newly diagnosed? Scared and have some questions

[happy36303]

I've been diagnosed with endometriosis since April of this year, even though I've had cronic, constant pain for 3 + years. I also began to notice that I had pain when my bladder was full, and when i would begin to urinate,and when sitting for long periods of time sometimes causing very excrutiating pain. Over the past 2 months, it has been non-stop. I had to visit my uro on Monday because I also have a tumor on my kidney that needs to be scanned every 6 months. While I was there, I mentioned my symptoms to him, and told him that My GYN suggested that I might have IC.
My uro did a cystoscope in the office, and before he even got inside my bladder he said that he could see that my bladder was extremely inflammed, and that indeed, he thought I had IC, but he also said that he wanted to do a hydrdistention to make sure nothing else is going on, but did not elaborate any more than that. . . . . What else could it be? I'll be honest in saying that I am a little bit scared that he did not give me more information than that. I did try to talk to him about it, but he seemed rushed, especailly becasue I don't think he was planning on doing a cysto on me . I would appreciate any information you can give me.

thank you.

[Katrina]

:welcome: to the ICN!
I suspect your uro wants to do a biopsy to eliminate other forms or cystitis...
cancer,
follicular cystitis
Eosinophilic Cystitis
All of which are very rare compared to IC and it is unlikely it is any of those since to me you sound like an IC patient for sure. Endometriosis is very common among IC patients....I have/had it and I am sure many of your other replies will say that too.

I wouldn't worry about this much since that is a normal part of the elimination process. IC is in part a diagnosis of exclusion so eliminating those things is a part of that process.

One thing that you can do now....is take a look at the IC diet which you can find in the handbook

http://www.ic-network.com/handbook/ this is an essential link for everyone with IC. It is very informative on meds, living with IC, and self help....take a look!!!

http://www.ic-network.com/forum/showthread.php?t=7562 this is thread of pain relief the second page has attachments I believe the last attachment is the list of pain relief ideas.

http://www.ic-network.com/forum/showthread.php?t=27584 newbie kit moved to newbie board from the oldies to the newbies

:grouphug: contact me anytime I am here for you! :grouphug:

[happy36303]

:hi: Katrina,
Thank you, that does make me feel better. Thank you for the links as well. Can you also tell me if it is common for someone with IC to have problems sitting for long periods of time? I notice that after sitting at my desk at work all day that I feel much worse, strenuous physical activity also causes pain, which is extremely frustrating to me. I used to be a very active person. I am only 33 years old but feel like I'm 80. I know that a hydrodistention is supposed to help the pain, but does your energy return too? I am trying to be very hopeful and positive about this,:pray: especially if it's true that it can provide pain relief for up to 6 months.

Thanks again Katrina!

[Katrina]

It is pretty common especially if you also have PFD. Usually if you only have IC your biggest problem would be movement but it is possible that from standing too much your bladder is extra sensitive at some points.
What is likely though is that you have PFD as well as IC...and if that is the case sitting for a long period is hard...it is one of the things that can really bother the pelvic muscles! IC and PFD are often together. About 70% of IC patients have PFD...including me.

hmm the hydro stretches your bladder...giving you the ability to hold more...
I don't give it much credit for relieving pain...it is better at relieving frequency. It may help energy if your lacking energy mainly from getting up to go at night...since you may not have to do that at much.
I would think that it may lesson pain somewhat if part of the pain is from always feeling like you have to go....but with there being so many different reasons IC patients have pain and so many different types I am not sure if it will...although these days many doctors do a rescue instillation while doing a hydro....they are great for relieving pain...if that is in your doctors plan than you have a good chance of pain relief and more energy....energy in part because suffering causes fatigue...and bathroom trips cause fatigue.

[ICLori]

Welcome, Happy! You'll find wonderful people here, and tons of great information!

Right now, you are going through the worst of it - the time before you get on treatments to help you feel more comfortable.

Hopefully soon, your doctor will give you some medicines that will help you to feel like your old self again. Although IC is incurable, it can be managed in most cases, and most IC'ers feel pretty good most of the time. A good percentage, in fact, never feel any bladder irritation at all! I think once you find that your bladder pain is gone, your energy will return to normal. Pain apparently is very taxing and wearing on the body!

I hope the hydrodistention provides you with a good long remission (you may have increased symptoms, however, for the first week to ten days, and perhaps your uro will be willing to prescribe pain meds for that period of time) and also that your uro starts you on some meds that will help you be comfortable when the hydrodistention benefits wear off.

Blessings,
and good luck,
Lori

[happy36303]

:smile tee Thank you Lori! I praying that this works. I've been on pain meds for about a month now, and they only help occassionally, and I would love to not have to take them .. . . at least for awhile:woohoo:

I appreciate the support and advice on this site. I am amazed at how fast people respond! Thank you! It's nice hearing from people who are going through the same thing!:dance:

Kathy

[happy36303]

Thank you Katrina. I also noticed on my pre-oporders something that says DMSO, and bilateral retrograde? Do you know what these mean? Is PFD (Pelvic Floor Dysfunction?) I know very little about that. . . Can you tell me more? Thank you

[happy36303]

Katrina/Lori:
Forgive me for all the questions. . . Over the past year, I have suffered from appendicitis, endometriosis, I was diagnosed with a tumor on my left kidney and mitral valve prolapse, and now IC. Does anyone know if all of this is somehow related? Could it be that my immune system is just shot? I also cannot gain weight no matter what I do. I'm falling apart!!!!

[Katrina]

Are you saying your having DMSO with your hydro? Ouch. If so please make sure that your DMSO is AT LEAST 25 % RIMSO OR LESS! Anything higher can do dammage to the bladder! It may be something you would rather wait on and make sure you discuss it and research before doing.
IT is not a rescue instillation. You may want to mention to your doctor that you have heard that rescue' instillations are the best treatments these days and you would prefer that first. It basically means different drugs put into your bladder.
yes PFD stands for Pelvic floor dysfunciton....
PFD newsletter posted http://www.ic-network.com/forum/showpost.php?p=256636&postcount=11
In short it is a tightening or weakening of the muscles of your pelvis. Most patients with IC have a tightening ....which can later lead to a weakening as well. It can cause the muscles to not function correctly...causing sympotms like burning with urination, urethral pain, nerve like pain in the pelvis...retention,burning, stinging, a tight feeling, and other things....listed in that link.

If you click on a person's name and go to their profile you may be able to find other ways to contact them....If you want and can feel free to yahoo me at teeger671. Your not alone :grouphug:

[happy36303]

Thanks you Katrina!

[Katrina]

Don't feel bad for asking the questions :grouphug: You have been through a lot in a short amount of time....your not alone here...we will help you.

I don't know why patients with IC often have so much going wrong in their bodies but I don't it is just a coincidence....unfortunatly it may not be something that can be easily explained...it may be a different thing that connect them in each patient...hopefully whatever the case we will have the answer someday.


I know how you feel about gaining weight. My insurence considers my low weight very high risk....I have inflammatory bowel disease and loose blood in stools almost daily, on multiple strict diets, and so many other reasons as well that it is a hard struggle.
I had or have endometriosis...I have had a hysterectomy but since I still cannot tollerate estrogen without an endo flare I am guessing i still have it.

A large amount of IC patients have endo.....I would say there has to be connection of some kind that ups the risk.

Many IC patients have difficulty with their immune system....but not all. Could that be a connection with you...maybe.

I know how you feel about falling apart....there are things wrong with my body all over....I seem to be able to get them all to improve and all get worse...My signature has a list of my illnesses...it is usually a never ending story. I am here for you.

[L. Thomas]

Silly Questions???:loco:
I don't think so.
The questions you have the same that others have.
They just haven't asked.
This is the palce for those that need support and suggestions.
:welcome:
________
Philippine girl Webcams (http://www.girlcamfriend.com/webcam/asian-girls/)

[happy36303]

:smile tee Thank you all for the wealth of imformation! I feel better having some answers and by knowing there are others out there going through the same thing!

Thank you!:hi:

[Zygala87]

Hello Kathy. You are so young and have been through a lot. I am very sorry. I am 63 and came down with IC just a few months ago. Wow was I ever scared and filled with questions. This site has helped me greatly. First I went on the IC diet big time. Next I had hydrodistention while I was "out" in the hospital. I went from a 9 in pain down to a two. I know I could go into another flare but was told by my Uro that he would do another hydro when that happens. I hurt with a dull pain every time I take a car trip as long as an hour's drive. Plus when watching TV, I must get up and change chairs often. I don't know why this happens. Perhaps sitting puts pressure on the bladder. A long walk through a store, shopping, will also cause the same thing. I have major and minor pain pills. I take a minor pain pill so I can travel to see our Daughter who lives an hour away. I got angry that IC was taking over my life and decided to fight back. I spoke with my Doctor and explained why I need both pain meds. He understood and was able to help me. I have the major pain pills only as an insurance should I go into a great big flare and it is awhile before I can get help. Life has gotten better for me yet I feel I will never be "normal" again. Having a great Doctor and a loving understanding family gets me by one day at a time. You may not think so now but there is much help for you. Ask any questions you need as they not only help you but help all of us here. IC affects everyone differently. Keep us informed. We care. Please note: I never drive if I have taken any kind of pain pill. Someone else does the driving. Hugs, Ziggy