Yesterday I had white bread and chamomile tea and the pain was ridiculous. It is now shooting down the inside of my thighs (it seems to change legs depending on which side is more intense) and into my calves. Is this a normal side effect of the pain?

I am debating whether or not just to go to the emergency room, but part of me also thinks I could just start instills with my obgyn (she wants to use elmiron in the instill instead of heparin) to see if they help. I haven't slept more than 20 minutes in a week and it's very much affecting my entire life. Any advice?

[ICNDonna]

I suggest you ask your GYN to send a recommendation for the referral to your PCP; that should resolve that issue and you can get a proper diagnosis and treatment. Heparin is not required for a Potassium Sensitivity Test. Have you looked at diet information in the Patient Handbook? That could be a good first step for you.

Donna

[SharonA]

Do take a look at the IC Diet. Many people here, including myself have been able to discover if foods/drinks add to their symptoms. I also have read here that some cannot drink the chamomile tea because it causes problems.

I hope you are able to get some help from a doctor soon so you will know why you are having all this pain.

You can find the link to the IC Diet at the top of this page.

(((Hugs)))

[leelee88]

Yes please look into seeing a URO and getting a proper Dx. But like the others said you can start the IC diet. For me the chamomile tea threw me into a massive flare. They do have over the counter medicine called uristat that you could try it works like Pyridium. But I strongly suggest seeing a URO so he can give you the meds that you need. Also drinking lots of water always helps me when I have eaten or drank something that did not agree with my bladder. Hope you get some answers soon.

[Briza]

Great advice from all, and like leelee said water is so very important for all of us...whether or not you've eaten an offending food it is very likely one of the most important things you can do for your bladder to keep symptoms under control by keeping the urine diluted...and I have found that with frequency and urgency, drinking regular doses of water, when I have frequency it is b/c I really do have to go, not just b/c I feel like I have to go.
I am ok w/ iced chammomile tea, but everyone of us has to realize that what bothers one person may not bother another, even if the food or bev is considered a usually OK IC food or bev.
I have not had the PST but have never heard that heparin is a required ingredient. Heparin is, from what I've read often here, an ingredient in rescue instillations and may play a role in coating and protecting an irrititated bladder lining and giving relief from symptoms, which I believe is the goal of instills. They are used for relief rather than the diagnostic role that PST tests are supposed to play in IC.
My gyn was the one who suspected I have IC, and while after performing a lap to rule out endo he referred me to a uro who began treating me w/ the protocol IC meds and not long after confirmed my dx based on my symptoms, cysto/hydro, and response to some of those IC meds; but after all that I returned to my gyn since we had a much better relationship and he has been rxing my IC meds ever since. Now, he doesn't do rescue instills, but when I asked him about them he was more than willing to learn about them, treat me in office, and then teach me how to do them at home.
But even the URO didn't push instills on me, not even DMSO, which I would have said a BIG NO to.... based on my own research I determined that this was not a treatment I would ever try. Rescue instills, maybe, but not DMSO.
Last summer I actually callled EVERY uro w/in a 100 mile radius of where I live ( about 30 uros) and asked if they peformed rescue instills and not ONE had ever heard of them, only DMSO. I personally would be happy to find a uro or gyn who had never heard of DMSO!
As far as the leg pain goes, that was actually one of my very first mysterious symptoms before I began having actual bladder symptoms...achey inner upper thighs and progressively very tired legs, starting at the top and working its way down. I've heard others complain often of this symptom on the board but have not heard of an actual serious reason for it. That symptom for me has gotten better as my treatment and doctors have gotten better.
Have heard that quite a few have had success w/ elmiron instills....whichever way you go I think the elmiron or the heparin/lidocaine instills would be the more progressive route to go, rather than DMSO, in my humble opinion, whatever that is worth, and the side effects less offensive.
The diet is a major part for many of us in terms of maintaining your level of symptoms, as important as your water intake. It can take some time along with the right treatments to realize how well it works for you, but believe me, it is well worth it and can make the difference in how serious your pain, burning, frequency, and other symptoms are.
Best wishes! Take care, Bri :)