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How to find a doctor who actually knows about IC?

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  • How to find a doctor who actually knows about IC?

    Hi all!

    First of all, I apologize for using not the correct words in some place, english is not my mother tongue and with medicinal terms I may have to rephrase.

    soo I've been struggling with "Bladder issues" for around 8 years now. But no doctor has ever had the idea of saying it could be IC.
    I think I ´kinda caused this myself by anxiety or something.
    I remember as a little child in kindergarten I was scared of the toilets. Something must have happened, I don't know what, but I just could not go there. I would hold it in for a whole day, and walk in circles to not have so much pain.

    During my whole childhood and youth, I had trouble with public toilets. I would have to go very much, but once in the bathroom be so scared that I couldnt do one drop.
    When I was older and taller, I learned to "hover" and then it was better, and in most situations I could go. However, as you may know, when "hovering" you don't let go of muscles, you have to press it out instead... Even once when on a public toilet my mother remarked that me peeing sounds weird, like, way too weak, not a stream like other people.
    When I was approx 20 I worked in a place that was heated for men in suits (constant 20°C no matter what weather) but I was required to wear dressy blouses (I actually got called out once when I wore a woolen overshirt)... So that year I had several UTIs and it kept coming back.

    And ever since I have sometimes flare-ups where I cramp at night, have to go super urgently but only a drop comes out, and can't sleep because it constantly feels like I have to go.
    During regular times, I only have to go around 1-2 times during the night. But, if I wake up from whatever, I always have to go... means nights in a hotel or etc are usually less sleep.
    My bladder feels okay when 100% empty. When I sit, it still feels okay for quite a while. But when I lie down, it feels like even 5% kinda hurts. When it's full-ish, it hurts or feels very unsettling. When full-ish and movement occurs or I lie down, it hurts more. So I believe that for some reason, the side walls of the bladder must be be most sensitive. Is that possible?
    Flare-ups are caused by either stress (anxiety about something on the next day, usually), or sitting cold. Even plastic chairs without cushions in summer weather can be the cause.
    The round-trip of doom is: anxiety about a long bus ride (there's usually no toilet available, will I be able to hold out long enough), makes the issues worse...

    UTI tests at doctors sometimes came back positive and in other times negative so it never really made sense.

    3 years ago my gyno found a cyst between the vaginal canal and the urinary canal. He said it could be connected to the urinary canal and thus causing infections. Now suddenly that seemed to make a lot of sense! So I went to the hospital he recommended to me. They did an MRI and told me they will operate it out, and I will get a cathether coming in through the belly, for 30 days. And I couldnt stay overnight, so I would have to travel home with the train for 2 hours on the same day... yeaah no.
    So I went to another hospital close enough to my parents place so they could drive me.

    That hospital said they can lay a cathether along the urinary tract, only for 3 days and that will actually stabilize healing. That sounded reasonable in comparison so I agreed.
    When I woke up I was told, they made a cut in the very beginning of the vaginal tract, but could not find the cyst at first, and then they discovered that it was too close to the muscle to operate so they couldnt take it out. The recovery was horrible - they had put a LOT of gauze into my vagina that was pressing on my bladder. When that was out, I felt much better at first. But then the cathether came out on the second day and they told me to go pee on my own. But everything was still swollen down there and nothing was coming out, I felt like I was about to burst. They said it has to come out. Then I pressed super hard, it hurt super bad, and it was dribbling... I remember I had super sore muscles afterwards. They sent me home, but even at home I sat on the toilet struggling to get something out but in pain cause it felt so full... The whole thing was quite traumatizing.

    For the year after that all symptoms were worse plus due to the cut in the vagina I also hurt when having sex or inserting anything actually. That did get better, but still I can't really use tampons anymore.

    Some weeks after the operation they did some inspection with sending a tiny camera along my urethra. They discovered that there was nothing going off of the main tunnel and also said that the bladder wall looked okay, and thats it. I didnt get an answer when I asked why they didnt do this inspection before the operation... I also asked what can we do now. Doctor said nothing to be done. But also had no idea what to do about my issues. He did say I have 3 kidneys, and that may be why stuff I drink ends up in the bladder quite fast and sudden. Interesting to know, but not really any help now.

    After that experience I was quite wary about going to doctors... regular gyno visits because of BC, also mentioned bladder issues, they just nod and dont want to discuss. Once I had an actual UTI and went to the general doctor, got antibiotics, told them about my issues, but got no help or hints.

    What I should add: During the time the operation happened, I was privately insured - that means here, a lot of money to be earned for doctors. Very much interest in treating a patient to an operation. Later on, I was state insured. That is way less money. Like, they can only ask 1/3 of the money they could ask a privately insured person. That's why they aren't interested in helping, just want to get the regular appointment done.

    I know my triggers and rules now (never sit cold, drink much between morning and afternoon and not more than one cup in the evening, no coffee and careful about tea, plan long bus or car rides in the morning and then dont drink before, ... ) so life is pretty okay.
    During Covid working from home phase everything is pretty fine health-wise. No bus rides, no sitting cold, always the comfy home bathroom.

    In another Forum someone mentioned "bladder issues" and "IC" so I went googling.. and ended up here. And now I'm wondering whether I should give doctors a try again. My symptoms, and even finding about what makes it worse, do fit to what I could find here.

    At some point, there will be travelling, public bathrooms, nights out, and stuff, again. And I would love to be able to enjoy that without being stressed about finding a bathroom on time. I would also love to sleep through a whole night again.
    Last edited by Lillia; 01-18-2022, 09:43 AM.

  • #2
    I feel sad now...
    I was quite hopeful to have found this ressource, but everything, from the doctor finder to the supplements & medication recommendations, targets only the US.

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