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Chronic cystitis - petition

(15 Posts)
SarahLPM Fri 31-Mar-17 15:54:05

PLEASE help us to safeguard the future of the only clinic specialising in treating chronic UTI.

This issue can affect anyone. Although 90% of sufferers are women, men and, increasingly, young kids suffer too. Chronic cystitis means it doesn't go away. Imagine that! And it invariably gets worse without treatment until sufferers lose their jobs, relationships and freedom. A huge proportion of sufferers (like me) are mothers with young children.

This clinic is the only centre in the world that treats chronic UTI's, headed by a doctor who chose to specialise in what is predominantly female problem. A very rare doctor indeed. Please help us to get the clinic re-opened to new NHS patients.

www.mumsnet.com/campaigns/guest-campaigns-march-2017

Thank you!

helenT58 Fri 31-Mar-17 16:33:22

I've signed it. Thank you for fighting for this. Too many women are not taken seriously and live in great discomfort..told there isn't any infection and there's nothing wrong with them. I have a young niece who's had repeat infections and they just don't clear up. We need more clinics like this to change things.

emilyrosie Sat 01-Apr-17 17:49:54

I've suffered with recurrent Utis all my life but in my mid thirties I got a really bad one and it never went away! I suffered terribly for a whole year and by the end of the year sleeping and working were difficult. I was suicidal, 35, single and desperate to start a family but I could not go out much, drink, how was I going to meet anyone?! Luckily after just over a year I found this amazing dr at the clinic at the Whittington and now 4 years later I am SO MUCH better. I have my life back. I have a wonderful partner, gorgeous 2 year old daughter and another one on the way in June. This clinic saved my life and it is so vital that that this unique and pioneering centre keeps going and is open to new patients otherwise it will wither away and cystitis is is not a problem that is going to go away. If anything it will get worse with the ageing population. For too long women have been fobbed off with unnecessary and harmful interventions, told they have an incurable disease like "interstitial cystitis " and then found themselves on a merry go round of treatments which for many makes things worse and for which there is a paucity of scientific evidence! Please help by signing this petition and contact us at www.cutic.co.uk for more info! Rosie x

Creatureofthenight Sat 01-Apr-17 17:55:02

Signed. If anything this clinic should be expanded. No one should be left to deal with these conditions without help.

Iwant2move Sat 01-Apr-17 18:02:46

Signed.

AnnaFiveTowns Sat 01-Apr-17 18:15:22

Recurrent/ chronic cystitis is hellish; so many women suffer and your average GP is too ignorant to be able to help. This is such an important petition.

user1491044585 Sat 01-Apr-17 19:22:05

Thanks for starting this petition. I have been seeing Prof Malone Lee privately as unable to see him on the NHS due to clinic closure. Before finding him I was in a very bad place after being infected with an antibiotic resistant UTI during childbirth and his treatment has started to turn my life around. It is so important that this clinic re opens.

LaurenH1 Mon 03-Apr-17 14:12:06

Yep. This is an important thing. Sign the petition! Professor Malone Lee has turned my friend's life around - she and other people who suffer from chronic UTI deserve to have adequate treatment.

Unfortunately a cranberry juice (vodka optional) simply won't do for women who can't leave the house because of chronic pain caused by UTI (read: evil demons with pitchforks living inside bladder wall) and the professor is the only one who offers solutions that work!

you.38degrees.org.uk/petitions/reopen-the-whittington-luts-clinic-to-new-nhs-patients?source=facebook-share-button&time=1489096188

LaurenCUTIC23 Mon 03-Apr-17 21:50:02

I agree! I have benefited hugely from this clinic and it's absolutely turned my life around!
Chronic cystitis is like being penetrated though all your downstairs holes with burning acid and broken dreams. Professor M-L is a wonderful hard-working doctor and researcher who can treat it and whose clinic is the only one of its kind in the country. He has brought many people - including me - back from the brink of living in a bin full of pain, piss and tears. What's that? No actually he hasn't been knighted and his clinic is currently being prevented from treating NHS patients and is under severe threat of closing to private patients too, so please sign the petition!

you.38degrees.org.uk/petitions/reopen-the-whittington-luts-clinic-to-new-nhs-patients?source=facebook-share-button&time=1489096188

SarahLPM Tue 04-Apr-17 14:37:35

Thanks to all who have supported us so far. Help us spread the word! Unfortunately not everyone realises how serious UTIs can be... especially those that don't go away.

ECH1 Thu 06-Apr-17 17:51:24

At the moment the Professor is the only doctor out there who is willing to take people with this condition and treat them in a way that will cure them and give them their lives back. He is being prevented from treating new patients on the NHS. The Professor is aware that long term use of antibiotics is not ideal and is doing an enormous amount of research into finding an alternative but until then long term antibiotics are the only thing that can cure this crippling disease.
The NHS is happy to throw long term antibiotics at other diseases, so why not this one? Is it because it is a mainly female problem and as such isn't "trendy" or PC? Please, please, please sign this petition.

PossumInAPearTree Thu 06-Apr-17 17:53:28

Have signed. I've been under treatment with Prof for three years. Am hoping he cures me soon!

Regressionconfession Thu 06-Apr-17 18:05:06

Signed. I can never understand how they can put a man on the moon and perform brain surgery yet women's health falls behind! Thanks for campaigning for this issue.

SarahLPM Thu 06-Apr-17 20:15:20

If anyone here is a Prof M-L patient or has chronic cystitis, you might like to visit the CUTIC website (cutic.co.uk). The campaign has been created by sufferers and its aims are to improve testing for UTI (current tests miss up to 80% of infections, one of the reasons chronic UTIs are becoming more of a problem. We're doing lots of other things, including fighting for the future of the LUTS clinic, so do sign up if you're interested. And a HUGE thank you for signing the petition. It's hard to get the message out to people who have never suffered, that this horrid condition can strike anyone at anytime and it ain't cured by drinking cranberry juice! And this is the ONLY place - at the moment - that sufferers can turn to for treatment, which in itself is not easy... this is why we need the clinic's research to continue.

SandyMumsnet (MNHQ) Thu 13-Apr-17 10:59:10

Hi everyone,
We're just moving this thread over to our petitions noticeboard. Thanks flowers

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