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Please help - IC/PBS advice wanted...

Posted , 4 users are following.

EF86
EF86

For the past 6 years I've been suffering with intermittent pelvic pain - thought to relate to my bladder - and intense urethral burning.

I've seen (and am still under the care of) a urologist and gynaecologist. I was diagnosed with endometriosis and this was managed with laser therapy under general anaesthetic - which i've undergone 3 times - and the combined pill. This seemingly 'fixed' me for a little while but unfortunately my symptoms have recurred. 

For the past 18 months approximately, I've experienced varying periods (minutes - days) of intense urethral burning/stinging and a tender abdomen. I feel bloated and 'doughy' in my lower abdominal area but am not bloated to look at. My urethra (I perceive it to be anyway) also spasm uncontrollably at times.

I can't identify any specific trigger for the pain.

It never hurts to urinate - in fact sometimes when my symptoms are really bad the act of urinating actually aids the discomfort. I don't have increased urge or frequency either...

I had a vast array of extensive tests and procedures and, following the most recent cystoscopy and biopsy, have been diagnosed with IC/painful bladder syndrome - a name which I'm sure you will agree, does NOT do the discomfort justice!

Ive trialled a long course of ABs and ranitidine/cimetidine to no avail. Im on daily pregabalin and am taking tramadol and ibuprofen like it's going out of fashion! It doesn't help the pain though. I also take an over the counter solution designed to help with cystitis by altering bladder pH.

I've recently been having weekly instillations of a substance into my bladder but have not noticed an improvement. Has anyone had this done? How long did it take for you to notice an improvement?

I'm losing the will to live!!!

I'm struggling to work since the pain keeps me awake at night. I feel very low and alone. I'm also reluctant to leave the house - I feel quite panicked if I don't have my bag of pills with me incase the pain starts when I'm out. All in all, it is ruining my life at present.

I'm open to any thoughts and suggestions....what has worked for you? Everything I've trie to date has failed to bring about an improvement.

Please help!

Thank you in advance smile

1 like, 20 replies

20 Replies

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  • holly_12500
    holly_12500 EF86

    Posted

    I know just how you feel ,had every test going.

    With no help at all.I was transferred to a gynecologist had bladder repair and put on 3 different antibiotics at night for 6 months now I take one antibiotic every day. It works.

    Every water sample I had tested came back negative ,no one seamed to listen to me untill I had app with gynecologist ,who was so understanding.

    I wonder if cystitis can run in familly. My grandmother,mother and now my daughter all suffer with cystitas..holly

  • holly_12500
    holly_12500 EF86

    Posted

    I forgot to say I take amitriptoline at night

    Also help with pain and sleep.

    I take cystopurin or something like it.

    I found dhidrocodine and paracetamol good for pain.

    Over the last 20 years I have tried every diet going and found too much sugar or spicy foods can cause me cystitis.

    Even though I haven't had infections all the time I was given antibiotics.

    Taking 1 day help keep me from getting it now.

    Getting someone to understand how bad and painful it is as been my problem...holly

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