Is anyone like me?

[mandy2888]

Hello my name is Mandy- new here and thankful to be reading about all of your stories. My prayers that all of you are finding some symptom relief this evening.
I wanted to share my story really quickly and see if i can find some similar situations.
My family practice doctor suggested that i have IC after having awful pelvic pain for the last year. Recently I began to have UTI symptoms when my labs weren't really reflecting an infection. My doctor has put me on Elmiron and i am to call in tomorrow (after 2 weeks) to tell if it's helped me. I don't really know that anything has changed yet. I don't seem to have the urgency issues much. I did have some of that right after my baby, but after i went on Effexor for anxiety/depression it did go away. My biggest problem right now is just the pelvic pain. It feels like my front pelvis is grinding together and burns/aches. It will stop for awhile if i rest, but any activity puts the pain right back in there. Also sitting for long periods of time does too. Tylenol doesn't seem to touch the pain at all. I have not had a scope to verify a diagnosis and am not sure if that would be helpful? I do have some pain with intercourse (from what i remember :) ) Food doesn't seem to make a difference when i journal i cant find corresponding foods to pain. I do notice my period brings on the worst pain.
I guess i have just read a lot about urgency and being up all night with peeing, but i haven't read a primary symptom of pelvic pain much. I don't know if i fit in since i don't have the urgency.

ANy hoot thank you so much for plowing through this long story. Let me know if you have any opinions on me or what i should do.
Nighty noodles.
-Mandy

[Lori1975]

Greetings Mandy. I too am new to this website but I have been diagnosed with moderate I.C. since May of 2008. I would see a urologist/gynecologist. Those I found to be the best qualified. I went to the Women's Center which was located within the hospital. I needed a referral from my PCP to see a specialist who has knowledge of bladder and pelvic pain. You can look up doctors on the internet or you can also ask your PCP if they could recommend anyone...or if you have insurance and need a list of their doctors you would call them and they can give you a list of specialists to call and of course you will still need a referral from your primary care physician (PCP). Once I did that, I needed to set up an cytoscopy with hydrodistention. The day surgery they put you out for and you are sore as hell when you wake up but at least you are then diagnosed and you can get the medication and treatment you need. The proceedure is where they fill your bladder stretching the skin while taking a picture to check for cracks in the bladder lining. This is what determines if you have Interstitial Cystitis. I would also keep a diary of how much you are urinating and how many times in a 24 hour period you urinate. I have found Elmiron to be useless taking it orally. It has a poor absorption rate...especially if you have acid reflux or an acid stomach. By the time it reaches your bladder you hardly get any. However I found it extremely helpful when injected directly into my bladder with a catheter. In my experience western medication masks the problem...like elmiron it just coats the bladder temporarily...but doesn't repair the lining. I have found herbal remedies..such as herbal teas to be the best so far. It is more of a gentle way of adding herbs to help repair the symptoms you have. However you already have an overactive sensitive bladder so you have to be careful and present these into your body slowly and make sure it doesn't conflict with any synthetic drugs you are currently taking. Hope this helps.

Lori

[wagamama]

I guess what you are asking is if you only have pain and not frequency, can you have IC? I have mostly pain, but if I stop taking my meds I occasionally have frequency issues. Nothing near what others report, though. And sitting all day bothers me too.

Many people have a combination of problems that cause their symptoms, like perhaps pelvic floor dysfunction and IC. Did your doctor rule out pelvic floor dysfunction or pelvic floor muscle spasms? Those can also cause the symptoms you are describing.

Before my urologist diagnosed me with IC, he did a cystoscopy in his office and also a urodynamics test to confirm there was inflammation in my bladder and rule out other conditions that are similar (like pelvic floor dysfunction). A lot of people have similar procedures before they receive a diagnosis, again because many different conditions can cause pelvic pain.

PS: Elmiron can take up to six months to start working (although many people see a benefit before then). You might be able to tell if you have side effects in two weeks, but it might take much longer before you see any change in your symptoms.

[ICNDonna]

:welcome: to the IC Network.

First of all, elmiron can take six months or more to become effective --- so two weeks is not a very good trial. I hope your doctor will be able to offer other meds that act more quickly to go along with the elmiron. Those who are helped by elmiron report that it's well worth the wait.

It's possible to have just pain and frequency with IC. We can be so different in our symptoms.

I do think it's important to stick with the IC diet for at least six to eight weeks before deciding it doesn't help. You'll find the link to food lists in my signature below.

Sending healing thoughts,
Donna

[squirrel]

Hi Mandy,

welcome to the message board!!!

I really agree with what Donna said...Elmiron can take a long time to show any effects...the same goes for dietary changes...

I met an IC patient once whose main symptom was pelvic pain...she didn't suffer from urgency at all...in fact she only had to go to the bathroom about 4 times a day..which sounds pretty normal to me ;-)

[kap7450]

I have not been diagnosed with IC, but my symtoms are mosly frequency sometimes some dicomfort in the vaginal area. I see my Urologist tommorrow and hope to get some answers.

[jvr]

Hi,

I am one with not a whole lot of frequency, but mainly pelvic pain. I have never peed more than 5 times daily. Took me awhile to get the IC diagnosis because of that. I think I'm more of the exception than the rule obviously, but it can happen. I agree that with everything that has been said, but I wanted to emphasize the importance of getting your pelvic floor muscles tested. Some of your symptoms do sound muscle related in my personal opinion....

Jill:hi:

[mandy2888]

You ladies are so, so very helpful.
I think i will make an appoitment to get with Family Doc again and see if i can get a referral to have some testing.
It is so odd that you mentioned the Pelvic Floor Dysfunction because i had just stumbled on to something I was reading about that. It sounded very much like my symptoms.
I am going to do some more work on the diet. I have eliminated the caffeine and citrus, but could work much harder on learning the rest of what is involved.
Again thank you so much for the comments. I feel very blessed for the input you provided.
I hope to keep up with you guys and hope agian that you are finding some relief tonight!!
-Mandy

[ItIsWhatItIs]

Mandy,
I know it has been a while since your post and you might already have your answer but in case you don't i just wanted to add something to the already helpful advise you've received. I just went to a physical theropist today for my IC and she stated that she has had numerous people come in because they were told they had IC but in fact they just had pelvic floor dysfunction. Either way, physical theropy for pelvic floor pain can be a big help so i would advise that you get a referal for that.