Think I May Have Intersticial Cystitis

Discussion in 'Chit Chat' started by Mikie, Aug 23, 2011.

  1. Mikie

    Mikie Moderator

    As y'all may know, something has been making me sick and causing swelling and pain in the pelvic floor. My gyno could find nothing and wanted me to see my urologist and gastroenterologist. I'm fed up with seeing docs and wanted to wait a week after the end of the last course of ABX before seeing the urologist. This doesn't feel like a UTI. My bladder doesn't feel like a lead ball, I'm not having urgency (other than that caused by my BP med) and there is no burning. In fact, even when my bladder is full, there isn't the force when I go that I used to have.

    My daughters have this (it isn't unusual in people with our illnesses). I called one of them and it sure sounds as though this is what I have. The pelvic floor muscles can't relax and make it harder to empty the bladder. That is exactly what it feels like. At least now, my urologist and I will have someplace to start looking.

    Geez, it's always something!

    Love, Mikie
  2. momsherry

    momsherry New Member

    Mikie, I hope you don*t have this. It is horrible pain. It affects your bladdar wall and when you have an attack of it the little hemmorages on your bladdar wall bleed. It is like the worst bladdar infection you have ever had. I got it right after my hyctorectomy and then 10 days later a rectal surgery to take ta tumor off the rectum, thinking it was cancer. Glad it wasn*t. I took lots of DMSO treatments from my uro and took lots of Elmiron for pain. I can*t even by it now, it is so expensive. I had lots of Rectal pain with it so it was a double wammy. I was 42 than and 68 now, that is why I take a pillow with me and keep it in the car cause can*t stand hard chairs. Take care, let me know what you find out, Sherry
  3. Mikie

    Mikie Moderator

    I have heard horrible stories about this condition here. My symptoms are mild by comparison. Both daughters have this. One's went away when she had my grandson and my other daughter's went away on its own. For some, however, it's an ongoing horrible thing to contend with. It can cause such pain in the outer tissues of the area that even wearing underwear is too painful.

    I hope I am wrong about this too but the symptoms do fit. I'll have to see my urologist to find out for sure. I'm in no hurry unless the symptoms get worse. It appears I have Sjogren's, another auto-immune condition, and it comes and goes but it's nowhere nearly as bad as it was. It comes and goes in flares.

    We often acquire new conditions as time goes by. Just when we think we have things under control, BAM! something new comes along. My hugs and prayers for you and my thanks for the response.

    Love, Mikie
  4. rocky76

    rocky76 Member

    ...Maybe drink some again....

    It sure helps me with everything .....
  5. Mikie

    Mikie Moderator

    I just had some colloidal silver. Back in the stone age, they used to use a catheter to fill the bladder with a silver solution for UTI's. I almost never attack a condition with one treatment. My daughter said that, against all recommendations, adding lemon to water helped her.

    I have found colloidal silver helps sooooo many things.

    Love, Mikie
  6. spacee

    spacee Member

    Gee, how awful for you (and me). Especially the ones who have found no relief...this
    is such a miserable, painful condition.

    I know that not all things help I will give what helped me knowing that it may
    well not help you.

    Was have terrible time of it. Got to the point that I couldn't travel because I might have
    an "episode". Started taking the NADH sold here. Never had another bladder problem.
    So, it seems the mannitol in the NADH was the treatment for the bladder. The NADH
    I take to help wake me up in the AM's in the old days. Kept it by my bed to take 30 mins
    before getting up. Really helped. Now that I am 62 doesn't help as much but does some
    and the mannitol helps my bladder.

    You can buy manose online or at a health food store.

    Hope all find something or it goes away on its own!! It's just awful.

  7. Mikie

    Mikie Moderator

    I'll check it out. It is actually a bit better. From what I've read, it can be mild to severe. I drank a glass of milk last night and it really made things better. I think the cup of coffee I drink every morning makes it worse but I don't think I can give it up. I gave up Diet Coke and am still Jonesing for one; it's been hard. I've been avoiding spicy foods.

    I need to make an appt. with the urologist just to make sure it isn't cancer. I know this will involve a scope and I hate them. I've just been through all my routine exams and tests and am not mentally ready to start another round of them.

    My gyno had me get an internal ultrasound to ensure it wasn't anything gynological. The ultrasound tech asked me to empty my bladder and when I tried, I couldn't. When she inserted the wand, she said my bladder was full, in a disgusted voice. The scope was painful as she said she had to move the wand behind the bladder to get to the ovaries and uteris, again in a disgusted voice. My daughter tells me that the pelvic floor muscles spasm and contract with IC and makes it hard to void. Why are so many healthcare people so uncaring? Why do they go into medecine if they have no understanding nor compassion? Why would she think I would not empty my bladder on purpose?

    Thanks again for your help and I hope and pray for all of us who have this. Mine seems to be mild compared to others but I know it can flare up very painfully. My Sjogren's flare has let up (knocking on wood here). It's almost like we have a "flavor of the month" of symptoms and conditions. It's getting hard to keep up.

    Love, Mikie
  8. TwoCatDoctors

    TwoCatDoctors New Member

    I'm so sorry for what you went through. Kindness and compassion from a tech can make it so much easier going through a procedure, especially one that is painful. There is no excuse. That tech needs training to learn to help her patients, and not give them attitude. I hope you are better quickly.
  9. Mikie

    Mikie Moderator

    I appreciate your good wishes. In a couple of days, I'll call the urologist to make an appt. For some reason, I've just not been up to it. I just replaced the flapper and float valve assembly in my toilet. It's such a pain of a job. I'm also having trouble with my bank when I try to pay my bills online. This is the third bank since I originally got my acct. and I think it's something in translation. Another pain! Oh well, these things are minor relatively speaking. I'm just giving thanks that if this is IC, it's not gotten worse (knocking on wood).

    I went downstairs to paint a small drain pipe we had to have installed through an exterior wall next to the sidewalk. Silvester and Tweety heard me and came running over for tummy and snout rubs. I sang to Silvester because I haven't done it for him. I sing tunes with their names and it just makes them melt. Of course, I also scatter some treats for them to chase down and eat. Earlier, Tweety went wild in some mulch and spun around like crazy and ran off with her tail in a high crook. Honestly, they are better than anything on TV. I'm lucky to live in such a nice little village here where we all share and take care of one another. One of our neighbors just lost a grown son and another has lung cancer. We're all praying like crazy for them.

    Again, thanks for your kind thoughts.

    Love, Mikie
  10. spacee

    spacee Member

    to be treated horrible. Yes, my pelvic floor would contract so tight that I would spend
    5 hours in a tub drinking water, taking tylenol with codeine and then it would finally
    relax. They were very predictable 3am- 8 am.

    Cokes and pizza were triggers for me. With the mannitol I can now have that kind
    of food...too bad they are not good for us!! So I try to stay away.

  11. Mikie

    Mikie Moderator

    I'm thinking that my Klonopin helps relax the pelvic muscles when I take it at night. I found that drinking a nice big glass of milk helps too. I love milk and have osteopenia in my hip so guess I'll try to kill two birds with one glass :)

    I've weaned off of Diet Coke because the Aspertame is soooo bad for our brains. So on the rare occasion I do drink soda, it's full on sweetened with sugar. I'm damned if I do and damned if I don't. Usually, I just stay away from soda as fizzy drinks leach the calcium from the bones. I've stayed away from spicy food since this started.

    Yesterday, out of the blue, I got a horrible headache, almost vomited and almost didn't make it to the toilet when diarrhea hit. It felt like food poisoning and I had just eaten lunch. Well, turns out it's likely a virus as I felt as though I had a bit of a chest cold last night. I'm still having some stomach issues but the chest is much better after some Vicks and the heating pad. I've found the heating pad helps relax the muscles in the pelvic area too.

    I need to make that appt. with the urologist but I'm in no hurry. I need some time to recover a bit.

    Love, Mikie
  12. Granniluvsu

    Granniluvsu Well-Known Member

    I thought I might have it also as I had had periods of terrible pain and frequency and sometimes the urinalysis was negative but not all the time. I would also have lots of UTI's .
    Last year due to urinary leaking I had a TVP and A and P repair (having all those kids didn't help. I had also heard that these surgery sometimes help in eliminating or cutting back on the UTI's. I may have had some of both but never did go to the doctor for just the Interstitial Cystitis. If it had continued I would have had to eventially go. I had had it for many years.

    I have A LOT LESS symptoms since the surgery. Don't know if it also has anything at all to do with my FM. You do know that we have lots of weird and different symptoms sometimes.

    They usually say to stay off tomato sauces and products, coffee and other caffinated drinks, and wine too (that I love). I have been drinking it now with know flare ups.

    Hope the doctor will help you take care of your problem. Let us know.

    [This Message was Edited on 08/26/2011]
  13. Mikie

    Mikie Moderator

    Yes, we do have all kinds of issues and most docs never even think about them. My gyno should have immediately thought of IC and suggested the urologist first. He did say to see him and my gasterologist, but IC never entered his mind. Of course, my PCP probably would have as he's a specialist in our illnesses. The only reason I can see to visit the urologist is to ensure that it's not cancer. If I wait a bit and the symptoms get better, it's not cancer. I just don't want to wait too long. That male sportscaster ignored his bladder symptoms and died of cancer. Yikes! Poor guy was middle aged but had a young daughter. Saw it on TV. He was famous in sportscasting but I hadn't heard of him.

    I went to and IC website where I printed out a list of foods to avoid. Everyone has to experiment to see what riles up the IC. One daughter cannot eat graham crackers. Strange.

    I still hurt all over from this virus and have a horrible headache. Stomach is a bit better. I'm supposed to go to the nursing home for a birthday celebration for my Mom's best friend. I've not been able to visit her for so long and I know she's lonesome. I will go even if I can't stay long. I don't think I'm contageous at this point. My grandson up in Atlanta has had the virus as has his friends. Good thing is that it doesn't last long.

    Thanks for your good wishes. I'm glad the surgery helped you. One daughter's symptoms improved so much after my grandson was born. Again, how strange are we?

    Love, Mikie
  14. Mikie

    Mikie Moderator

    That's interesting about smelling things. The IC symptoms are in remission, thank God. Mine seems, so far, to be a moderate case. Some suffer horribly with IC.

    I've had that virus and thought it was gone until it hit again yesterday afternoon. According to my daughter, that is how it behaves. My grandson is about a week ahead of me with the virus.

    Love, Mikie