Had cytoscope done...definetly IC,

Discussion in 'Fibromyalgia Main Forum' started by Sandyz, Feb 23, 2006.

  1. Sandyz

    Sandyz New Member

    I had my cytoscope done a couple of days ago. My doctor said the Ic was easy to spot and medium bad. I didn`t get to talk to him long but will see him in his office in a few weeks.

    I am so sore the last few days. It started in my lower back and now moved up my whole back. Everything is very tight and it hurts to walk because of my back. Did any one else get so sore after the scope? My bladder doesn`t hurt much though so that`s good.

    I`m very overwhelmed having another big thing to deal with. I just feel like, how much more can my poor body take. I found a couple of IC support sites I really like. THe doctor put my on just the elmiron for now. I got some Prelief and I`m making diet changes. Does this every go away? It sounds like it can go into remission but you have it the rest of your life.

    IC suffers, I would appreciate any wise word you have for me.

    Sandy

  2. pawprints

    pawprints New Member

    I feel the same way having another thing to deal with. It is my experience that diet and some medicines,like Elavil and Atarax and Elmiron can help. I have to watch my diet very carefully. You can also talk to your doctor about bladder fills with Heparin.

    I think it goes through periods of remission and then can come back. Sometimes just the surgery can put it into remission...so I will keep my fingers crossed for you.

    There are many on this board who also have IC, so I am sure you will be getting responses. Some are in total remission.

    Please let us know how are you doing with it. If you want to meet in the chat room in the next few weeks let me know.

    The Elmiron can take awhile to work. I am still not up to the full dose of 3 pills yet.

    Wishing you the best,
    Shana
    [This Message was Edited on 02/24/2006]
  3. LISALOO

    LISALOO New Member

    It can go into remission, mine is, it took about 2 years to get it there. It wasn't easy! I definately hurt worse the first week after the hydrodistention, scope. I know many other people, including a family member that gave me help, who are also in remission. Definately do the diet changes.

    Make sure your magnesium intake is good. Prelief is calcium and can make constipation worse. Thus making pain worse.

    I learned some pelvic stretches, really helped my bladder! Pain in the bladder causes pain in the muscles around the bladder.


    Also, I tried making baking soda capsules that i took each morning, really helped! I couldn't stand the taste of baking soda water after a week. The capsules helped alkalize the bladder.

    I was so negative when I first got IC. The doctor told me there was no way I was going to get married because I couldn't have sex. Showed him! Got married 1 year later, still couldn't really have sex that much. So find a good doctor.

    There are some really good cutting edge ones. I found one who specialized in IC, and sent me to biofeedback, relaxation classes, physical therapy. I found the best way was the holistic way though.
  4. EllenComstock

    EllenComstock New Member

    I've suffered with IC for years so I know what you are going through. Yes, the cytoscope procedure is not fun to go through. So glad you have bought some Prelief. I wish someone had told me about this product years ago. I would have saved a lot of suffering and sleepless night for me.

    A urologist at the Cleveland Clinic gave me some Prelief samples to try. My IC is 80% better with this product, but I have to take it faithfully. In experimenting, I have discovered that I need to take more-three or four tablets per meal (depending on what I'm having). Just remember to take the Prelief when you are having a drink that could irritate your bladder like cardonated drinks, tea, fruit juices, etc.

    For the most part, I have been able to resume a normal diet, although I wouldn't do something like drink several glass of orange juice in one day.

    I occasionally have a flare-up, especially when my FMS flares up. If I'm under a lot of stress, then my IC will flare up then, too. I have managed to eliminate some of the stress in my life and to slow down somewhat. It all helps.

    Good luck.

    Ellen
  5. pawprints

    pawprints New Member

    I knew you would chime in to help out.

    If you read this, my question is did you do the alkaline diet with juicing or just the elimination diet?

    Any details would be helpful about your diet changes.
  6. Sandyz

    Sandyz New Member

    You are all lifing my spirits already. What side effects did you have from the elmiron. It sounds like some people can`t take the full 3 times a day right away. Why is that? I read on one of the previous posts, hair loss can be a symptom. I`m a little nervous about that one because I have been having some hair loss before all this.

    I`m hopeful that the bladder distention may have helped me because I have alot less pain in my pelvic region and bladder. I can wait longer to go to the bathroom. So, that`s all a good sign.

    I think I`m just exhausted. I just had 3 long monthes of hell before I finally got into a urologist and got diagnosed. I was in a lot of pain and my doctor wasn`t helping. I just got dismissed again because I have Fm. I need a new doctor, I can`t handle this ones indifference any longer.

    Anyway, your advice and encouragement means the world to me.
    Sandy
  7. LISALOO

    LISALOO New Member

    Sandyz -

    Elmiron did make me loose hair, so I quit after 4 months. However, it grows back soon as you stop taking it. I know several other people who had this problem. But I would definately give it a try. It's the only real thing out there to help rebuild the inside bladder layer. OF course now I still get streaks where my hair falls out a lot, but I blame that on CFS.
    [This Message was Edited on 02/24/2006]
  8. LISALOO

    LISALOO New Member

    Pawprints - I did a straight alkaline diet. I didn't notice results for a couple of months.

    I tried an elimination diet but it didn't really help. I would have delayed allergies to a lot of things, so it was hard to say, oh, I was allergic to this from today or maybe it was from this two days ago.

    I didn't juice. I stayed away from all fruit. I tried Prelief with fruits and other acid stuff, but still some acid gets through so I figured I would never get it into remission unless I completely quit all acids. Besides not feeling like I have to go to the bathroom every minute is a godsend! That was the worse.

    I don't have a juicer and I shudder at the thought of juiced veggies!!! I've never been a breakfast person either. It was hard enough replacing all the carbs and sugar that I ate 24/7 with real veggies!

    If only I could stop my CFS from getting worse!!! It's weird because so much of the advice for CFS and IC is the same. At least my IC plateued after a year and stopped getting worse.

    I did have some twinges this week, nothing big at all, too much extra big doses of Vit B. Slowed down and now I'm great again!
  9. pawprints

    pawprints New Member

    for eating all those veggies. I am trying a combination of both diets.

    At least you know your diet is healthy and so the CFS must be coming from somewhere else. Hang in there. I know you are trying to get to the root cause.

    It is tough dealing with both the IC and CFS at the same time.
  10. LISALOO

    LISALOO New Member

    Thank you, I hope you get better too, I hate having diseases that people say you will never get better. I just want people to hope that they can get over IC. I hope your diet works for you. I don't eat as much veggies now as I should!
  11. tandy

    tandy New Member



    Sorry to jump in with questions but,.....

    I've suspected for over a yr that I may have IC.

    This test that shows the bladder sores/or inflamation
    cystoscope/distention.(sp?)
    When and if I ever get this done to DX me,...
    Is this a hospital procedure?
    are you put to sleep for it?

    (I'd like to be) :)

    Thanks for helping~

    and Sandy~ I'm glad you at least KNOW whats causing all your pelvic/bladder pain & symptoms.

    Half the battle is the worry of "what the hells going on now?" I strongly feel that people with Fibro,and or CF have enough on their plates!
    Having 2 or more conditions is a nightmare!

    They do seem to feed on each other too.
    One flares up the other. (don't ya think?)

    feel better :)
    Tandy
  12. tandy

    tandy New Member

    one time.
  13. Cromwell

    Cromwell New Member

    Just found your post. I have had IC flares a lot. I get it too with intercourse. My urologist has a special one off pill you take before and after that is protective(yet antibiotic) as I am not a rabbit!!!!! this works often for me. I think I got this last IC due to having a gyne! Drink lots of bottled water.

    Love Anne C