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Pelvic pain and frequency - My success story...hope it brings hope!

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  • Pelvic pain and frequency - My success story...hope it brings hope!

    Hi All

    I’ve wanted to write this for a long time. This is an account of my issues with pressure, urgency, frequency, painful sex and very painful pelvic floor.

    I first began experiencing what I would class as IC symptoms in 2009, but looking back now I realise I had pelvic floor problems my whole life.

    From when I was young until I was early 20s (so embarrassingly old) I would wet myself if I laughed a lot. This caused me so much embarrassment over the years you can’t imagine (or maybe you can!)

    I also struggled a lot to use tampons. Looking back now I can see that I had incontinence issues which led to my pelvic floor becoming overly tight (and also weak).

    Fast forward to my 20s and my first proper relationship. I got cystitis which was treated with antibiotics, so far so standard. However after the infection I felt that my bladder was never really the same, I often had a cystitis type feeling and started getting bladder pressure during sex. Eventually this led to me getting pressure all the time as well as urgency and frequency.

    This really upset me hugely, even though my symptoms were relatively mild. I spent a fortune on different herbs, supplements, expensive specialists, different diets. I changed my contraception. Nothing helped at all.

    I began to adapt and was doing okay when I began a new relationship and got thrush but continued having sexual while I was unwell. This was very painful and escalated to me having pain in sex all the time. I constantly found sex just something to endure and get through. I didn’t tell my boyfriend (now husband) as I was so embarrassed.

    I did try speaking to a GP and saw various different specialists (urology / gynaecologist). None of them we’re very helpful at all, especially on the pain side. Things got worse again when my diet started affecting my bladder. I had to give up red wine and all drinks other than water (and I was a real Diet Coke addict). It just made me so sore.

    things then got worse AGAIN when after a standard HIIT class (the type I would do all the time) my whole pelvic floor / urethra became unbelievably sore. I remember lying in the bath crying and feeling suicidal. I was so upset and fed up. This condicided with me starting a new job and having to travel a lot, I can remember being on the train almost in tears dosed up on codeine and then trying to act to clients and my boss like I was fine. I was put on anti depressants by my GP and referred to a urologist who was adamant that I had endometriosis and wanted to do a laproscopy. I should add that as part of the investigations they tried to insert a catheter, something I could tolerate in the past. They couldn’t even get it inside me I was crying in pain.

    i didn’t have the laproscopy as I was very reluctant to be put under an anaesthetic. I also felt like the consultant wasn’t listening to me at all and was going down the wrong path. Some of you can probably relate to feeling like the doctors just aren’t listening. I cried after appointments a lot.

    eventually, solely through my own research and not once did any medical person suggest this to me - I looked into pelvic floor physio therapy. My first session the therapist explained that my pelvic floor was very weak but very tight. In that first session the only exercise she gave me to do was to practice breathing. Needless to say I left feeling down and like I still wasn’t getting anywhere. But I stuck with it. 6 months later I was almost like my old self - I even managed to go to Glastonbury festival with all the walking and toilet issues that presents, and didn’t experience any pain until the way home.

    around the same time I started with my physio I also started taking Vesicare for my urgency / frequency issues. I also had some acupuncture which maybe helped, I can’t say.

    18 months on I am now able to have sex without pain. I do still get pain from time to time (during sex and at other times in the day) but I know how to manage it when I do with stretches and trigger point massage. I can go long periods of time without thinking about my bladder or pelvic floor at all. I still don’t drink anything other than water, one coffee a day and some alcohol I can tolerate - I miss red wine and Diet Coke a LOT but it’s a small sacrifice to make to not be in pain.

    sorry for the length of the post but I really wanted to make it clear how much of a bad way I was in. I was very very depressed for a long time.

    happy to answer any questions anyone might have and if you are at the start of symptoms or a diagnosis please trust me I know what you are going through. Please don’t focus on the horror stories, and please trust me it will get better! Xxx

  • #2
    That is so great! Thank you for sharing.

    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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