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  • What is going on??

    Hi guys,

    My first post here! Here's an overview of my journey over the last 9 years, would love to know if anyone has any similar stories/can give me any idea on what is wrong with my body!

    I am a 27 year old female 9 years ago I started to get reoccurring urine infections (positive infection). After a few months I started to get negative urine samples for urine infection but still had all the symptoms burning urine, urgency, frequency (up to 10 times an hour at its worst) constant burning pain between the anus and vuvla. So the doctors did the standard ultrasound scans and transvaginal scans, numerous blood tests. They said nothing was wrong with me and to take antibiotics (amoxicillin) for 6 months. This did nothing other than make me immune to amoxicillin. Doctors then gave me a ton of antibiotics and told me to take them after sex even though I insisted it wasn't related to this. They told me there was nothing else they could do.

    So for a few years I just put up with it I would get the symptoms maybe 2/3 days a month so it was fine. Then it got worse and was happening more frequently so the doctors finally referred me to urology. I had a rigid cystoctopy, I didn't see my consultant after was told by a nurse everything was normal and discharged back to my GP. There is actually no record of me having this operation anywhere which is an absolute joke so I have no idea what he did during that operation. Gp said I was fine and to just keep bringing in urine samples.

    Fast forward to 2019 I'd just been putting up with the pain it was still only happening for around a week a month so was fine. But in 2019 it got way worse it was happening everyday and I was screaming in pain everytime I urinated. I changed to a different GP surgery and it was back to square one we did bloods, urine samples, ultrasound, transvaginal ultrasound, nothing all normal. Doctor suspected I could have endometriosis so I was listed for a laparoscopy. It was an absolute nightmare and I ended up filing a complaint against the surgeon but that's a different story. Was told everything was normal and was discharged back to my GP without seeing the surgeon I just saw nurses after the op.

    In August 2019 I got diagnosed with coeliac disease via endoscopy.

    At this point the doctors are stumped so I did my own research and found out about IC. I rang up and said I believe I have IC doctor looked through my notes and agreed. By this point In the way of pain meds I had tried: ibruprofen, paracetamol, diclofenec, naproxen and co codamol none of them helped. So doctor put me on pregabalin. It was an absolute life saver!! For 6 months no pain whatsoever. Then the pregabalin stopped working so we tried gabepentin which didn't touch it. By this point it's the beginning of 2020 and the pain is every single day I literally wake up crippled over in pain.

    Doctors said they couldn't offer me IC treatments until I had a confirmed diagnosis so they referred me back to urology. The wait was 30 weeks for a consultation so I just paid for it privately. Consultant agrees it sounds like IC and wants to do another cystoctopy to confirm. I'm not sure how it can be though as I have already had a cystoctopy?? Anyway Coronavirus hit so that went out the window. The pain is so bad that I kept ending up in a&e to get morphine but they wouldn't do the procedure as I already had an outpatient appointment I just had to wait. Doctors have now put me on tramadol daily which is killing the pain but tramadol is a horrible drug to be on so I want off of it asap. My consultant is finally ringing me on Tuesday so I'm praying he has an operation date.

    I'm absolutely terrified that I'm going to have the cystoctopy and be told everything is fine. The doctors have said this is my last chance and if I'm discharged back to them all they can do is send me to pain clinic. I cannot live like this and at my darkest moments have considered stabbing myself in the bladder so that they have to do something, I know that sounds drastic but that is how horrendous the pain is. I haven't been able to work since November 2019 because of this.

    If anyone can help calm me down or has a similar experience I would love to hear from you!

    Thank you in advance

  • #2
    First of all, I'm glad you found the IC Network. It does sound like interstitial cystitis is a possibility for you.

    If your doctor is willing to prescribe Tramadol for you and it's working, you might want to think about staying on it, at least until you have a diagnosis. In the meantime, have you tried an IC diet? If not, I suggest you begin today. I also think keeping a diary can be a help --- make a simple form that shows time of day, everything that goes in your mouth, urinary frequency (and about how much each time), activities, what you are wearing, even personal and laundry soaps. You may find some irritants that way.

    You could also look at the list of medical professionals on this site to see if there's someone listed in your area who has been recommended by another IC patient.

    And please let me know how you are doing.

    Sending warm well wishes,
    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


    • #3
      Originally posted by ICNDonna View Post
      First of all, I'm glad you found the IC Network. It does sound like interstitial cystitis is a possibility for you.

      If your doctor is willing to prescribe Tramadol for you and it's working, you might want to think about staying on it, at least until you have a diagnosis. In the meantime, have you tried an IC diet? If not, I suggest you begin today. I also think keeping a diary can be a help --- make a simple form that shows time of day, everything that goes in your mouth, urinary frequency (and about how much each time), activities, what you are wearing, even personal and laundry soaps. You may find some irritants that way.

      You could also look at the list of medical professionals on this site to see if there's someone listed in your area who has been recommended by another IC patient.

      And please let me know how you are doing.

      Sending warm well wishes,
      Donna

      Hi! Thank you for the reply.

      The gp will prescribe me tramadol until I have the cystoctopy after that they will no longer prescribe it and I want to be off it asap as I'm having to take antisickness tablets & daily laxatives (all prescribed by GP) they also stop me from sleeping which is delightful haha

      I follow the coeliac diet, the IC diet and FODmap diet so essentially I eat dust this is under supervision of a dietitian who is treating me as if I have IC because we all assume I do. I can't wear any tight clothes I literally just wear my husband's clothes otherwise I end up in pain and I only use dove soap. After 9 years of this I've tried literally everything I do pelvic floor exercises but it doesn't seem to do anything. I've tried every medication the gp can offer me.

      My consultant is ringing me tomorrow so fingers crossed I get some answers I just don't get how IC could have been missed on my last cystoctopy then found on this one? But I'm not a doctor so

      I live in a very rural part of the UK so my nearest specialist is about 6/7 hours drive from me hopefully my current urologist will sort it so I don't have to go down that route

      Thank you again

      Comment


      • #4
        A 6+ hour drive to a specialist is criminal with this particular problem. I'm sorry it's such a long distance for you to get the help you need.

        I'm new to this and just wrote my first post under "Newly Diagnosed," but I think it's interesting that you and I both have Celiac and now have this. I also have Fibro on top of that for which I was prescribed Tramadol. I hated Tramadol -- I only took it on the worst days when I couldn't do anything if I didn't. I made sure never to take it two days in a row so I wouldn't become dependent; in practice, I rarely took it more than once a month. That was a good strategy for me and allowed me to get off of it easily, but I don't know if your pain ebbs and flows any, so that might not be an option.

        I hear you on the very limited diet! I was thinking of writing up some of the tastier experimental recipes I've made with the five or so ingredients I can eat. When I do, I'll post them.

        I hope you get some good/helpful news soon.

        Comment


        • #5
          Hi Lanzi,

          Thanks for your reply! The consultant I have isn't a specialist but he does seem to know his stuff. I've got my second cystoscopy within the next 8 weeks he rang me on Tuesday to let me know! This one is with hydrotension the other one wasn't.

          Sorry you have coeliac it sucks, because coeliac is autoimmune it tends to cause other autoimmune disorders it caused me to have depression/anxiety my whole life. I came off the gluten last year and both of those conditions have disappeared!! Amazing what food can do to you!

          Yeah tramadol sucks but I can't get out of bed without it oramorph is way better for me but my doctors won't prescribe it because it's addictive like tramadol isn't?!? Haha they aren't the brightest!

          Ohh lovely I'll keep an eye out for the recipes although I'm one of the lucky 5% coeliac who can't tolerate gf oats! The joys haha

          Take care!

          Comment


          • #6
            It was amazing the things that got better when I stopped gluten about 13 years ago. Unfortunately, I think a lot of permanent damage was done, and having eaten gluten and repeatedly damaged my body for my first thirty years, I have no doubt, has led to my other chronic health issues. Most of my paternal side has it and among our comorbid issues are pancreatitis, rheumatoid arthritis, back pain (I suspect Ankylosing Spondylosis but doctors are taking their time), psoriasis, various mental heath issues, mystery arthritis, dental issues from malnutrition in youth... We cousins and siblings all have different complications, but none of us has been spared a bonus illness (or, if lucky like me, many bonuses).

            The younger generation is the first that we've known since birth can't have gluten, so we're hoping that as they grow up, they won't deal with all these secondary issues like we have. I think I'm the only one in my family who can handle oats with any frequency. In the winter months, I'll have oatmeal a few times a month. I remember at the Celliac Disease Foundation conference when people were really excited about gluten-free oats, all the doctors speaking said that a lot of people would have trouble with them and that even those who seem to tolerate them should keep it to 1/4 cup any given day max. I stopped going to the conferences, so I'm not sure if those guidelines have changed, but I do worry about all the oat-based foods in the gluten-free section these days. A person new to the disease could really mess themselves up.

            I am sorry you are in so much pain and they won't give you what would be more effective. If doctors would create proper tapering schedules and programs for patients, the addictive quality of some medicines would be less of a concern. I think typing up some recipes will be my weekend project.

            I hope today is a good day.
            Last edited by Lanzi; 09-25-2020, 01:29 AM.

            Comment


            • #7
              There are many different diets out there for different things --- and having more than one condition that requires diet changes can be very difficult. Sometimes keeping a food diary can help identify problem areas. We can be so different that sometimes that's the only way to identify our personal triggers.

              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

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