I have IC

[meg31]

Hi everyone.

I posted a while ago because my urologist suspected IC. I had my cysto/hydro done yesterday and she confirmed it. The pictures were scarey- multiple tears in the bladder lining with big, red, raw areas and glomerulations. At the hospital, I was a bit loopy while she was talking but on the way home I think it all kicked in and I cried the whole way home in the car. One part of me was saying "I told you so" to all those people who thought the pain was in my head (pictures don't lie!). But another part of me was so angry and mad. I've been such a healthy person my whole life. Never smoked, never been on any meds, health nut, exercise all the time, why did I deserve this? Could I have prevented it somehow?

I'm in a lot of pain now and am on Tylenol w/Codine and Pyridium which don't seem to be doing the trick. I have heard that some people get better after the hydro for a while. How long does it take so start feeling better? Because right now I feel 100 times worse!

Also, my uro wants me to start Elmiron. I've heard the horror stories about this drug and didn't get the perscription filled out of fear. I wanted to get a second opinion first. But I know it takes months to have an effect so maybe I should get started on it? I don't know what to do...

Finally, has anyone experienced an INSANE amount of urination after their hydro? I mean, I pee a lot as it is but I've been measuring my urine output and I've peed more than a liter of water in the past couple of hours. Maybe it's from the IV or the drugs? It's been 24 hours since the procedure.

Thanks in advance for any help you can give me. I take some comfort in knowing there are people here who understand and care.

-Meg

[Kara Isabel]

Hi Meg!

First of all, I'm really sorry you got the diagnosis, but atleast now you know which path to head down in hopes of healing. AND you will get better. Diet being CRUCIAL for most of us in controlling IC flares.

I wasn't diagnosed by hydro, so I cant answer your question there.....I was diagnosed by the potassium test! UGH> lots of pain afterwards for a few weeks but it will get better.

I, too, sat on my prescription of Elmiron for a few weeks, I was scared to take it as well....I was worried my hair would fall out and I was pretty leary of meds anyways because I think accutane is what caused my IC, but that's a whole other story.....but I did end up taking it for about 6 months and had to discontinue due to constant heartburn and diarrhea (it was wearing me down) HOWEVER, no problems with my hair whatsoever.....in fact, it seemed to grow MORE while I was taking it, go figure.

I hope you give it a shot to see if it helps, some people really benefit greatly from it. Meantime, start the IC diet and find some bladder friendly foods and drinks. Stay away from alcohol, caffienated drinks and sodas, and acidic foods and you should start feeling better. It seems overwhelming at first, I know, but it does get better and easier to live with IC.

hugs,
Kara

[Claredale]

I was diag with the hydro but it was so many years ago. I remember the pain well, and the urge to pee but still couldn't that was when I went down the deep end. I has also had the potassium test by another doctor and man I was ready to pull his hair out. It was a total surprise, I guess that is how it is supposed to be. I used the Elmiron. I didn't see any improvement, and I did have the hairloss problem, but I don't know if it was just due to the Elmiron. My dermatologist said that since I have had chronic pain for so many years that could be a factor as we. I wear a wig now and I have grown fond of it. Due to some meds from my doctor, I am slowly growing some back. I lost about a third of my hair in the back of my head.

I would try the Elmiron and definitely work with the IC diet. Are you getting much sleep?

I really to get you down, but even with the pictures, diagnosis and all there are still going to be those people that say that it's in your head. I know, I have had bladder problems since I was 23 and since I have normal days, the days that I have pain or having freq/urgency, it is at my convenience. You will also have those people that really care, so hang on to them for your support and don't spend your energy trying to make people understand that just don't get it. It took me (and I am still working on it) to realize that.

[Sarojini]

As for the peeing, you probably had IV fluids when you were in the hospital, since you're not supposed to eat. They push you full of fluid so you don't dehydrate during the induction of anesthesia, which would be dangerous. So, yeah, I also peed a huge amount and very frequently after my hydro, as I had the same thing happen.

I have been on Elmiron for a long time; I think it helps my frequency (usually) but not pain. I will tell you though that I have had NO side effects from it -- no hair falling out, no digestive probs, nothing.

Now that you have photos, try and ignore those who say it's in your head. The pics will change many people's minds, but there will always be the few and the jerky if you know what I mean. Ugh.

[meg31]

Thanks Kara for the response. I know people have had different reactions to Elmiron so I think I'm just going to have to suck it up and try it. Otherwise I'll never know if it could have helped me. I am hesitant to try meds because I think my IC was caused by a drug too! I started having symptoms out of the blue after taking a new birth control pill and haven't been the same since. In the past few months I have lost over 15 pounds (I'm already a small person) and have just gotten back to a normal weight recently. I'm afraid the Elmiron and IC diet are going to make me feel and look sickly again!

[meg31]

Thank you all for the support. Sitting here trying to deal with the pain is so much easier reading your posts. I know there are people out there that won't believe I have a real problem but so far the people that are most important to me in life have been very supportive so I'm thankful for that. Hopefully in my next post I will be feeling better. Thanks again!

-Meg

[VickiB]

I'm glad the people who are closest to you are supportive, -that makes such a difference! I bet most of us have asked that question of what we did to deserve this! I know I did! Shoot, I'd always been healthy and put a lot of effort into staying that way. Then you look at others who seem to abuse their bodies at every opportunity and they're healthy as horses! What gives? I've decided that IC simply must have been in the cards for me, then try my best to be thankful that I haven't been dealt cancer instead!

Add me to the list of those who held that Elmiron prescription for a while before filling it. I don't like pills. Very dangerous things -taking pills! (God, I'm quoting Jack Nicholson!) But that's exactly how I felt! Eventually, I decided that my life was in the toilet anyhow so I didn't have a whole lot to lose. Maybe a whole lot to gain. I filled my Elmiron, had no side effects, and am doing so much better today than two years ago. Still, some do experience side-effects, so this is one of those questions you'll have to weigh for yourself. It does sound like you're considering all sides of the issue, and that's great!

Vicki

[sami4a]

My Gynos office has about 150 women on Elmiron and not one of them has had a single side effect. As medications go Elmiron is very safe and for those it helps, it can be miraculous. Give it a try. If you have side effects and cant stand it, stop taking it. Hair grows back, digestive upsets stop, what have you got to lose? You may be one of those who just thrives on it and gets your life back?
I have been on Elmiron three times a day for about 3 and half months and I feel it has helped a great deal with pressure, frequency, pain. I have had no side effects. Some people complain about digestive upset with the capsule, then just open them up and put them in a little water and drink it.
Elavil also helped me a lot with pain and bladder spasms. The sooner you get treated, the sooner you will feel better.
IC usually dosent progress beyond the presenting symptoms if treated then.
Also remember that a lot of people with IC under control are not posting on the boards. People have a tendency to post when they are in bad shape or severe pain.
Give the treatment a try, you may feel better by christmas.
Sammie

[Freckles]

I'm so sorry to hear you do have IC. I think one of the hardest things for me to deal with has been people not believing I'm as sick as I am. I'm not working now and I know people look at me funny. I was conveniently layed off at my last job because of all my breaks and bathroom visits. I haven't gone back to work because I am just now realizing that I can't sit at a desk for 8 hours, it's just torture for me. The doctors and getting help is hard as well. I don't have anyone to go to the appts with me. I hope you have a husband, boyfriend that can go to your appts and help you. Doctors seem to help more if there is a male figure with you.

I did try the elmiron for months and although it did not help me it didn't hurt me either. I had no side effects. I was told to take it even if I couldn't feel any difference because it was still helping rebuild my bladder. I haven't taken it in a few weeks because I've just been concentrating on getting over the pain. I've been really bad lately but I'm divorcing so I'm sure the stress is making me worse.

I also tried the diet years ago and have found that really the only things that bother me are citrus and red wine. They both kill me.

Really IC is a disease with so many different symptoms. It's different for everyone. You absolutely should try the elmiron because you may be one of the ones it helps. Also try the diet then you'll know what foods make you worse. I make sure when I know I'm going to drink wine (which isn't often) that I drink a lot of water for a couple of days before and after and take prelief a lot too. That seems to help a bit.

I'm doing home instillations now as well and they help a lot. I have not done one lately because the catheters hurt me so much. Also I have an asshole for a doctor and he wouldn't give me smaller ones, so I have to go on a search to find a way to get smaller catheters before I can do any more instillations.

Finding out you have IC is scary, but a lot of women get tremendous relief from the medications. Try not to be anxious about it, because that will make your symptoms worse. Try to stay calm. My doctor also gave me valium, and I take that when I am in a lot of pain and get really scared.

We all are here for you so I hope that helps. We all will help you any way we can.
Karen

[melanie626]

Just take a deep breath and realize that this disease is infortunatly a disease of trial and error, a patchwork of what works for differnet people, but give it a try.

Freckles- What size cath do you use? Why won't your uro give you a smaller cath? What an ass! I use 8fr red rubber and find they are really nice, but I have been using the same six for the year.

Good luck

[Freckles]

Hey Melanie,
My doctor prescribed size 14 french I think it's called. They are red rubber. They hurt so bad I can't even do my instillations. I called him and he said "I could stick two of those up you". He is an asshole. I will probably go in search of yet another doctor. I am in the process of writing him a letter.

In a nutshell this is the problem. At my last three or four visits he has been trying to get me to have the interstim implanted. I have refused. I have done a lot of research and found that this helps with frequency but not pain. I do have frequency but that is not my main symptom. My main symptom is pain. He wants to make some money off of me and he's not. He's made it more than obvious that he doesn't want me to come back to his office. I won't. I will however let everyone here that is interested know his name if they will private message me. He is a doctor in Tampa Florida. I don't want anyone to go see him, he's a monster. So, now I'm in search of yet another doctor and smaller catheters so I can get some relief from my instillations.

[melanie626]

I get the interstim thing, whole long story but i know what you are dealing with first hand.

Look at the Lo Fric Catheter site and see if thosw work for you (I think they are 10 fr). Otherwise, find another MD and in the meantime your primary may be able to order you some 8 or 10 fr catheters to use. You old MD sounds like an ass.

Sorry:(

[Margo3]

Hi Meg!

First of all, I'm really sorry you got the diagnosis, but atleast now you know which path to head down in hopes of healing. AND you will get better. Diet being CRUCIAL for most of us in controlling IC flares.

I wasn't diagnosed by hydro, so I cant answer your question there.....I was diagnosed by the potassium test! UGH> lots of pain afterwards for a few weeks but it will get better.

I, too, sat on my prescription of Elmiron for a few weeks, I was scared to take it as well....I was worried my hair would fall out and I was pretty leary of meds anyways because I think accutane is what caused my IC, but that's a whole other story.....but I did end up taking it for about 6 months and had to discontinue due to constant heartburn and diarrhea (it was wearing me down) HOWEVER, no problems with my hair whatsoever.....in fact, it seemed to grow MORE while I was taking it, go figure.

I hope you give it a shot to see if it helps, some people really benefit greatly from it. Meantime, start the IC diet and find some bladder friendly foods and drinks. Stay away from alcohol, caffienated drinks and sodas, and acidic foods and you should start feeling better. It seems overwhelming at first, I know, but it does get better and easier to live with IC.

hugs,
Kara
:cat: I have IC too. I am accepting it better. I have alot of pain.
I was wondering from Kara Isabel when you started to feeling better?
I have been taking the Elmiron now for 2 months. I didn't want to take it
also, for the hair loss. I haven't lost hair yet.
Love:) Margo3

[meg31]

Thanks to all of you for your welcome again. This network has been my lifeline during this waiting process of figuring out what to do next. I have started feeling a bit better after my cysto/hydro and have set up a treatment plan for myself that I keep a journal of. Since bacterial infections seem to be non-stop for me (actual cultures of enterococcus), my doc is giving me long term antibiotics and suggests that killing the bacteria along with taking the elmiron to heal my lining may help. I'm also taking aloe vera gel in the morning (it's soothing and is a slight diuretic so it gets rid of that retained water in my abdomen), drinking marshmallow root tea, and taking anxiety meds. For the first time since July I think I feel like I might be moving forward instead of backward. Thanks for all the kind words and I hope to be posting on the success stories page soon.

You guys are great!
-Meg