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[Joyce]

Sorry you're no further forward Eddie. What a shame, must be quite depressing. How's her spirit?
Can't help with your question about inflammatory bladder disease though.

[Taz2]

Sorry to read this Eddie. Inflammatory Bladder Disease is another name for Interstitial Cystitis. I don't think it is hereditary though. http://www.bladderandbowelfoundation.org/bladder/bladder-problems/painful-bladder-and-interstitial-cystitis-treatments.asp

Reading the info from this site seems to confirm that bladder problems are all part and parcel of PCOS http://www.thesurreyparkclinic.co.uk/polycystic-ovaries.php

The more information you can gather on PCOS the better I think. Have you had a lot of help re this diagnosis?

Taz x

[Eddie]

We have had no support at all, when she was diagnosed with pcos they put her on cerezette which stopped her periods, but said there shouldn't be any pain with it? End of. She also has Joint hyper mobiltiy syndrome which i don't thin has any connection but is really bringing down her spirits.

She is 'going' to Kenya with her school next year and that is her focus, if she didn't have that she would leave school as she's missed so much. However i have to be honest about her health and their jury is still out on whether she will be allowed.

Taz i will look at these links, think i've seen the top one before. Thanks. Eddie. x

Just read the pcos link, Joint pain! Why can't we get this recognised as collective. Breaks my heart watching her go through this. Def not going to be Gran for a long time! Still to busy being a Mum anyway.

[Taz2]

Do you belong to a PCOS forum Eddie? This one is active http://www.patient.co.uk/forums/discuss/browse/polycystic-ovary-syndrome-1732  or there is an organisation called Verity which you have to join but which gives you access to all kinds of info to help deal with PCOS.

Taz x

[Eddie]

Thanks Taz. She's had a look and got some info. We are back to urology in a few weeks. We're following the ic diet and that seems to help. Eddie. X

[Eddie]

So here we are again, since before xmas she has had terrible bladder pain, which has moved to her back and kidneys, she got trimethoprin which did nothing, then three days later she got nitrofurantoin which did nothing, on Thursday doc saw her again and gave her co-amoxiclav and said it should make a difference within a few hours! Guess what? It's done nothing. We have appointment for tomorrow with same doc, and urology on 31st. She needs to find out whats going on.
Eddie. x

[Mrs January]

Hi Eddie

So sorry to hear of the issues you daughter is having. I know of a website WWW. ERIC.Org.uk through work I once did as a School Nurse ...just wondering if they can help you? it is all  about childhood continence and have professionals manning  a help line. They have forums' for young people too...It covers all aspects of toileting so might be useful.


All the best

Mrs January

[Joyce]

What a shame, must have been a pretty Π¶∆Â¥ Christmas for all of you. Hope urology get to the bottom of it. Please let us know how it goes.

[Eddie]

Had a look at the ERIC website, daughter thinks it's mainly about younger people and more on bedwetting.

Back at docs today, new antibiotics, ciprofloxacin, and treatment for kidney stones and back on Thursday to see doc, he doesn't really want to xray because of the risk to her ovaries.
Eddie. x

[CLKD]

What risk to the ovaries .......... 

[Eddie]

Radiation is damaging to the ovaries. CLKD.

Eddie. X

[Taz2]

Wouldn't it be an ultrasound?

Taz 

[Eddie]

Gp said xray, maybe more likely to pick up stones?
She doesn't appear to be any better, so back tomorrow anyway.

Eddie.x

[Eddie]

Update, Saw doc and he decided against xray as 1 it should be with contrast dye, and 2 the appt for urologist was looming, yesterday we saw urologist who said 'interstitial cystitis'! No surprises there then. She has to have another cystoscope done, but this time under general and with distention. She had one 18 mths ago which was meant to be done under general but on the day they changed there minds and we were none the wiser, also the ongoing kidney pain he thinks is referred from bladder. So not genetic but two half sisters with it.
Eddie. x

[Joyce]

Oh heck Eddie, you really aren't much wiser after all that. Something is causing her to be ill. Cystoscopy isn't a pleasant procedure, but at least if it's done under a general they may be able to take time to find the cause of her problem. Poor girl! I had that done many years ago after an ectopic pregnancy, long story, but apart from discomfort afterwards and some bleeding everything was fine. Hope it helps her!