feel hopeless

[sshew52]

I went to the pain management doc on Tues. she upped my neurontin to 300mgs at night and kept the 200mgs am and afternnoon doses. Yesterday I felt like my symptoms were worse. the burning and the pain in my pelvic floor was unbearable. I called and asked if there was something else she would give me for the discomfort and they said that she would get back to me. She didn't.
I am going to the urologist today. But don't have a great deal of hope that he will have anything new to add. I am on elmiron, vesicare and ativan at times. I feel like I am burning even in my mouth and gastric region. I feel more anxious too. Don't know if it was the neurontin or not.

But I can't take this anymore. It has gotten so bad I can't see living this way. I can't get help, everything takes forever and then it don't work. Doctors don't know what to do to help. I hate my life this way. No hope in site.
I have prayed and asked for God's mercy

Sue
no hope

[Dees1977]

Hello

I think a lot of us have felt the way you feel right now. But you will make it through this and you will find something that helps. Are you following the diet? I know that I thought I could still have a cup of coffee each morning and it would be no big deal. And didnt understand why every night I was in a lot of pain and discomfort. I would start by looking at what your are eating and drinking and see if they are ok for people with IC. I will pray for you and I hope you feel better soon.

[sshew52]

I have been following the diet. drinking only water. eating what is is in the first column.
Medications scare me. I don't want to get hooked on anything but would like some relief. Last night I took a warm bath. It is just the pelvic floor thing doesn't quit.
I am going to the urologist today but don't think he will help. I have run into more blind ally's than anyone I know. Why don't someone think. You have to practically diagnose yourself. I thought I chose an expeirienced doc but now I don't know. I didn't even get an examination the last time I was there.
Thanks for the suggestion
Sue

[bubbe1]

feeling hopeless

Hi,

I was wondering if your uro. could speak to the pain doctors for you. Sometimes doctor to doctor works better.

Could be one of the meds just isn't right for you and you need to try something else. Don't give up. IC takes a lot of trial and unfortunately, sometimes error, but there's always something that works.

Try some things to relax, like listening to music, reading, petting a pet, whatever works for you. I know that sounds silly, but stress adds to the pain of IC, so the more we can relax our bodies, the better we feel. Deep breathing works too.

Keep posting and let us know what happens.

Sending a hug,
Laurie

[Dees1977]

I totally understand my urologist asked me what meds I wanted to be put on. He mainly deals with men and their prostate issues. So I went to another Urologist an hour away and he wanted to do another cysto/hydro on me even tho I just had one done. I told him no. He wanted to put me on Elmiron and told me to take Ibuprofen for the pain. And Ibuprofen kills my bladder. It is really sad and frustrating when you cant find any help. But please dont give up. Keep trying until you find the right doctor.

[earthlady]

I was wondering if you have had your pelvic floor evaluated for pelvic floor spasms or dysfunction. I was found to have pelvic floor hypertonicity causing spasms and pain. It was also affecting my bladder. The pt for this was a big help along with pelvic stretches and epsom salts baths. More gynos and uro gynos are recommending an evaluation for the muscle functioning in this area now. I know the frustration with dealing with uros that are more familiar with prostates in men than bladder problems in women. I went through a few of them before I found one that had the patience to help me.

[NotMyCupOfTea]

I would look into the Pelvic Floor Dysfunction too... sounds like a real possibility. Please look in to that as a possibility. I know this is all frustrating.. I just woke up with IC one day... how does that even happen?

Hang in there.. we are here for you!!!

[sshew52]

appointment today.

the urologist told me he wants me to go to Cleveland Clinic to see a uro/gynocologist. He wasn't even going to do an exam and this was the second time I saw him. I asked him about it and so he did a pelvic and internal but still told me to go to Cleveland. He stopped the Vesicare and Elmiron and put me on peridium.
The soonest appoint. with Clevland is Oct 16th.
Do you think it would help to see a gynocologist in the meantime or am I just running around like a chicken with its head cut off? Surely there is someone who knows what to do.
I will try to relax, take my tylenol,and neurontin but it is a long time til oct 16 and then what? wait some more?

thanks for all the responses. it helps to know someone knows the frustration.

Sue

[earthlady]

It's sad to say but I have a feeling that quite a few uros just don't want to fuss with this condition. Some I think would just rather deal with obvious problems like prostates or prolapses that can just be 'fixed'. It's probably good that you will be going to the Cleveland clinic. I also know the feeling of running around like a chicken with it's head cut off. I was panicking quite a lot in the beginning because I could not find anyone who I felt was willing to take the time to help me instead of throwing OAB meds at me. I did find a good one though and my anxiety levels dropped a lot.

[sshew52]

Thanks Earthlady. I am evidently not ready to quit yet or I wouldn't be planning to go to Cleveland. I feel like it though when the pain is really bad.
the peridium is for the burning but has not worked so far.

Sue

[earthlady]

It never helped me either. For me it was a waste of money, but lots of people like it.

[Barbm]

1. get back on Elmiron. It does coat the bladder
2. Add ranitidine (Zantac). You can get it over the counter. It is very safe and blocks the degranulaition of mast cells in the bladder
3. Definitely get one of the excellent books on pelvic physical therapy that you can find on this website.
4. Get some narcotics from your pain specialist!!!! If he/she won't give them to you,find a new pain specialist. pain is greatly undertreated!

[sshew52]

pain

I have had a difficult time getting anyone to give me pain meds. I can get tramadol but you aren't supposed to take this with celexa so i don't take it. I have neurontin only. I asked about valium and the pain specialist said it would not be effective for this kind of pain. I have read so much to the contrary here though.
I will try the zantac though my husband take it. thank you

Sue

[Little Sunshine]

Try and Find a Uro/Gyno

I just wanted to mention that you may want to find a uro/gyno. I have found that many of them are more in tune to a womans body and their needs....and not just a mans body and the prostate. My old uro admitted that he didn't know crap about the female body. It sounds like you might benifit from some pelvic floor therapy as well. I too traveled to the Cleveland Clinic for a second opinion. I traveled 8 hours to get there just to be told that they believed I had PFD and not IC. I wish it were true, but it's a load of crap. Turns out my pelvic floor was so tight and in so much pain, just from having people digging around in there for so long. Anyhow, I take xanax as needed to help relax my pelvic floor....and the rest of my body. I really hope you are able to get the answers that you deserve. I have found that with this disease you have to be your own best advocate. No one else understands IC, unless they have lived it themselves.

[sshew52]

Thanks for the advice. I have an appointment with a uro/gyno on Wednesday. Cleveland clinic called me today with a cancellation. It is with Dr. Barber. Who did you see?
I have lots of hope for this appointment to be my answer. I don't know what I will do if it turns out like all the rest with no help.

I agree the urologist I saw just looked stumped. I know if I had had an infection he could have helped but not with something more complicated. I will let you all know Wed. after my appointment.

Sue