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IC or not - any ideas?

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  • Mothergoose
    replied
    Kegals are a no no for sure, they can make you worse.

    MG

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  • newz
    replied
    Thanks MG! I've been reading loads tonight about PFD and wonder if that is what I have as my bladder problems all started after a uti. I always feel worse a few mins after urination so maybe it's linked to that. Even though she said my flow test was normal today I do feel like the rate isn't anywhere near as fast or strong as it used to be. I asked the urology nurse today about PFD but she'd only heard of weak pelvic floor muscles after child birth etc which is definitely not my problem. I've never heard of any physical therapists who treat tense pelvic floor muscles here in the UK, in fact I think it's unheard of. I think I might try the warm baths twice a day for a while, does anyone know of any exercises which relax the muscles as everything I've read is linked to kegels and strengthening your muscles?

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  • Mothergoose
    replied
    Good to hear your results were good.

    MG

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  • ICNDonna
    replied
    You can find a printable diet list at the link in my signature below.

    Warm hugs,
    Donna

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  • newz
    replied
    Well just back from my apt with the urology nurse having donw the flow test the results of which were normal. She also checked that my bladder was empty after the test and it was which is good news. We had a good chat and she looked at my input/output records I'd been asked to keep over the last few days and she told me that I need to make sure I'm going to the toilet regularly to make sure the bladder doesn't get too full, 500 ml according to her is the maximum you should have in your bladder so I thought that was interesting.

    We also chatted about IC and she said you can have it even though your cystoscopy didn't show any bleeding/ulcers etc and suggested I try the diet which she will forward to me, so will give that a go.

    I just feel because I've so much going on at the minute with gynae/bladder problems it's hard to work out what's going on but at least the results today were encouraging.

    Thanks for all your replies ladies, it's great to know I'm not on my own as I often feel very frustrated and family/friends find it hard to really understand.

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  • Mothergoose
    replied
    let us know after your test how it goes.

    MG

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  • newz
    replied
    MG thank you for such detailed info, lots to think about! Well I started the postrap injections for the endo today so only time will tell if they help with the pain/pressure feeling. I'm booked in for a urology flow test tomorrow so will see how that goes as well.

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  • Mothergoose
    replied
    To BRi1121 and Newz

    I have said before I know now I have had IC forever, and various symptoms of it, but I was always told it was one thing or another such as: ovarian cysts, which some of the symptoms were, this went away after menopause.(recently, I have fought cysts for for 30 years on and off)

    I was told edo which it turned out not to be. Then I was told it was the nerves leading to uterus and had then severed which didn't help.

    Then I was told Adenomyosis, which some of the symptoms were, these improved after a hysto. (Which as a side note my gyno said I know a hysto will help you with a lot of your symptoms that I you really need for the ando, but I am not too sure it will help with all of your symptoms and pain, he was right)

    Then I was told my back from bulging disc's and arthritis impeding the nerves to the bladder, possibly MS. MS was ruled out, but some of the problems could still be from my back, for sure any bladder or bowel problems makes my back soarer.

    Then once everything else was ruled out they started to look at my bladder even though I had been complaining about bladder/kidney symptoms for ever. I had lots various tests, spent time in the hospital and had a few minor day surgeries. I was told kidney stones, but for some reason they couldn't see them (a rare kind you know). I probably did have stones too as I did catch some, but the lab lost them before they were tested to see what kind they were. I got them every couple of weeks for a few years, which included lots of pain and with them UTI's that never went away.

    During this time I saw many uros who weren't able to diagnose me, till one day I had an ultrasound where I was given the wrong instructions about drinking and holding the water,( I was told to drink double the amount and to hold 2x's as long, I was crying by the time I got in for the test, live and learn if it doesn't sound right question it.

    From this they discovered my bladder held way to much urine (not a very common feature of IC, but also doesn't rule out IC), and that I had retention because when they wanted me to pee out some of the urine so they could see my ovaries I could not pee, they drained a bit of the urine off with a cath, and then after that I could pee but only in small amounts so I had a good ultrasound tech, I have been seeing her over 18 years now. So even though not ordered she would get me to pee and then measure how much I had gone and how much I had left.

    This led my uros down a different path and many more tests. Some of the tests I had were a cat scan wit dye which showed a thickening of the bladder wall, I was told at the time that was an indication of IC but one else has ever said this to me, but I don't think it is a common test done for IC. I had an MRI so see if I had structural problems, I didn't, although it was decided i should have my urethra stretched anyways, (won't agree to do this again).

    I had a uro dynamics test which showed the muscle in my bladder doesn't contract and the fuller I get the less it contracts. Hence a diagnoses of urinary retention, but what to do about it. The uro I was seeing at the time wanted to try things she had read about but not actually done herself, she couldn't answer basic questions such as expected outcomes, recover times, what it would do to IC if I had it as well, etc so I did not do what she wanted and found uro # many.

    I finally found a uro who listened to all I had tried, to what I have been told, etc. He asked if he could do another Cysto my 4th in less than a year, a hydro, biopsies and a DMSO treatment. i agreed figured what have I got to loose right.

    From this I was finally given a for sure diagnoses of IC and urinary retention.
    1.This uro told me a few things: he felt part of the retention was from untreated bladder pain and spasms.
    2. I had had IC for a long time, he could see that.
    3. The other uros he felt didn't see the IC because my bladder capacity is way bigger than a normal bladder or a normal IC bladder, so he figure once they had expanded my bladder as much as they usually did they stopped filling, so could not see the signs of IC.
    4. He was not too sure what to about the retention as I am allergic to the alpha blockers used for retention eg. Flowmax, and I had very low immunity so was not in favor of home cathing due to too much of an increased risk of infection.
    5. He felt what helped most people with IC the most was diet, not that he wouldn't use medications, just he felt diet was really important.

    At this point I had already been on the diet for a few years as my GP figured out IC long before any uro, but he wanted confirmation of IC from a Uro.

    I know this has gotten very long winded, but my point is, lots of us have traveled down a very long path to diagnose.

    I really hope you in fact that you do not have IC, I wouldn't wish this on my worst enemy, but I also don't want you to get your hopes up too high that it is not IC, just take it one day at a time. Diagnose is not always a clear cut thing, as it is often done by process of elimination, which can take a long time sometimes.

    My status now is my IC is pretty good and I do attribute most of it to the IC diet, maybe I was brain washed, but I am not able to take Elmiron and the alternatives that I have tried I am allergic too, I have many allergies.

    My retention is getting worse and is to the point it needs to be re asset, but my uro just closed his practice due to health issues, so I am in the process of finding another Uro who knows about IC and related problems.

    You have something going on both of you and you do need to pursue it till you get answers. I truly hope they figure out what is causing your problems ASAP.

    MG

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  • newz
    replied
    [QUOTE=bri1121;580828]

    How did you discover your endo?

    QUOTE]

    I've had period and ovulation pain for a long time and my gp had referred me to gynae, at first I wasn't too keen to look into it as I felt it was just 'normal' cramps but as time went on they got progressively worse so I went for the gynae apt and he wanted to do a laparoscopy. So I had that done in March and the consul felt I'm suffering from both endo and a chronic pelvic infection as my ovaries were enlarged and the tubes were stuck to them, what he referred to as a frozen pelvis. I'm starting injections this week for the endo which will bring on an artificial menopause for the next 6 months to see if things in the pelvis settle down. I'm not looking forward to them as he warned me I may feel worse before I feel any better!

    So yes I would def agree you should follow up with the gynae, I'm so glad I did now! I had an ultrasound and it did show up a follicular cyst which he said is pretty common and will disappear after a few cycles so nothing to worry about. The endo however won't show up on an ultrasound, the only way to really determine if it's present is by a laparoscopy which actually wasn't too bad.

    Hopefully your bladder and kidney ultrasound results will come back shortly!

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  • bri1121
    replied
    I never felt better after being treated for the suspected UTI. I do feel pressure in the pelvic area right above the pubic bone. I remember after sitting for a long time I had such bad pain I thought something was going to fall out. I thought at this time it might be a pelvic floor issue. But it has not got that bad again.

    How did you discover your endo?

    I did go to the gyno because I was having pain near where I thought my right ovary would be. It felt like a cyst- I had a small one that went away about 7 years ago and that it what it felt like. She did an exam and said everything felt normal. When she did a urine test there were white blood cells and thought that I had an infection and that what was causing my pain.
    She put me on macrobid and I took it. And for the first 2 days on it I thought I was feeling better but then after the third day everything was back.

    I feel like I should find another gyno because I am still having pain where I think my ovary to be and its obvious I do not have an infection. I would like to have an ultrasound of that area to rule out cysts or tumors. Even though she said she didn't feel anything.

    My urologist didn't mention cysto yet. He seems to think at one point I did have an UTI and my bladder is just irritated. I am not too sure that is it. Still waiting for the ultrasound results from the bladder and kidney!!

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  • newz
    replied
    Ahh BRi1121 I really feel for you too it's awful isn't it! I honestly don't think mine is IC but of course I could be wrong. I still feel it's more likely to be related to the endo or pelvic infection that I've had, even though I've had 4 courses of antibiotics I don't feel like the infection has cleared up but I have to wait 2 more weeks before my apt to see anout it.

    Mine definitely started with the Gp B Strep uti but the symptoms settled then came back etc this went on for 6 months until my next uti when the symptoms never really went away.

    Do you have a feeling of pressure in the pelvis/bladder area? It's hard to be sure where it's coming from and have you been tested for any gynae problems?

    Is your urologist going to do a cystoscopy to look inside the bladder? It's all so frustrating when you just can't get any relief, anyhow keep in touch and maybe between us we can get to the bottom of it all.

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  • bri1121
    replied
    I am going through a very similar situation. In October I started having issues. I felt pain in my bladder when I would have to go. It would be relieved after but then sometimes I would have a burning feeling after I peed. I would wake once at night to have to go because my bladder was painful. Sometimes I would go a lot and sometimes not.

    Anyway I went to my GP and they did an urinalysis and it came back negative in the office but was sent out and grew back strep b. I was put on antibiotics but I never felt better. I saw a few doctors and kept going on different antibiotics. Finally saw a urologist and he didnt think this strep would cause a UTI and said it was a skin infection? I don't know, but maybe I never even had a UTI. Can't imagine what these antibiotics have been doing to me.

    Anyway I did a clean catch urine sample and it was clean - negative for all bacteria. I just just had an ultrasound done of my bladder and kidneys. Waiting for the results.

    As you said I feel better when I dont drink a lot during the day, I believe since my bladder is not filling up. I have good days and bad.

    My doctor put me on toviaz but to me that made things worse and I stopped taking it.

    I don't know what to think!!

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  • Mothergoose
    replied
    These symtoms still go with urinary retention, I would at least ask to be asset for it.

    If you do have retention and they didn't know it the samething could have happened to you they may not have filled your bladder enough for IC to show up.

    Just my thoughts MG

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  • newz
    replied
    Thanks everyone, just up and have used the toilet and bang the urinary symptoms are back with avengence. It's funny how I can sleep and it doesn't bother me at night, thankfully!

    My cysto was done under a ga where the bladder was filled, I also had urethral dilation at the same time. The consul feels it's very unlikely to be IC as the bladder appeared fine and as there's gynae stuff going on as well he's more inclined to think it's gynar related.

    I've read a lot about Elmiron on these forums but I'm not sure if it's available in the UK as that's where I'm from.

    Another thing I've noticed is if I drink a lot less than normal during the day then my symptoms are much better, in other words the more I drink the worse I feel but i know it's not good to get dehydrated and don't want to risk getting another uti, does anyone else experience this?

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  • Mothergoose
    replied
    This does sound like IC symptoms but it also sounds like urinary retention symptoms.

    Having said that my 1st UTI years before diagnoses with IC took 6 mons to be painfree from, it probably was IC then, but I had no idea nor did my Dr.

    Your cysto you didn't say in office with or with out anesthetic, with hydro.

    I had 3 or more cystos in a year all done while awake and I was told my bladder looked fine, I then had one while asleep, and the uro said for sure I had IC that the previous cysto's, my bladder had not been distended enough to show IC, I have urinary retention and my bladder is much larger than most people with IC, so they would put enough fluid in for a normal IC bladder, but this was no where near enough for it to show up in my bladder, once my bladder was fully distended it clearly showed the typical IC signs, bleeding hemorrhages etc.

    I know it is hard but as other have told you your Dr. sounds he is on track, it just takes a lot of time.

    MG

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