Living with recurrent or chronic UTI - guest blog by CUTIC

By Carolyn Andrew, Director at Chronic Urinary Tract Infection Campaign (CUTIC)

If you’ve ever had a UTI (urinary tract infection), you’ll know how horrific the symptoms can be – desperate to pee all the time, only just making it to the loo, feeling like you’re peeing glass shards, pain radiating into your lower abdomen and back.

Right now, there are millions of people worldwide suffering the symptoms of a UTI. For some, a three-day course of antibiotics will clear it up quickly and they can forget all about it. But sadly, for others, it will develop into a long-term, debilitating condition.

There are actually three types of UTI

There’s the acute, uncomplicated UTI which responds to a short course of antibiotics and the woman can then forget all about it and get on with her life. Pharmacists can now prescribe 3 days of antibiotics for this type of UTI.

Then there’s the recurrent UTI which comes back up to 3 times a year, or twice in 6 months.  This one is a bit trickier to treat and needs a doctor as the short courses just don’t clear it up. The sufferer gets a few months respite between attacks and might be put on low dose antibiotics to try to keep it at bay.

The last type is the chronic UTI. A chronic UTI is an ongoing, permanent infection, and it causes constant, often severe symptoms. You might find yourself visiting your GP over and over as the symptoms just don’t go away, in many cases, frustratingly being told that your UTI test is ‘negative’ or ‘no infection detected.’

Why is this?

The current UTI test is over 70 years old and is based on the belief that the bladder was sterile; a theory now known to be incorrect as a normal bladder contains around 500 bacteria. The test looks for just one bacteria type in a high level, but the reality is a UTI can be caused by a combination of lots of bacteria. If the test doesn’t find the one bacteria it’s able to detect, the results show negative for an infection – even if someone is suffering from agonising symptoms.

Some private labs can identify all bacteria present but these tests are expensive.

‘It’s all in your head’

Chronic UTI predominantly affects females, and if you’re approaching menopause, you may find that UTIs visit you more often, with women over 65 more likely to suffer UTIs on a regular basis than at any other time in their lives.

Despite this, health care providers don’t seem to really have an answer. Gaslighting is common, with women being told: ‘it’s all in your head’; ‘you must have depression’; ‘it’s just something women have to learn to live with.’  You might call it another example of health inequality for women – and it’s why the Chronic UTI Campaign is pushing for the Government’s Women’s Health Strategy to include specific research into chronic UTIs.

7 of my personal tips for managing UTIs

I’ve lived with chronic UTI for over nine years and although I’ve been in remission now for five years, I still get flare ups and have to find ways to manage them.  Here are seven tips I’ve picked up over the years, plus links to some useful websites and support groups.

It’s important to remember that these are lifestyle rather than medical tips, and that we’re all different and what works for one person might not help others.

1. Try drinking beer

It’s believed that hops have an anti-inflammatory effect. Drinking beer won’t clear an infection, but it can help to relieve symptoms by reducing the inflammation in the bladder. Stick to alcohol-free beer though, as some people find alcohol irritates their bladder.  Hundreds of women find this works for them as temporary relief.

2. Chinese herbs

Chinese herbal treatments can provide relief for UTI symptoms. It’s really important to ensure these are prescribed specifically for you by a qualified Chinese herbalist with previous experience in treating UTIs with herbs.

3. Topida Intimate Hygiene Wash

Using Topida Intimate Hygiene Wash helps to maintain the pH balance around the urethral entrance. It’s mild, contains no harsh synthetic ingredients and is recommended by some chronic UTI specialists. There’s also Topida Intimate Hygiene Spray which contains all natural ingredients including tea tree oil which helps keep the area germ free. These products can also help ease vaginal discomfort for post-menopausal women.

4. D-mannose

Lots of advice pages suggest drinking cranberry juice – but there is no evidence that this will help you at all. The active ingredient in cranberries is a natural sugar called d-mannose.  This has the potential to cling onto e-coli bacteria and help expel them from the body.  You can buy d-mannose online in tablet or powder form. Don’t waste money on more expensive d-mannose products containing additional cranberries and vitamins.

5. Never hold your pee!

By holding onto urine in your bladder, any bacteria there will have time to multiply and even to burrow into the bladder wall and become embedded. There’s a great free app called Toilet Finder which works all over Europe.

6. Avoid spicy food and alcohol

This is especially true if you’re having a UTI symptom flare. Test out what sets your symptoms off and try to avoid it.

7. Wash before and after sex

It’s a good idea to wash before and after sex if it tends to trigger your symptoms. Women are sometimes advised to take an antibiotic after sex as a precaution. Partners should also wash first to reduce any possibility of passing on an infection.

Getting help and support

Chronic UTIs nearly always start as the uncomplicated type, before progressing to become recurrent and eventually chronic. If you’re suffering, there are several informative, helpful support groups for men, women, and children.

Furthermore, a brand new podcast on Chronic UTI has just launched, which you can listen to here. "Join host Verity de Cala as we uncover the hidden world of Chronic Urinary Tract Infections (CUTI), exploring the stories, the science and culture that surrounds the illness."