lost and angry

[ladylin]

I feel a little lost. I’ve been in pain for about 6 months or longer. The doctor diagnosed me with IC last Tuesday. But now that I think about it and have read material regarding IC about how someone can have it for a couple of months, then it “goes away” for a couple of years and then it returns. I had problems with cramping, painful sex, and other issues when I was 17-18. The doctor basically told me it was nothing and put me on medicine that did not work. But I was also in an unhealthy relationship so I figured that must have been it. Now I’m 21 and about 6 months ago I started feeling the cramping, urgency to go to the bathroom, lower back pain, had the first UTI I ever had, then another one within the same month. I think for me the worst symption I have besides having to go to the bathroom so often is that I can barly walk anywhere without hurting. If I even walk to my next class or even to work, by the time I get there I want to collapse from the pain. I don’t even remember the last time I could walk somewhere without hurting. So I can even use exercise as a means to end my pain or flares. I have been to several doctors and had several tests done, but no one seemed to understand why I was hurting the way I was until recently. So right now I have changed my diet, and am taking Ditropan once a day, and I am schedule to have bladder extension on July 11th, which I’m terrified to have. I think I am just frustrated because the diet or medicine doesn’t seem to be working (I know I just started) and my pain seems to worsen. I’ve had to not go into work because it hurts so badly. I guess my question is how can I have a career and have IC? Right now I am in college and studying social work and have a part time job. I have 2 and ½ years left before I graduate and go to get my masters in social work. I am scared that I will never get my IC “under control” and be unable to do what I really want to do with my career. There is no way I can help my future clients if I can’t even help myself. I am also really worried that when fall semester starts up again that the stress from classes, etc that I will have consent flaring and I will never get anything done. It is just frustrating because I don’t know anyone that has IC in my area and I wish there was a support group. I am lucky that my boyfriend is very understanding as well as my mom, but it is not the same thing. They don’t have any of the answers to my question either. And I feel bad always talking about it with them. I think I have just passed through the whole denial stage and just went straight to anger and fear. I am angry that my college years are being spent in pain and depression. And I am scared that IC will take over my life and that I will never get to enjoy it again. Sorry that this is very random, I just have so many questions and feelings that I don’t know where to start, I am just worn out.

[ICLori]

Hi, Ladylin, welcome! I'm sorry you have IC, but please don't despair, because you've already gone through the worst part - waiting to be diagnosed.

Oh, and a hydrodistention is really not so bad, although it's normal to be scared before your first one. The worst part for me is getting the IV put in - I don't like needles myself - but if you can handle that, you'll be just fine! You'll just go to sleep and wake up when it's all over with. Afterwards, you will have a stinging sensation the first few times you urinate, kind of like when you had a UTI. Not pleasant, but not the end of the world, and they can prescribe you pyridium to help with that. Then you might have an increase of IC symptoms for a week or two (they should prescribe you some pain pills to help with that.) After that, if you are fortunate, you could get a remission from several weeks to several months or longer. Which is nice! Not all IC'ers get this remission, but many do - some IC'ers even use hydrodistentions as their main therapy, as it works so well to give relief!

Now, I was prescribed ditropan too at first. Mainly to rule out overactive bladder, which doctors think is more common than IC. (I don't think it is, because researchers have now shown that IC affects every 1 in 4.5 women, but docs still believe IC is extremely rare.) It didn't work for me, either. It does help some Ic'ers slightly, but generally it is recognized as a medicine that works well for overactive bladder but not well for IC. What they are probably doing in your case (what they did for me, too) was give you that so they could rule out overactive bladder.

You see, IC is a diagnosis of exclusion. They rule out overactive bladder, they rule out bladder cancer (unheard of in someone your age), they rule out kidney stones or bladder stones, they rule out tuberculosis of the bladder, etc. etc. If they are very careful, they might also do a Lyme test to rule out that. Some uros will send you to a physical therapist to rule out pelvic floor dysfunction, too, which can have symptoms similar to IC. Some Ic'ers have both PFD and IC.

Anyway, it's completely normal to have the fears and feelings you have. This is a very miserable disease, and a scary one.

The good news is, there are many treatments for IC, and each of them do help a certain percentage of IC'ers regain a normal life and be comfortable most of the time. The bad news is, there are a lot of treatments - which means you might have to try many of them before finding one that works for you.

And, one of them - Elmiron - the mainstay currently of IC treatment - can take 6 months or longer to work (hardly anyone ever feels any benefit before at least 3-4 months, and some don't feel benefit until one or two years, and others don't get any help from Elmiron at all - impossible to know until you try, which group you will be in.)

Many uros, once they diagnose IC and rule out other things, will prescribe several meds at once, such as Elavil (to help with pain), Atarax (to calm down the mast cells involved with IC and Elmiron (to help repair the bladder lining.

Some people find that instills help them, others find that they need pain medication/pain management.

Hopefully, the set of medications that your doctor will prescribe after the hydrodistention, will help you and you'll soon be feeling like your old self. If not, don't give up - some of us have to try many things before we find our "miracle."

Blessings, and welcome,
Lori

[icnmgrjill]

LadyLin,

You sound exactly like me 13 years ago. It was the summer of 1993, when I was just 33, that I thought that life was over. I had so much pain and because I didn't understand what IC was back then, was having the exact same worries that you are. When it was at its worst, walking was very painful too.

The great news, though, is that we KNOW what IC is. We have excellent self care and treatment strategies. I, like most patients, am much better now and have never had those extreme symptoms again once I modified my diet and tried some therapies, etc. etc. There is HOPE, great hope for you!

Try to remember, too, that our website works with patients who are at their worst. For every patient have a bad day today, there are hundreds if not thousands have great days and life goes on. So, when you read this board, don't assume that all patients are struggling badly. It's the reverse. Most patients don't need support and are doing better.

Now, as to working, I can only offer to you that we have judges working with IC, secret service officers working IC, pilots working with IC, doctors and nurses working with IC, teachers working with IC... and the list goes on and on. Yes, if you're in a flare, working is a challenge. But, once you get your symptoms under control... it will be much easier. College too! BTW... depending upon your degree choice, think about writing some papers on IC too. This is a great topic that I would be happy to help you with.

So... for now!
(1) Learn about IC. You've got to be very proactive and gather information from multiple sources. Think of it as a real life term paper here. To really understand how to care for yourself, you've got to make sure that you've got to up to date info. So, read our website and newsletters. Make sure that you buy the IC Survival Guide, which is our best resources in book form about IC therapies and pain.

(2) Diet modification is EVERYTHING! Don't injure you're bladder further... even one cheat a day will hold you back from getting better (i.e. one cup of coffee or soda a day are guaranteed ways to make you miserable for a long time due to the irritation it creates in the bladder). Learn about diet in our online patient handbook or by buying A Taste of the Good Life: A Cookbook for an IC diet by Bev Laumann or Confident Choices: Customizing the IC Diet by Julie Halbur, RD. You can buy these books from us at: http://www.icnshop.com

(3) If it hurts, stop and rest. This was a huge barrier for me that summer. I used to force myself to exercise and walk long distances even though it hurt like mad. IC is injury. So, if you wouldn't walk on a broken leg, then don't walk on a painful bladder. Pain is telling you that it's being overstressed and needs rest.

(4) Consider the pelvic floor muscles, as well as the bladder, as a source of pain. IC patients often struggle with very tight pelvic floor muscles. Pelvic floor tension pain feels heavier, deeper and/or more burning in the vagina. This is why heat helps. It helps the muscles to relax. So, try heat and the next time you're at the doc, ask for a pelvic floor assessment too.

(5) Fight flares early! The earlier you catch a flare, the easier it is to stop it. The same is true with pain management. So, it's important to be very proactive. If you need help with pain, ask for it. Take a look at our flare management tips or consider buying the ICN Special Report on Managing IC Flares

Oh... there's so much more I can say but my fingers are tired after last nights lecture. There is HOPE!!!!! You can get better.... but it begins with you. Be strong! Be committed to your health care. Be proactive! Be willing to ask for help when you need it.

Jill

[Babs RN]

Well said Jill, but that's why you're the boss lady, right? Seriously though Lady Lin, I had pelvic pain in college that was eventually diagnosed as endometriosis, PCOS, and finally IC(all three). I worked 2 part time jobs and finished nursing school on time in 4 years. Even with the IC, I worked up until 2 years ago in critical care and emergency room nursing. I also have a daughter born with autism that added to my decision to leave work for a while. I have severe, end stage IC with Hunner's ulcers and a bladder(waking)capacity of 90-100. I am on a combination of medications that we tinkered with until we hit a spot that my pain became tolerable most of the time. I am going back to work in August as a school nurse. I guess what I'm trying to say about the career thing is sometimes you just gotta tweak it a little. Think of what a great social worker you would be on a pain management service if you have dealt with pain yourself, or advocating for medical research funding. Your dream is still alive, just look for your niche.

Hugs,
Barb:hi: :smile tee

[ladylin]

Thank you everyone for posting, giving your words of wisdom and advice, it has helped me greatly! It is nice to know that other people have been through similar situations that I am going through now, and that you all have found ways to make it. Thanks again

[ericaranae]

I know exactly how you feel, I am also in college and am dreading my problems as the fall semester approaches. I am in my last year of nursing school and have no idea how I am to help people if I can't even hold my urine for 15 minutes. I am currently very depressed about my situation and don't know where to turn. Please e-mail me if you would like to talk more b/c I started crying when I read your post b/c I am right in the smae place right now. I hope that somewhere there is hope for us