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  • My success story: hopefully can be helpful for some

    Hi all,
    I've been a frequent reader of this forum when my bladder problems started 3+ years ago.
    By no means I am a medical professional but if I read a story such as I am about to tell three years ago it would have saved me a lot of pain and gave me hope. My problems started after the series of UTI's like for most people here. UTI's were in fact I believe the consequence of starting hormonal anti-conception. To all the girls out there: if you feel that after starting the pill your vaginal flora changed and you are getting yeast infections or got all of a sudden a UTI stop the pill and ask your doctor for the different solution. I have never had UTI after sex since I was 18 and and then at 33 after being 6 - 8 months on the pill I got like 4.
    So after the last UTI cleared with antibiotics the symptoms returned and stayed with me for more than 2 years. My symptoms were urgency, constant feeling of the full bladder to the point it would get painful and tender and at times weird almost arousal like feeling in your private parts. I had real bad days and then a bit better days but could never really make the connection and figure out why.
    I've been to 3 urologists, my cystoscopy came clear (was regular one not with water extension). Diagnoses I've got was overactive bladder (and being stressed dahh) but the overractive bladder meds did nothing for me. Just made it worse after I took them for a week or so (tried Visicare and few less known brands). I tested for all possible infections and they found ureaplasma, which I treated with antibiotics but it didn't help my symptoms. I also stayed in sanatorium where they tried all sort of procedures, did acupuncture (did help a bit!) and tried about every supplement which is recommended on the forum (marshmallow route, harvest aloe, baking soda, taking prelief with food..)
    After this all began, approximately 3 months in, I also started following IC diet and stopped all alcohol. After 6 month I was size XS (one size down) which was not even pretty cause I am rather tall and was already a bit too old to start model career And I could never pin point any connection between what I eat and how I feel except for the very obvious ones like coffer and carbonated drinks.
    Almost 9 months in I said kind of fck it, because all doctors kept saying that my bladder lining was normal so I started to drink a bit (with prelief) and also started to have sex again and exercise. I couldn't do it on each day because of how I felt but especially with sport I pushed myself to go to the gym
    I always felt better during exercises (I do weight training) and after sex.. Also few drinks in the symptoms will calm down slightly. I know how it sounds and I am not saying booze and sex is the answer (please read until the end!) but that was very weird. I would only say you can try if your cystoscopy come back completely normal and you do not have any sharp pain. Try a little glass of clear alcohol, some exercising and light stretching and look if at any point it makes any difference.
    I got back to more normal diet (started to eat chocolate and fruit again, have a glass of wine with dinner) but still avoided coffee, non-herbal teas, everything with bubbles, vinegar and everything containing citric acid I started to have a bit more good days. But there were still a lot of bad ones!
    2 years in, I had appointment with PhD urologist who is specializing in IC (I live in Belgium, so not sure how relevant the name is) and he scheduled an urodynamic test. After the test he told me I have a hypertonic pelvic floor. They determined it based on the fact that after my bladder was filled I had difficulty starting urine stream and the pressure was too high.
    It actually made sense even before my bladder problems I couldn't easily start peeing in public bathrooms for example, if I knew someone was outside waiting. I always had somehow to relax into that... I was also the person always peeing before leaving the house, having to pee again sometimes after I just did.
    UTIs pushed my already hypertonic pelvic floor muscles in overdrive, and they never really relaxed after, keeping spasming a bit. Then the weird fact that I felt better during training or sex, or a night out started to come together a bit. Unfortunately there is no immediate cure. Actually after my first visits to pelvic floor therapist I had the worst weeks in years. And it's not easy to find the pelvic floor therapist specializing in relaxing it. Mostly it's training and kegels (which by the way anyone with hypertonic muscles should strictly avoid)
    I was also not happy with my pelvic floor therapist, she didn't give any specific advises and it was a lot of breathing and huffing and puffing and let it go mantra's.. I mean I did want to let it go after 2+ years believe me, but is not easy as I had zero mental connection with those muscles.

    But there were some good things that I want to list here, that helped me to get to 99,9% back to normal and have a very good 12 months. And as well after I ironically had a UTI (again!) recently and the hell broke loose, I was able to calm down my symptoms within 10 days and I hope within another month I'll get back to where I was before that. My 99.9%

    Only try any of below if you can relate to above story and you did visit urologist, have no sharp pain and your cystoscopy came back clear:

    Identify your pelvic floor muscles by trying to stop urine flow midstream
    Remember the feeling of them being strained, is like a lift (elevator) on the upper floor
    Try to relax and bring this lift down on the ground floor
    Control during the day if the lift is up or down (we want down!). Is small thing but make it a habit. It does make huge difference
    if you have trouble with above, and still do not "feel" you pelvic floor, sit on a fitball with your back straight and try to imagine your vaginal lips (i know is gross, sorry!!) "kissing" the fitball. that should also give you the feeling of pelvic floor relaxing and going "down"
    When you lay in bed, lay on your back and put the pillow under your knees
    When you sleep on the side put the pillow between you knees
    Avoid sitting still for long period of times, even at work try to walk and stretch at least every 45 min
    Start exercising (whatever works for you, but may be no jumping or sprinting) and do a good 10 - 15 minutes stretch session after your workout
    Look up pelvic floor relaxation: stretch exercises online and practice some
    The easiest and easily my favourite one is lay against the wall with your legs up the wall and a little cushion underneath your pelvis (legs as straight as you can so it forms like 90 degrees angle to the wall): stay like this for 15 minutes every day
    Never push when you pee
    Try to pee in a squat position in the shower or bath to get this more relaxed voiding and not to put stress on pelvic floor muscles
    Avoid any drinks or food that make you go to the toilet more often (beers, carbonated drinks, coffee, citrus juice and all packaged juices)
    Avoid any foods that are annoying to the bladder lining, but don't go to extremes (for me it was everything with vinegar, but all the rest I am OK)

    and the best news you probably don't have IC if any of above helps you. They are so quick to apply IC to any disorder that they can't figure out
    Is not pelvic floor IC.. I actually like the Phantom UTI. Your UTI is gone but the body still has this feeling resembling it, cause muscles had to work so hard ..

    and if you do have extra cash, try good acupuncturist. At the certain point I was so stressed and depressed, I completely lost connection to my body and acupuncture got me back a bit emotionally and helped to re-establish that connection. Even it had by no means cured me


  • #2
    to the IC Network.

    It sounds very much like your problem could be PFD (pelvic floor dysfunction) --- which can usually be helped by a physical therapist --- but the therapist must be familiar with this so appropriate therapy is done.

    Thank you for sharing your success.

    Warm hugs,
    Donna
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

    Have you checked the ICN Shop?
    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

    Patient Help: http://www.ic-network.com/patientlinks.html

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    [3MG]

    Anyone who says something is foolproof hasn't met a determined fool

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    • #3
      you are not crazy about the alcohol (of course don't over do it) I have IC and I'm pretty sure my IC symptoms are probably 99.5% because of PFD. The alcohol (me just lager beers) help because it relaxes you. Also one time during a bad IC time i was having for a couple of months I went on vacation and all symptoms went away within a couple of days. I think alot of ICers' probably have a lot of stress no?
      Diagnosed with IC sept. 2008, treatment then was hydrodistension, heparin instills for about 4 months and IC diet; symptoms lasted until sept 2009. Then only a couple of relapses overworking, stress etc. Then completely in remission until Jan. 2016 now pretty much symptom free as of mid august 2016.

      Symptoms: overall body aches, dryness feeling at vaginal opening, sitting makes it worse, standing makes it worse, stress makes it worse, no frequency or urgency, worse symptom is at night with panging of uretha/bladder.

      - went on diet, started Cysto Renew 3/31/16 and yoga at least twice a week.
      - tried uribel but really not for my symptoms since it seems it is for frequency and painful urination which I don't have
      - Ativan when needed to relax.
      - Elmiron only took for a couple of days; didn't like it
      - took atarax 1/2 10mg atarax pill at night really helped but gave me nightmares
      - tramadol worked great for back aches
      - generic claritin D worked best for me for calming bladder down and my panging
      - still taking cysto renew 4x a day and believe this and diet helped the most.
      - took dosage of cysto renew down to 2x a day and still ok

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      • #4
        Thanks for the positive story! I definitely need to hear them since I'm only recently diagnosed. I will see if relaxing the pelvic area helps give me any relief.

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        • #5
          Thanks for sharing this success

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