Will UK Residence Help Me?

Hello all,

In January of this year I had my entire life ruined overnight when I suddenly developed severe pain and urinary urgency which wasn't relieved with urinating. My symptoms were present 24/7 and didn't improve for many months. Constant pain and severe sleep deprivation left me feeling suicidal. Doctor after Doctor offered me no relief, no diagnosis, nothing. I was palmed off with so many courses of antibiotic, even when no bacteria was found at all. I told them my symptoms had started after drinking alcohol and they all told me that this would not have anything to do with my pain. They were wrong. I have Interstitial Cystitis (IC) otherwise know as Bladder Pain Syndrome (BPS). It is not that rare. Doctors should have recognised this. But they didn't.

400,000 people in the UK have IC. There are millions with the disease all over the world. Men, women and even children contrary to what the NHS website says about Interstitial only affecting middle aged women. I am 18 years old and have found that there are many other young women suffering as I have suffered. It took me many months to find a Doctor who understood my condition and I had to fight hard to get treatment on the NHS under his care. I don't want other people to go through what I have been through, so I am asking for your help.

Whether you are a sufferer of IC or not, you can help to raise awareness of this illness. I am going to ask my GP surgery if all the Doctors at that practise can be educated about the disease. I would also like to open a Government campaign which calls for the changing of the NHS website to have accurate information about the disease and who it affects. At present the site says that IC only affects one demographic of people which is false. Furthermore, the site also says that people's quality of life is very negatively affected and that people's relationships will suffer meaning that after fighting constant pain for many months and finally getting a diagnosis a person will then read the NHS information and be lead to believe that their life is over. That they have nothing to live for. The NHS site also fails to list many of the lifestyle changes and treatments which can treat Interstitial Cystitis.

The real facts about IC:

-It is a chronic illness

-Both men and women over the age of 12 are affected.

-IC is not fully understood but there are many theories such as that it is autoimmune, that the mast cells are overactive in the bladder, that sufferers don't produce enough of the protein needed to build the bladder lining and other theories.

-5-10% sufferers have Hunner's ulcers which can be treated with steroid injections.

-IC flare ups can last for days, weeks and even months at a time.

-Triggers can be diet (alcohol, caffeine, citrus, tomato, chocolate, raw onion in salads etc, artificial sweeteners and other triggers.) Smoking can also trigger IC.

-There are many, many, MANY treatments for IC if diet restrictions alone do not work. Instillations, oral drugs, nerve blocks, and botox. If these treatments fail in the most severe cases then a new bladder can be fashioned from the intestines in an operation and this is an option.

I am hoping that at least five people will help me to set up a Government petition (I will need your emails) in which I will request more funding be given to research into IC as well as treatment for those dealing with the painful flares caused by IC. I am also hoping that some of you lovely people will join me in informing local GPs about this illness that affects so many. I am also going to contact the NHS and demand they update their website so that the information about Interstitial Cystitis is more accurate. I want people in the future to visit that page and find HOPE. Because people get through flares and enjoy their lives with a newfound appreciation. If anyone has information about how to contact the NHS I would be most grateful.

THANK YOU <3

[Konagirl60]

I do not have IC but I know how much it hurts and affects a sufferer 24/7. Have you been offered Hydroxizine Hydrochloride? I believe it works to suppress mast cells.