Newly diagnosed and in pain

[DianeRN]

I was just diagnosed with IC after a year of what I thought were recurrent UTI's. My pain was worsening, but I was still able to work (an RN in urgent care, on my feet all day). My doctor started me on bladder instills of heparin and lidocaine. I've had 3 so far, and the pain is much worse. I'm in pain all day, every day. Has this happened to anyone else? I'm due for another bladdder instill tomorrow. My doctor is pretty quick with me, doesn't like to answer questions. I don't even know what else to try. I'm on cystoprotek, but that's about it. I thought the pain might be from constipation, so I tried laxatives, but still have pelvic pain and lower back pain. I'll get my urine tested tomorrow to see if I have a UTI also. I'm feeling really depressed right now, had to take some time off from work on FMLA because I was doubled over all the time and just couldn't work anymore. Please any advice???

[formom]

:welcome: DianeRN! I am soo sorry you are in alot of pain right now. The first thing you should try is the IC diet which you can find I believe at the top of the page. That eliviates alot of pain for starters. Second, has your doc ran any other test to see if you have IC? It can be very overwhelming, we all know too well, but it really takes time to see what works for people and you have to start with what your doc recommends first but you can start the diet in the meantime to try and see if it relieves any pain.

Are you seeing a uro or a regular doc? You should really try and find someone with experience with IC. I hope you get some relief soon as it is hard to give advice right now without really knowing what you had done.

Try and relax and get as much info as you can to take to your doctor and hopefully they can get you started on another med soon. Good luck to you!

[DianeRN]

I was diagnosed about 3 weeks ago by cystoscopy by my urologist. I've been following the IC diet, taking pain meds only when I really need it, usually after my bladder instills. I'm really sore the next day. He gave me some Percocet but I'm just about out. Thanks for your quick reply!

[sickofmybladder]

Diane -

First let me say :welcome: to ICN. I'm very sorry you had to find us this way. Pain is a common symptom unfortunately - and in my case was definately the reason I persisted for so long to find some doctor that could figure out what was wrong with me.

There are quite a few nurses on the board - who will hopefully respond to your post as well - some still work - some don't. But take this time off - to allow your body to begin healing.

Regarding the instillations - some of us get wonderful relief from them (I happen to fall into this category) but for some of us they either don't work or the patient finds out the actual act of cathing brings on a flare up of symptoms. I would definately talk to your doctor - the instillations you are on - should not have a painful side effect. It doesn't sound like you are very happy with your current doctor (of course I could be wrong) - if this is true - I urge you to find another doctor. Your doctor should be part of your team - it is so important as you seek out various treatments etc. Here is the link to the list that has been created by some members here: http://www.ic-network.com/md/ - also you can ask others on the board if they have any suggestions.

Lastly, you should definately try the diet - let us know if you have any questions -
I hope you are feeling better soon.

[SharonA]

Diane...:welcome: to the ICN...

If you will take a look in the Patient Handbook (the link to it is in my signature) you will find a lot of information about the different meds/treatments available.

If you are not getting proper care from your doctor, you might want to find another one who will take the time necessary to help you.

:):):)

[leelee88]

Hello and :welcome:

There are a lot of treatments out there besides the instills, if you feel they are not helping you could ask for Elmiron. That would be the first medicine that I would think Drs would prescribe.. Well again welcome and if you need anything please do not hesitate to ask..

[Becky Boo]

Hi there Diane :welcome:
I've been diagnosed since begining of May this year, so I know how scary & overwhelming this can be, we all do! You're in the rite place to get lots of support & advice that's for sure OK, so any questions, ask away! If you need to vent your anger & confusion, that's OK too!
The IC diet can be scary at first. I know when I started it I felt like everything made my pain worse, but let me reasure you things do get better! You may not be able to eat what you like as before, but you do find comfort foods that your happy with & you do start finding more & more things that you can eat OK! My favourite hot drink now is hot water & honey, ummmm & for me very bladder friendly!

[snowgirl]

diane

are you on elmiron, atarax or elavil? I could not do bladder instills too painful for me. By the time they came out with instills my bladder was already beyond instill repair and or relief.

I am a nurse also . Unfortunately, almost two years ago I had to resign as there were no jobs at the hospital I could do. I needed part time and 8 hours- preferably desk job. No jobs and 8 hour shifts I wish they would have never went to all 12 hours as the nrsg. population ages they are going to find out they can't do it. I am 47 and majority of the RN' s in the critiical care units are 57 and they are struggling working 12 hours.
So, I had to resign as there was no job that I could do and they don't make or help you with a new job. I was told return to former job I knew I couild not do, work prn with no benefits, resign or be terminated. I resigned.
21 years of seniority gone in the union. I harobor a lot of anger towards my employer still after all this time and still working on that in therapy. Good Luck
If you are FT look to cut PT our PT rn's get the same beneftis as full time rn's
Vicky

[DianeRN]

I'm on Elmiron, Atarax, Lyrica, Cystoprotek, and meds for migraines. That's terrible that you had to leave your job. Hospitals should be more understanding. I work in an urgent care center. I'm on my feet all the time also. I've taken some time off on FMLA now to rest and hopefully calm things down, but I'm very nervous about going back to work. Full time where I work has benefits, whereas PT does not. I am 43 and have 2 kids to put through college. Being on my feet usually makes the pain worse. That's my biggest complaint. I have some frequency and urgency, but pain is by far the worst symptom.

I understand your frustration and anger at your previous employer. That's a lot of seniority to be forced to give up. Write back anytime you need to vent and thanks for your reply. Diane

[plmokn]

I was just diagnosed with Ic last spring but I started treatment for what my doctor thought was IC in January. I was put on Lyrica as my main medication which helped me tremendously. We had to gradually increase the dosage so it took a while to work but at 150mg a day I feel so much better. I wasn't able to get down to almost no pain until I added Celebrex and Atarax to my treatment plan as well. I can get down to no pain now as long as I stick very strictly to the IC diet. For me instills would never work although I haven't tried them directly I had a horrible reaction to a ureoscopy (cyscopy sp?) and was in the hospital for a week with unmangable pain. You should talk with your doctor to see if this treatment is really helping.

I know that in my experience I had to change doctors 7 times until I found one that could properly deal with my condition. It is really helpful and stress relieving to know you have doctor that understands and can patiently deal with all your going through. My doctor takes as much time as I need each visit to talk with me even though I know she is super busy. The first time I went I talked for almost an hour and a half.
I hope you feel better soon.

[DianeRN]

I'm glad you're feeling better. I just recently started Lyrica at 75mg twice a day and noted an immediate improvement. I'm starting to get some breakthrough pain now, so I'm going to talk to the doctor about it. I'm also scheduled to go to pain managment in Jan. Do you get treated by a urologist, gynacologist?? I'm looking to switch doctors now. The one I presently have didn't return 2 of my phone calls last week. I was crying in pain. You are so lucky to have found a doctor you trust. Thanks for your concern and I hope you are feeling well also.

[aprilchen]

Hi Diane,

I saw your story on here and have read most of your posts too since diagnosis. I wanted to tell you to hang in there! As for who to get to treat you, if you can get a Uro-Gyn that would be great. There aren't that many of them out there, but they KNOW IC in and out. I have been told several times that the Urology courses for regular doctors and Uro's only devote about a paragraph to IC. A Paragraph???? How ridiculous when it has such an influence on our lives! Also, my husband and I looked this up....if you combine the number of cases of MD and MS, there are more sufferers of IC and that's KNOWN sufferers. What about those people who hurt, are told they are crazy and don't know they have it?

A couple of recommendations:

1. I see you're going to pain management. Good choice! Most regular docs and even Uro's won't handle Chronic Pain and unfortunately, that is what IC is seen as.

2. Pain medications will only cover it up, so I would recommend a good specialist. Mine is at the Cleveland Clinic. I also saw one before we moved at Oschner's. Instillations are not always for everyone. They were a pain, really painful and such when I started. However, once I saw my specialist and he started me on something called Cytotec with heparin and lidocaine instillations (crushed), it made a HUGE difference. See my link with the story below. My recent difficulties have been because of a miscarriage, bleeding for a LONG time and pain from that. I do think that upset my IC, but I have done so well besides that.

3. An awesome book to read to help you put this in perspective is Robert Moldwin's, The Interstitial Cystitis Survival Guide. I think that is what it is called. Try any search engine with his name. They sell it on here too, I think...and any major bookstore.

Good Luck with it all and keep in touch to let us know how things go.
-April

[DianeRN]

I'm so sorry for your recent problems, but thanks for contacting me. There is a uro/gyn in the area, and I was going to call her today for an appt. Do you see a urologist also? I also have the IC survival guide you mentioned. I've read a little so far, but there's a ton of info in there that I find helpful. I'm also going to call my present urologist and ask what the problem was that he ignored my phone calls last week. I don't think I'll be going back to him. Thanks for all your support and I hope things go well for you also. Diane

[snowgirl]

I'm on Elmiron, Atarax, Lyrica, Cystoprotek, and meds for migraines. That's terrible that you had to leave your job. Hospitals should be more understanding. I work in an urgent care center. I'm on my feet all the time also. I've taken some time off on FMLA now to rest and hopefully calm things down, but I'm very nervous about going back to work. Full time where I work has benefits, whereas PT does not. I am 43 and have 2 kids to put through college. Being on my feet usually makes the pain worse. That's my biggest complaint. I have some frequency and urgency, but pain is by far the worst symptom.

I understand your frustration and anger at your previous employer. That's a lot of seniority to be forced to give up. Write back anytime you need to vent and thanks for your reply. Diane

how nice of my employer right. I gave them 20 years of excellent performance reviews and 2 sickdays a year. We had a union also- no help there for 50.00 a month. I had one bad year and bad hydro and exhausted all my fmla which cost me my job. watch your fmla time. Iworked full time ten hour shifts only sat for 30 minutes at lunch . It's the standing and all the walking that puts you into flare. I had to lift pt's you probably don't lift much in urgent care.

Watch your fmla time keep your own personal calendar off time taken off. Take it when you need it. Our part timers have same benefits as full timers- you can say the union is responsible for that. So, I dropped to part time but we don't have any 8 hour shifts left inthe hosp. all 12 hours. I need part time 8 hours - 24 hours a week I think I could maybe do that.
Keep resting while you are off pelvic rest- off your feet is best. Let me know how the job goes. Good Luck. Yes hang unto your job as long as you can.
Cobra is outrageous. Vicky

[DianeRN]

I'm so glad you wrote me back. I've been out of work on FMLA since 10/31 and plan to go back 12/29. It ended up being such a long time because nothing they were doing was working and I was unable to get doctor appts. The lyrica is working, but I'm still getting days of breakthrough pain. The problem with my current job is that I can't really call in sick. They frown upon it like you wouldn't believe. I had a family emergency with my son last year and took off 2 days. I was called into the supervisors office and was told I had excessive absences. I'm so afraid of going back, getting a flare and not being able to work. I don't want to lose my job. With my job though, I may be able to get a call nurse position. I would be able to work from home taking nurse calls. The company would set up everything for me at home. Sounds great, right, but I'm sort of an adrenaline junkie. I love the patient contact and never knowing what's coming into the center. I may have no other options though.

Are you working anywhere else now? Where are you from? Hope you're feeling better. Diane