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Hello humans! When will the pain stop?!?

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  • Hello humans! When will the pain stop?!?

    Hi everyone!
    Just wanted to introduce myself and share my story 💙 it's quite long so I'll do my best to make it short 🙈 I'm Sam I'm 27 year old female living in the UK

    In 2012 I started getting monthly confirmed urine infections. Doctors would just throw me antibiotics and send me on my way. Towards the end of 2012 I was getting UTI symptoms but no infection was showing. I was sent for transvaginal ultrasound and nothing was found so they put me on amoxicillin for 6 months complete waste of time it did nothing and now I can't take amoxicillin because it doesn't do anything. Doctors told me there was nothing else they could do and to just keep dropping in urine samples 😡

    By 2014 I had urethral burning and urgency/frequency almost every other week finally got a urology referral had a rigid cystoctopy woke up urologist said there was nothing wrong with me and referred me back to the GP. GP said we can't help you 😡

    By 2019 the burning pain was happening every single day. Went to a new gp who sent me for transvaginal ultrasound which showed nothing. She prescribed co codamal, diclofenac, naproxen and codine over the span of a few months none of which touched the pain. She then referred me to gynecology because she thought it was endometriosis even tho I said multiple times it's definitely not. Gynecologist did a laprascopy found nothing and referred me back to my GP. At this point I told my GP it was IC she googled it and agreed and prescribed pregabalin which worked a charm for 6 months no pain at all 🥳🥳 then it stopped working 😡

    In August 2019 I was diagnosed coeliac.

    GP prescribed amitriptyline, gabepentin, antihistamines pretty much every drug listed for IC over a few months then finally caved after much nagging and referred me to urology. GP prescribed tramadol because I was ending up in a&e constantly. I found the best urologist in my area and paid to see him privately he did a rigid cystoctopy with hydrotension November 2020 found out I do have IC and my urethra was the smallest he'd ever seen so he stretched it in surgery. The bladder stretch worked.... briefly. By January 2021 I had a follow up and it had already flared and I was back on daily tramadol. Consultant said there's no point in stretching it again because it flared up so quickly. He referred me for bladder instillations a brand called instillamed im on 5/9 and the pain is getting WORSE. I am now getting pain in my bladder like cramps 😡

    Tried to ring my consultant after my instillation on Thursday because I was in absolute agony and his secretary informs me he's LEFT. I tracked him down to a town around an hours drive to me but the hospital don't know if they'll be able to refer me back to him again 😭 they won't refer me to a consultant until my instillations are done so I will fight and no doubt pay to see him if I have to. Don't really know what my next steps are as were running out of treatment options really fast and after 10 years of pain I've had enough 😩

    hope everyone's having a pain free day 💙

  • #2
    Yes, it's also necessary the doctor could properly diagnose the problem, I faced Chronic Pain almost 6 months, but I really don't know, it was a Chronic Pain or just a lower back pain, because doctor's couldn't diagnose my problem, but Now I am completely recover, and I tried to change my sleeping style which were recommended by one doctor, because it's also depends on your pain problem.
    Allswell Home coupons

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    • #3
      Originally posted by Midgetsammi View Post
      Hi everyone!
      Just wanted to introduce myself and share my story 💙 it's quite long so I'll do my best to make it short 🙈 I'm Sam I'm 27 year old female living in the UK

      In 2012 I started getting monthly confirmed urine infections. Doctors would just throw me antibiotics and send me on my way. Towards the end of 2012 I was getting UTI symptoms but no infection was showing. I was sent for transvaginal ultrasound and nothing was found so they put me on amoxicillin for 6 months complete waste of time it did nothing and now I can't take amoxicillin because it doesn't do anything. Doctors told me there was nothing else they could do and to just keep dropping in urine samples 😡

      By 2014 I had urethral burning and urgency/frequency almost every other week finally got a urology referral had a rigid cystoctopy woke up urologist said there was nothing wrong with me and referred me back to the GP. GP said we can't help you 😡

      By 2019 the burning pain was happening every single day. Went to a new gp who sent me for transvaginal ultrasound which showed nothing. She prescribed co codamal, diclofenac, naproxen and codine over the span of a few months none of which touched the pain. She then referred me to gynecology because she thought it was endometriosis even tho I said multiple times it's definitely not. Gynecologist did a laprascopy found nothing and referred me back to my GP. At this point I told my GP it was IC she googled it and agreed and prescribed pregabalin which worked a charm for 6 months no pain at all 🥳🥳 then it stopped working 😡

      In August 2019 I was diagnosed coeliac.

      GP prescribed amitriptyline, gabepentin, antihistamines pretty much every drug listed for IC over a few months then finally caved after much nagging and referred me to urology. GP prescribed tramadol because I was ending up in a&e constantly. I found the best urologist in my area and paid to see him privately he did a rigid cystoctopy with hydrotension November 2020 found out I do have IC and my urethra was the smallest he'd ever seen so he stretched it in surgery. The bladder stretch worked.... briefly. By January 2021 I had a follow up and it had already flared and I was back on daily tramadol. Consultant said there's no point in stretching it again because it flared up so quickly. He referred me for bladder instillations a brand called instillamed im on 5/9 and the pain is getting WORSE. I am now getting pain in my bladder like cramps 😡

      Tried to ring my consultant after my instillation on Thursday because I was in absolute agony and his secretary informs me he's LEFT. I tracked him down to a town around an hours drive to me but the hospital don't know if they'll be able to refer me back to him again 😭 they won't refer me to a consultant until my instillations are done so I will fight and no doubt pay to see him if I have to. Don't really know what my next steps are as were running out of treatment options really fast and after 10 years of pain I've had enough 😩

      hope everyone's having a pain free day 💙
      Have you tried an IC diet? Some ICers, including me, find that is the most effective treatment. You could also try keeping a diary, listing everything that goes in your mouth, activities, urinary frequency (and about how much each time), and pain levels. Sometimes we can identify triggers that cause our pain by writing everything down and reviewing the record to learn what makes us feel better --- as well as what causes pain.

      Sending healing thoughts,
      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

      Comment


      • #4
        Originally posted by ICNDonna View Post

        Have you tried an IC diet? Some ICers, including me, find that is the most effective treatment. You could also try keeping a diary, listing everything that goes in your mouth, activities, urinary frequency (and about how much each time), and pain levels. Sometimes we can identify triggers that cause our pain by writing everything down and reviewing the record to learn what makes us feel better --- as well as what causes pain.

        Sending healing thoughts,
        Donna
        Hi Donna 👋

        Yes I follow the IC diet which is a challenge whilst following coeliac diet also but I know all my trigger foods. In fact I eat a set list of meals there's only around 6 of them but I am too scared that something will trigger my bladder or coeliac so I stick to what I know. I don't do anything in terms of activities I had to give up work a year and half ago because I'm in agony all the time.

        Actually was meant to have an instillation today 6/9 but me and the nurse agreed we weren't happy to continue because the instillations are causing me so much pain. I've been referred back to my consultant so we will see what he wants to try next

        Comment


        • #5
          You might want to ask about instilling lidocaine or marcaine before instillamed to see if that will help.
          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

          Comment

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