New Here - Hello

[deadra]

Hi everyone!

I'm new to this site, trying to read everything!

I was diagnosed with IC about 3-4 wks ago. To make a long story short, I kept having uti's after my hysterectomy on Sept 13. Ended up being sent to a Urologist...he sent me for an abdominal ct then performed a scope in the office .... results were IC.

I have also found out that I'm Hypothyroid. So I'm taking Synthroid daily.
I did have EXTREME fatique! Sometimes, I really felt like I would go into a light coma when I would close my eyes...I literally shook inside and it took a lot to just wake up and get moving. But, the synthroid has helped tremendously.

I can tell from reading your stories that my IC is not as severe as some. My main pain is my back! I've had a back ache for 3-4 years now. I first noticed it when I awoke in the mornings, then it progressed to waking me up during the night...now I have pain during the day -- not extreme, but very bothersome.

Sometimes, it takes me a little time to stand up straight after sitting or riding in a car - have to do it slowly!

Also, I've noticed my feet hurt when my back hurts too - that's odd, but the two are related somehow. I have spoke with a few others that have leg and feet pain also.

My urologist put me on Doxycl for the uti after my surgery - caused from the catherter. He also has me on Prosed Ds - it's a blue pill, turns the urine blue...now that's a sight!!

I do have the abdominal pain - more like a pressure/fullness, but it's not extreme either ... just "uncomfortable".

I have been having more urgency and frequency the last week or so - am wondering if it's getting worse.

I haven't tried the diet yet, but my doctor did give me a sheet with the "don't eats". But honestly, I can't tell that food is bothering me. I do feel better since I'm not drinking the grape and cranberry juice tho. I was drinking that for the uti!!!

This is just such a weird disease - I'm still in shock that I've got it!

[Claredale]

Regarding the diet. The way most of us found out what foods caused pain was by eliminating foods, so we would just eat a couple each day and if that didn't bother us, then add a couple more. It is tedious. I found that I am mainly triggered by citrus, so I am not so diet sensitive. I can have a soft drink like Pepsi from time to time, but normally only by lunch and then drink alot of water.

I also take Proced DS. It helps me alot with my urethra pains and spasms. It takes most of us some time to find the right things med wise to get on the best combo as well as figure out what not to eat.

I also find that the heating pad is good for riding in the car. Just purchase an AC/DC adapter and plug it into your lighter and then plug in your heating pad. I don't go far without it. Even though I don't have as bad an issue with my symptoms lately, I still get a little irritated when I am sitting for a long time like in a car.

Try to get sleep whenever you can. I still have days here and there that I have to go take a nap just so I can get a jump start.

Hugs,
Tracey

[karen10]

Hi Deadra :welcome:
Sorry to hear you have been given that diagnosis. I've had chronic UTI's for many years, but only recently was diagnosed with IC. I'm still trying to wrap my head around it too. Like many others, I have other chronic conditions that I am used to dealing with, but this one has been the most difficult and initially most frightening for me. I'm encouraged by everything I read here despite some of the painful stories, as well as a lot of the newer research. I have a "mild" case and I'm hoping with careful diet and treatment, it will stay that way! I've also had back pain like you describe on and off for years. Never thought it was connected!

You can learn so much here! My personal advice is always check out everything you read/hear with other sources AND your doctor! Finding a good IC doctor really makes a difference too! My urgency/frequency was really helped by adhering to the diet, but everyone is different, and some people aren't diet sensitive.

Stay positive, there's lots of hope! :smile tee

[SharonA]

Hello and :welcome: to the ICN...

I am so glad to hear that you are trying to learn everything you can about IC, but take it easy. It can be overwhelming at first because there is so much information available here.

It is important to learn if there are any foods/drinks that increase your symptoms. The IC Diet information http://www.ic-network.com/handbook/diet.html gives a list of the 5 worst foods for us plus some other very helpful tips. Take a look at it and see if you are eating/drinking anything listed other than the grape cranberry juice.

:):):)

[GriffsMommy]

:welcome: to the ICN! I'm sorry you have IC but happy you found us. You will learn that everybody here has their own twist to the IC puzzle. I hope you start to feel better soon and if you have any questions, that's what we're here for so ask!

[deadra]

Thank you all !!!

The prosed ds does seem to help. My pain is better. I know I need to look over the ic diet. And I will, but knowing me, it will be when I have another flare up!

Hey, can someone tell me what I need to do to add my signature? I see all you have siggys and I'd like to add one...but I don't see where ... I'm missing it?

Thanks in advance!!!

[leelee88]

Hello and :welcome:

[deadra]

Ok, I figured my siggy out.

I was just reading what procedure my doctor actually performed....Cysto With Dilation. Not a cheap procedure either. Thank goodness I have good insurance.

I've noticed that a lot of you also have endometriosis and/or fibromyalgia. I also had endometriosis and now I'm wondering if I have fibromyalgia.

I read some on fibromyalgia - said it was pain in the muscle, joints, nerves - no cure. Usually is in the neck, shoulder and back but can be anywhere.

Well, I've got this pain in my shoulder and neck. I've had it on and off for years - it's not a pulled muscle or anything like that....I'm thinking it's fibromyalgia. OMG, it was sooo bad this morning, I just about cried and thought I might have to go to the hospital! Last night I even took a pain pill - had some left from my hysterectomy - it did ease the pain some - but not totally.
So, this morning my husband told me to rub a muscle cream on it and take some anacin - All I can say is....Much, Much Better!

The more I get to thinking about having IC, the more I believe I've had it since I was in my teens. There were times I would go visit the Chiroprac. because "my back would go out". I would hurt severely on my lower right back - there were times I could not even straighten up, barely walk, sit or lie down....the pain was soooo bad. I thinking those were "flare ups" and we just didn't know what was going on.

It's funny....I get to thinking back and it all makes sense now! I probably never would have put it all together without ya'll....the information on this site is very helpful!!

[deadra]

One more thing, I also read with Fibromyalgia that most doctors won't diagnose it unless you've had pain for 3 months and have 11 pain points on your body. Well, I can probably count 20 tender points on my body - I always wondered why I have tender/sore spots on my head - also my muscles and joints.

This is just too much!

[ICNDonna]

A diagnosis of fibro is made by tenderness at specific places on the body.

I'd just like to say :welcome: to the IC Network --- and encourage you to put yourself on an IC diet so hopefully you won't flare again.

Donna

[deadra]

Thank you! I do have the tender/sore areas...have had on and off for years.

Yes, I do need to try the diet - I'm sure it would help.

I do know that caffeine is a trigger for me.....especially in tea. I have been drinking decaf tea for several years now. I ran out of tea bags and my husband picked some up for me, but he bought the regular bags.....I did have a flare up after drinking the caf tea.

I guess I'll try the choc next. Trying to cut it out as well!