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IC and Urethra pain?

Posted , 7 users are following.

amanda87611
amanda87611

I have been having pain off and on since October 2017. The last doctor I saw in April said he thinks I have IC since all my tests over the months come back fine. My biggest complaint of pain is in my urethra area. I am wondering if any of you who have IC also experience pain in this area? I am wondering if it is IC related or if it could be from something else. The only thing that helps is a heating pad but unfortunately cannot bring it everywhere. Does anyone have any solutions?

0 likes, 13 replies

13 Replies

  • brenda53218
    brenda53218 amanda87611

    Posted

    Hi Amanda, yes i have also had the pain you are describing. I was diagnosed I believe was in February 2017. I also noticed that certain toilet paper aggravates it. I know sounds funny, but all my life i used all brands, whatever was on sale, but not i can't since ic entered my life. As to pain, I swear by tens device, it has helped me alot. 😎

    • amanda87611
      amanda87611 brenda53218

      Posted

      which brand toilet paper have you found is less irritating? I have been buying sentless body washes but haven't notices much of a difference

  • sandy43858
    sandy43858 amanda87611

    Posted

    Hiya yes I suffer bad with urethra pain. My pain feels like a burn. My vagina feels swallow and sensitive. I also get pelvic pain. I take D Mannose. Aleo Vera tablets and sometimes marshmallow tablets. Sometimes I have to put ice between my legs or on pelvic bone. What s your pain like
    • amanda87611
      amanda87611 sandy43858

      Posted

      My pain feels very similar to what your describing a burning or pinching type feeling. Have you found the D Mannose to help much? I have tried Aleo Vera tablets unfortunately make my symptoms feel worse and marshmallow root does help ease my pain a little.
    • sandy43858
      sandy43858 amanda87611

      Posted

      Hello I've been taking it for 2 years nearly. I would say it does help. I could bottle between my legs also helps. I brought some Epsom salt I've heard it helps with muscle pain. I'm going to try it next week. Don't use aleo vera from the basic shops it has acid in it. Use one that only has the inner leaf. Another woman here told me about it.

  • shirley_an59859
    shirley_an59859 amanda87611

    Posted

    Hi Amanda, yes I have experienced urethral pain, discomfort and a swollen feeling in the urethra - very uncomfortable especially when driving and being jiggled about over bumps etc! The only thing that helped me was HRT, first as a cream (Ovestin) which helped a bit but could’ve been better, then by systemic HRT plus vaginal estrogen pessaries (vagifem),  my uro gynaecologist thought it was due to thinning of the lining of the urethra due to low estrogen levels.  As the HRT worked, I’m guessing he was correct! I still get some discomfort now and then but nowhere near as bad as before.  Aggravating factors are: wiping too hard with loo roll (the only one I can use is Andrew aloe Vera) using anything other than plain water to clean the vulval area, drinking strong tea, coffee or orange juice and getting even slightly dehydrated.  Since being diagnosed with IC, the correct diet has helped a lot with the bladder pain too.  Urethral pain is horrible - they used to call it ‘urethral syndrome’ (I think some still do) so you could look that up and see wha you can find out.  Only use trusted sites though! The other thing that can help when the pain is burning in nature is cystopurin sachets to neutralise the urine, Azo for pain (turns your wee orange so don’t be alarmed) or just drinking more plain water (not fizzy) or milk.  Hope you find some relief soon!

    • amanda87611
      amanda87611 shirley_an59859

      Posted

      Thank you for your response I am glad some of these creams have worked for you and will definitely bring it up to my doctor on Monday. Last time he just recommended the diet but for me the diet only seems to help it not get worse it hasn't helped my pain go away completely.

    • shirley_an59859
      shirley_an59859 amanda87611

      Posted

      Hi Amanda. It would seem you need extra help alongside the diet.  Also it’s easy to accidentally eat or drink the wrong things - you can get a tablet called prerelief to take if that happens.  I think Jean’s reply about using the right kind of aloe Vera and the serrapeptase sounds interesting- sadly one cure doesn’t fit all, but I’d say it’s definitely worth a try.  Also don’t use any soap or emollient at all near that area - nothing except plain water! And make sure shampoo doesn’t touch it if you have a shower - and be very gentle when wiping - don’t use the moistened toilet tissue either.  I find the Andrex aloe Vera best as it doesn’t ‘shed’ bits of fluff which could irritate.  Urethral pain is horrible so I do sympathise.  It’s a case of keep trying and researching until you find what works for you.  I had to stop swimming due to the chlorine so there’s a lot to think about! 
  • jean68130
    jean68130 amanda87611

    Posted

    Hi Amanda, I was like you 8 years ago - the urethra pain was unbearable (it has been reported to be as bad as a cancer pain )I  got nowhere with doctor visits - kept giving me antibiotics for months but they did not do the trick. I read that IC does not respond to antibiotics - just a waste of time, money and effort. After much research I read on an American IC site that Aloe Vera is the answer BUT not the usual ones that are freely available. The USA ones cost over 100$ a bottle but I found the same ones are available in the UK at a fraction of the cost - about 14 pounds a bottle. You need to purchase PUKKA WHOLISTIC ALOE VERA CAPSULES - these are freeze dried and contain only the inner leaf. I get mine online from Naturisimo.com with free postage. After a short while of using these together with Serrapeptase (these are great for inflammation - worth reading up about them on the internet) every day I was completely free from pain and IC and, fingers crossed, remain so. In the beginning I took 2 Serrapeptase tablets every 2 hours for about half a day then went to one a day.. Don't forget that green tea products and cranberry juice are a no no for IC sufferer.

    Good Luck

    Jean

    ?Jean X

    • amanda87611
      amanda87611 jean68130

      Posted

      Thank you for replying I will look into Serrapeptase I haven't researched that remedy before. I did try the desert harvest brand aloe vera and it seemed to increase my urgency it could have been a coincidence though. I am considering trying them again.

    • jean68130
      jean68130 amanda87611

      Posted

      Hi, Desert Harvest are very expensive but the Pukka ones exactly the same but much much cheaper - don't forget the ordinary aloe vera are not suitable as they are not freeze dried and the inner leaf used. I'm sure if you also try serrapeptase you'll be ok.

      Good Luck

      Jean

  • jean68130
    jean68130 amanda87611

    Posted

    Hi Amanda, I've sen t a reply but it waiting to be monitored - hope you eventually receive it as it will help you.

    Regards

    Jean

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