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Bladder burning pain for 13 years on off

Discussion in 'General Discussion Subforum' started by JennyDK35, Oct 8, 2019.

  1. JennyDK35

    JennyDK35 Newcomer


    Im a 35 year old woman from Denmark. In Denmark we dont have TMS doctors or therapist so i want to to tell my story to hear if you Think i have TMS if you Think there is hope for me. I have just ordered sarnos books but have read alot inhere and Seen youtube clips about This too.

    I grew up in A House with 4 sisters/brothers we were 5 children. Im in the middle My father was A bit violent and angry and could explode Any time for Small things like if there Lay A piece of toy on the Ground or so. My mom was depressed at times but also Loving but did not stop my father when he flipped out. I was bullied in School and as 12 i developed headaches for A year no doctors could find anything ..

    When i was 23 i Got some infection in my lady parts that was treated but the pain did not go away it was diagnosed vulvodynia,

    It Got better but the pain suddently spread to the bladder, i was through years in hell with bladder stretches, cystoskopi, pills, ect and suddently it Got A bit better for some years and i thought i was saved from the hell. But no!!!

    8 month ago after 8 ivf fertillity treatments with the great disappointment of no pregnancy my bladder pain has come back ..

    I have had A MR scan that looks normal i have had A bladder cystoskopi the bladder Lining looks normal no ulcers, i have no uti they come up negative .. i had painfull bladder installations and opioids nothing Works. It bothers me so much i feel like my life is over.. it Burns 24/7 in my bladder and uretra
    And sex hurts.

    My Dream off becoming A mama is crushed because with This pain i dont Think i Can become A good mom and also ivf is over its extremely exspensive, besides the IC i also have anxiety, insomnia , ibs and is A very sensitive person who is Always worried and scared of everything ..
    I sometimes feel like i cant Breathe.. i have Been in A lot of therapy during the years but it has never really helped me and since i cant work with This pain i cant afford it..
    Do you Think i have TMS ?

    I have A wonderful man now but in the past i have had men WHO used me and was not good for me..

    Ps. Im sorry for Any misspelling im Danish.

    I really need some hope anyone with IC who is Healed?

    Angel8 and westb like this.
  2. westb

    westb Well known member

    Welcome @JennyDK35 . You're in the right place, and from the way you describe your history and personality type it sounds as if you have the "TMS personality". I'm very sorry you're having this pain and for the troubles and pain you have had over the years. For me, I have IBS/rectal spasm and extreme bladder frequency (IC) and I too fit the personality type to a T. I'm not healed but I'm on the way. Recovery can often be slow, which does not mean it's not working. We have mind/body issues and it can take time for our brains to rewire and stop creating these muscular tensions and symptoms in our physical bodies.

    Have a look through at Alan Gordon's Pain Recovery Program (the link is at the top of the page) which I have found very helpful and revisit often. There is also the Structured Educational Program, which involves self knowledge and self examination though writing, which many people here have found useful. If you're comfortable with reading books in English, I'd recommend Dr John Sarno's books to start with - don't be put off by the back pain emphasis, Dr Sarno refers to the myriad other TMS symptoms in his writings.

    All the best to you. There are a lot of resources which will help, and the secret is to find the ones that work for you.
    Last edited: Oct 8, 2019
    Angel8, JanAtheCPA and JennyDK35 like this.
  3. NicoleB34

    NicoleB34 Well known member

    your story is very much like mine and many others with pelvic pain. IC is definitely TMS is the majority of cases (i understand there's a rare subset that's autoimmune). Even bladders that have a red lining and ulcers are still initially caused by nerve dysfunction. Some of us genetically have the types of nervous systems that are always on high alert. Also, most people prone to TMS, especially pelvic pain, have a history of anxiety and trauma. They're finding more and more links from the pelvic floor, to the sympathetic nervous system, the part that controls fight or flight. This is why the pelvis is so affected by stress and anxiety. i'm going to share an article that discusses central sensitization. i know it's more of a medical term, and some people here scoff at the idea of CS, while other doctors have said that CS and TMS are pretty much the same thing, it's just that CS is described more in a clinical way. I feel like i really fit the CS model but using mind/body techniques that you'd use with TMS, have been helpful. This article mostly uses Endo as an example but pelvic pain disorders are all linked.
  4. thomasthedog

    thomasthedog New Member

    Jenny I had IC pelvic pain for over 6 years . I took An analgesic blue pill that helped. . I could not for the life of me believe that my I C was cured when I read Dr. Sarnos book healing back pain - for back problems. They were all related. I am currently suffering from sciatica that I know is TMS as well. I just bought the movie All the rage: saved by Sarno and believe it or not my pain has gone down considerably. So Jenny do the work find out what’s going on in your life that is causing this pain. It emotional not physical is the mantra I repeat several times a day
    MIsty152, JanAtheCPA and JennyDK35 like this.
  5. Rainstorm B

    Rainstorm B Peer Supporter

    Hello Jenny

    I'm so sorry to hear you have been suffering like this for so long.

    Have you come across Nicole Sachs? She has a free podcast called The Cure for Chronic Pain that I have been listening to recently (thanks for recommending this @JanAtheCPA ) She worked with Dr Sarno and uses the TMS approach to help people with many, many chronic health problems, including the type you mention. I listened to Episode 31 yesterday where she specifically talks about the rising numbers of people she is seeing with pelvic issues like yours and her firm belief they are forms of TMS. It might be worth a listen if you need some reassurance about whether this approach could help you.

    Sending you love
    JanAtheCPA and JennyDK35 like this.
  6. Progressguy

    Progressguy Newcomer

    Hi Jenny,

    One or two additional things that perhaps you could consider is something affecting your bladder/urinary tract that is external, such as something you might be putting in your body. To elaborate, is it possible you have any food or chemical sensitivities that are causing the severe flare ups and paired with anxiety could be really affecting the situation. Anxiety along with sensitivities can cause a build up of inflammation in the body and the bladder/urinary tract is not immune from damage and pain.
    While I may not have the same equipment as you (being a man), I can say for sure that certain foods and beverages cause irritation to my urinary system causing burning, pain, and inflammation. It's just a matter of understanding your triggers.
    Hope this helps.
  7. Sofa

    Sofa Well known member

    Hi Jenny
    I'm not a doctor but I have to think this is in your head, and you can overcome it by doing something to stop thinking about it. The longer you go without thinking about it the better. Worth a try at least. Distraction methods!! Good luck to you Jenny.
  8. kindle123

    kindle123 Peer Supporter

    You will heal. I promise you!

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