New and Scared

[MariaMS]

I am new to posting here. Tomorrow I am seeing a urologist for pelvic/bladder pain. I had surgery on my uterus about 12 weeks ago for a variety of issues including polyps which were removed, D & C and some othr things. Since February I have had twinges that my bladder was reverting back to a time in my late 30's (20 year ago) when I was having issues w/ pain, pelvic pain, pain w/ urination and so on. After extensive Gyno and uro testing they basically said that there was nothing wrong. I soldiered on and eventually the burning, pain in my thighs and just above the thighs on either side went away. Suddenly, in February I began to experience some minor bladder issues which my doctor wanted to label UTI's but after cultures he said no infection. I am so angry with him for not helping me to proceed w/ action that would get to the root of the problems. I was finally referred to a wonderful gyno/surgeon who took care of some issues I had been having. After the surgery the bladder issues became more pronounced but nothing like what I have read w/ urination frequency. Mostly burning around the bladder, pain when leaning on that part of my body (sleeping on stomach) and so on. Suddenly 2 weeks ago I had what I can only call an attack which came fast. It was extreme pain in and around the bladder and urgency to void even though it might just be one tiny drop. I have no idea how I got through that night except I took the Pyrideum the gyno had given me and one of my husbands left over percocets. I was in terrible pain. Since then it has been minimal but i am watching every single thing I eat and staying away from any foods that might be a trigger. Tomorrow I see a new doctor to me. He's supposed to be a highly regarded Urologist and according to my gyno has a great bedside manner and is empathetic but I am really very scared. When I read about IC it turns my stomach but to think that it is something much worse is terrifying. I have had 3 years of extreme stress and I thought I was taking care of my physical issues and moving forward. Now I'm thrown back quite a bit. Any words of encouragement would be so helpful. I'm so scared to see this new doctor that I'm sick to my stomach-literally.

Maria

[passion4life]

Welcome

I am so sorry for why you are here but so glad that you have found a place of wisdom, understanding, encouragement, and fellowship. I was diagnosed with IC in 2001. I really did not understand the depth of my problem or how it could profoundly change my life. I did notice that some foods were triggers but for the most part I was not affected. My "flares" would last only about a day and life resumed as usual.

Fast forward to December 2009/January 2010. I started experiencing flares but these flares were different.....no end in sight! I was blessed to find this site in September 2010. The members are full of warmth and wisdom ever ready to share their experience, strength, and hope.

I believe you are on a path of recovery. I do not know how long or what it will take but I believe that you will find your way. It may take some time but we do get better and live productive lives. Have the best day you possibly can You are in my prayers

[MariaMS]

Thanks!

Thanks for your reply. I'm just having a terrible day dreading my appointment tomorrow. I'm usually a brave person but this has really thrown me. I think the experience I had 20 years ago is clouding everything. Being told I had nothing when clearly there had to be SOMEthing makes me worry that I will just be brushed aside again.

[MariaMS]

Does this sound like IC?

For those of you viewing my post, does this sound like anything you are or have experienced? Could use some support here.

[earthlady]

I think I pretty much had it all. Burning, urethral pain, bladder pain, bladder spasms, frequency, lower back pain, and probably more but can't think of the rest of the dreaded pains at the moment. It's never been as bad as when it first started though and has actually been in some type of remission for the past several months. The OAB meds were not a fix for me I found out. It slowly got better and better by watching my diet, using ice and sometimes heat, using prelief with questionable foods, supplements I added, time, and pelvic floor stretches. Benadryl in the beginning (can't take Atarax) was beneficial and so was a low dose of Surmontyl. It does take a while to find our own individualized treatment that works for us so don't lose hope you will find what works for you. I think my best advice would be to not panic. I did in the beginning and it made it oh so much worse. I had to go on Ativan for a while which actually not only helped my anxiety over all of it but also helped my bladder spasms.

[MariaMS]

1st Visit

My 1st visit to the Urologist was ok. I liked him. I go back on the 15th for a cystoscopy so I will know more. Symptoms are calming down but still something feels wrong. I'm not taking the pyridium anymore, staying away from the offending foods and drinking lots of water. I saw my primary care physician who offered some thoughts about pain on right and left way down low. I had already looked at the anatomy of a woman's pelvic area and saw the 2 ligaments on the left and right sides and wondered if they were causing me some nerve pain due to the fibro and might have been thrown into action after the gyno surgery. Sure enough this is what he suggested without me mentioning it. I'll be interested to see if the urologist has anything to say about that. I'm a bit nervous about what he's going to find with this cystoscopy. Actually, very nervous but it's a must. A hell of a summer to go through and I'm feeling pretty resentful today. What a lousy mood I'm in!
I'm ashamed to admit it.

[DonnaBee]

Maria,

It sounds like you are on the right path. I was passed around from uro to uro with almost every diagnosis possible except IC for 24 years! If you are in a lousy mood today that's ok, honor those feelings and use them to propel yourself along your healing path. Hopefully you will find, as you begin to feel better, your mood will be better, too. IC is not a death sentence, and once you have the proper diagnosis, then you can find the right healing regimen for you, whether it be IC or something else.

[MariaMS]

Thanks, Donna. I'm worried a bit because this uro said that he didn't think this was IC. So what the hell is it? Today I spent the day at my local LSS (rubber stamping/scrapbooking) taking 2 classes from a great teacher who came to MD all the way from Portland, Oregon. He teaches a watercolor technique and different ways to use artist's colored pencils. Anyway, I have been staying close to home. The classes ran from 10:00 to 3:00 and I started to hurt around 1. I didn't have that bad a week at all and suddenly there I was, miles from home and feeling IC symptoms. Now, if this doc says no IC Monday then I want to know what it is.

I'm worried & until I at least have a diagnosis I will be worried. I'm sure you know how that feels.

[MariaMS]

Wish Me Luc?

I'm having my cystoscopy tomorrow. Hoping for some answers and a better feeling overall.

[Toto]

Hello...I just want to say good luck on the procedure. It's good that you got the appointment and procedure scheduled right away so you can know what it is as soon as possible.

As someone else said here, IC is not a death sentence, and I've read that many people here have their condition WELL under control that it doesn't bother them so much.