12 years undiagnosed

Hi guys, I'm 23 years old (turned 23 yesterday actually!) and have been suffering with chronic pain since I was 11. I have UTIs every few weeks, but also have the symptoms of a UTI at all times. The pain is worse when doing certain things but mainly random.

I've been tested for kidney stones, endometriosis, polycystic ovaries, reflux and god knows what else.

I'm currently taking low dose nitrofurantoin daily, codeine phosphate as and when, and have in the past tried oxybutinin and cranberry tablets.

Any advice would be great, I'm at a total loss and feel very alone!

6 Replies

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  • First of all, happy birthay. 😊. Have you had any proper treatments and tests for infections and bacterias, yeast, fungus, viruses?

  • Hello that's how my pelvic pain all started!I had the symtomes of a UTI and of a vaginal infection!

    Constantly I was in pain and no doctor could diagnose something ,I ve been seen by urologists and gynaicologist but always the test are negative.I was lost too...Changed my life and I feel antisocial.But with the time I think I managed to control the pain,but it's still there!

    Try to douche with camomile and wash outside as well,for me it was the only thing that made a difference although I had no infections.

    As well I avoid pool and chemicals and staying at the sun with a bikini.

    That's what's working for me

    And as well I know it sounds hard and I know it is try to forget the pain.Wake up each morning try to feel more positive!

    Am trying this my self!

  • I had an infection with chlamydia and ureaplasma and it really ruined my life now. Doctors cannot find anything wrong now and all the tests that I do are normal. And one of the theories that some experts think is that these bacterias can be resistant and can cause an autoimmune reactions in the body, especially chlamydia. Chlamydia in certain cases acts like a virus and has a form called "cryptic stage", which means that no tests can diagnose it. And I am a 22 years old boy who is diagnosed with prostatitis/urethritis/cystitis/chronic pelvic pain syndrome and it pretty ruined my life.

  • WOW! I've been in pain for 10 years with constant pelvic floor spasm/Chronic Pain Syndrome and haven't found relief, but I'm 64.......you are too young to be living this way. I am so sorry to hear of your struggles.

    Before the pelvic floor problems started, I had several years with lots of bladder discomfort and found this site for Interstitial Cystitis. Some of your symptoms sound similar. I don't know if any of your doctors suspected this as a possibility.

    Here's a link (there are lots of sites available online now)

    Maybe you can find something to help here. I pray that you do. God Bless You!

    You are so right..........trying to keep a good spirit and focusing on the good things in life help keep us going. Also, there is so much hope because of forums like this and all of the continuing awareness of these problems that have fallen between the cracks before.

    ic-network.com/conditions/i...

    Here is another website I just started exploring. Lots of info about techniques to help deal with pain.

    Back in Control..taking charge of your Chronic Pain Treatment

    drdavidhanscom.com/

  • Holistic Healing from Interstitial Cystitis and other Chronic Illnesses

  • Has anyone talked with you about the possibility of having Intersticial Cystitis??? It is inflammation of the urinary tract. I thought I had chronic UTI's until I was finally told about this. Doctors were constantly giving me antibiotics because the quick test they do at the doctors office isn't always accurate in diagnosing UTI. They need to send it out for a culture to know for sure which takes a few days. Have you seen a urologist? Don't let your regular physician be the one diagnosing and treating you for this. Also, the recommendations to treat Intersticial cystitis is very different than for UTI. For example, you would want to totally avoid cranberry pills for I.C. because acidic things make the symptoms worse. Do some research if you haven't already on this.

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