Newly Diagnosed

[Judy777]

I have just been diagnosed with IC and Endo. I had a laporscopy with cysto/Hydro on Monday. My Dr confirmed I do have IC with ulcers. I also had a ruptured ovarian cyst that showed up on a CT scan. I had another cyst which they removed on Monday along with some twisted cord looking thing that was attached to the cyst and had wrapped around my ovaries. My doctor was not sure what that was. I just want to say what a great site this is and how helpful it has been. I have been reading info on this site and the message boards and this has helped me not "feel so alone". This site has also educated me on IC and prepared me for the diagnosis I pretty much new I had IC after reading the info on this site. I had one question what is the difference between having IC with ulcers and having IC without ulcers? Is it just veriying degrees of IC?

[Dixiefireball]

:hi: Judy :welcome: to the ICN. I have hunner uclers on the bladder also. Hunners make IC more painful. You may be able to read more informaion about it at www.ic-network.com/handbook there you will also find the IC diet which will help that painful bladder in many ways.
I hope someone can explain it more clearly to you. I know that hunners on the bladder with IC is VERY PAINFUL! In my case i have had them removed four times and they keep coming back however others can have them removed and they don't come back. Sometimes Installments help the hunners.
good luck and glad you found us.
Rhonda

[Judy777]

Thanks for your reply back. I will be looking into the IC diet, I have already started following some of the diet and noticed a big difference by eliminating coffee and all caffinated drinks. I just bought a coffee that had 90% of the acid removed and this has helped "considering I used to drink 5-6 cups a day".

[Sarojini]

:welcome: to the ICN... I don't really know the answer to your ulcers question; we are all so different. Some without ulcers have severe pain, while some with ulcers can do well much of the time... and sometimes those with ulcers do have severe pain, as Dixie said. I have 2 ulcers. One is on the top of my bladder and the other is on the left side, slightly towards the back; I notice that sometimes I can feel exactly where they are as I have pain in those spots... other times I either have pain all over or there are days when I have NO pain at all, so I guess it just depends on how your body reacts to your own IC... :)

Hope you have good luck finding treatments that help you!

[poetgirl]

Welcome to the boards! I'm sorry you've been having such a difficult time, but hopefully you'll be feeling better soon! :)

I do not have Hunner's ulcers. I'm considered to have a mild case of IC. Interestingly enough, when I talked with my uro last week, he said that in the hundreds of IC patients he's seen/examined that only two had Hunner's. Most of us tend to have pinpoint bleeding or some other kind of inflammation. In fact, because I do not have Hunner's ulcers, I had a urologist who refused to diagnose me with IC, which ended up delaying beneficial treatment for 4 years until I was properly diagnosed. I may not have been in some of the severe pain or discomfort others here have experienced, but it was bad enough as far as I was concerned!

Anyway, good luck and let us know how you are doing with the IC diet, meds, etc.

[Portia17]

I do not even have i.c. yet just cells but not enough to be i.c. but very bad inflammation and i went through hell for 6 months. Now i watch my diet, do dmso every other week now, and thank the LORD for pain management.

I agree, even though I do not have the ulcers or not total i.c. the pain was so bad I wanted to die. I have come along way but not totally there yet.

I do hear that dmso treatments does work for ulcers so don't let people talk you out of it. Like dixefireball she gets treatments and has ulcers and it helps her

WELL I HOPE I AM NOT POSTING MESSAGES FOR NOTHING AGAIN, BECAUSE USUALLY NO ONE ANSWERS ME WHEN I TRY TO HELP

[poetgirl]

Portia,

Just because people don't always respond doesn't mean they haven't read it or appreciate your messages. I'm an internet and email junkie and am on the computer all day long, but not everyone is like me. Please do not take it personally if you do not receive a response immediately or at all from others on the boards. It just might take a while. I use the New Posts option so that I don't have to filter through all of the message threads; others may have another way of reading through posts or just go to certain ones that are more relevant to them.

[Portia17]

Poetgirl

That Is Fine. I Will Go Where I Am Appreciated Then.

Bye

[Judy777]

Thanks for the replies and thanks (Portia) for the info regarding the DMSO treatments. I guess I will find out more from my Dr once I have my appointment to follow up in 2 weeks. I just had surgery on Monday. The info and pictures that I have from the surgery were given to my Husband after the surgery, so I didn't get all of the details. I do agree with all of you whether someone has IC with or without the Hunner's ulcers with or without the IC being diagnosed the pain is very bad. I feel I was lucky in getting diagnosed quickly compared to some of the stories I have read on this site.
My pain started in February and after numerous trips to the gyno for what I "thought" was a UTI. Of course the urine tests came back negative for a UTI. I ended up going to the emergency room in April because I was in so much pain. I did not know it at the time but I was having a flare I had bought cranberry capsules at the GNC store and was drinking cranberry juice thinking I had to have a UTI and I could just get myself well. The ER gave me there "guess"and they were actually right, they said it was Endo and IC. The next day I went to see a Urologist and he suspected this as well and scheduled me for the Cysto/Hydro and a Laporscopy with my Gyno at the same time. That was only 5 months for a diagnosis. Hopefully I will be on my way to getting the IC under control.

[emilyrose197377]

welcome to the boards you will find a lot of useful info about ic and support. I know what you are going through I had endo removed 4 wks ago now with cysts and adhesions. I also have Ic . I am sorry for what you are going through I know how painful it can be. If you need someone to talk to email me anytime. you are in my prayers.

Take care
Kim

[curlycue]

Welcome and good luck with what ever you choose to do regarding your IC treatments.

[ICNDonna]

I also have hunners ulcers --- and I do very well most of the time. I wouldn't know I had them if my uro hadn't seen them and told me about them --- and I saw them on a TV screen during a hydro.

Donna

[VickiB]

Hi Judy and welcome!

I was doing the same thing. -Thought I had a recurring UTI and was popping cranberry capsules & drinking cranberry juice like there was no tomorrow. Of course, as it turned out to be IC,with that treatment I only managed to make myself worse & worse! Who knew?

Since I was diagnosed with PST and have never seen the inside of my bladder, I don't know if I have ulcers or not. But whatever's in there, it sure knows how to make my life miserable at times!

Hang in there and let us know how your appointment in two week turns out.

Vicki