I’ve lived with the unbearable and constant agony of cystitis for 13 YEARS
THERE’S nothing quite like the agony of cystitis to make you feel rotten. Fortunately, it only tends to last a few days. But imagine if that pain never went away, and you were stuck living with it on a daily basis? Stay-at-home mum-of-two Erica Welu, 50, suffers from interstitial cystitis – a life-changing, excruciating bladder […]
THERE’S nothing quite like the agony of cystitis to make you feel rotten.
Fortunately, it only tends to last a few days.
But imagine if that pain never went away, and you were stuck living with it on a daily basis?
Stay-at-home mum-of-two Erica Welu, 50, suffers from interstitial cystitis – a life-changing, excruciating bladder condition without a cure.
Interstitial cystitis (IC) affects around 400,000 people in the UK and 90 per cent of them are women.
Erica tells Healthista that she was only diagnosed with it in 2006 – 20 years after her bladder issues started
In the summer of 1985, I was 16-years-old and had just become sexually active, when I began to get frequent, painful UTIs.
Then, starting in 2005, I started to display all the symptoms of a UTI, but the lab tests would come back normal.
It wasn’t until the autumn of 2006 – more than two decades after my bladder issues started – that I was finally diagnosed with a condition called interstitial cystitis.
I was lucky to eventually talk to a GP who recognised what was happening.
She referred me to a urologist who specialised in the treatment of women and children with urology issues.
At that time, IC was diagnosed by a procedure called cystoscopy – a camera is inserted up the urethra and into bladder to rule out cancer – with hydrodistension (the bladder is filled with fluid to high pressure and then emptied, noting the bladder wall appearance before and after).
They were looking for glomerulations, or bladder hemorrhages.
I was told right away after being diagnosed, that IC had no cure. I was devastated
Erica Welu
My bladder looked like a face full of acne.
I was told right away after being diagnosed, that IC had no cure. I was devastated.
I couldn’t believe I was going to potentially have the symptoms of a bladder infection for the rest of my life with no cure.
Urinary tract infections are a horribly painful condition for most women, and for IC sufferers they are worse yet. No cure and no clear treatment sounded like a life sentence.
Symptoms of interstitial cystitis
It’s thought that around 400,000 Brits live with the agonising condition.
It tends to kick in when people are in their 30s and 40s, and can cause long-term pelvic pain and peeing problems.
Symptoms can include:
- intense pelvic pain (felt below your belly button)
- sudden strong urges to pee
- needing to pee more often than normal
- waking up several times during the night to go to the toilet
The pain may be worse when your bladder is full and may be temporarily relieved when you go to the toilet.
You might also find the pain is worse during periods or after having certain foods or drinks.
The symptoms will often come and go in phases. You may have episodes lasting days, weeks or months where your symptoms improve, followed by times when they’re worse.
Unfortunately, there’s currently no cure for interstitial cystitis and it can be difficult to treat,
Sex with IC
One thing that did suffer was my sex life, because sex was giving me UTIs – even though IC isn’t caused by infection, I would still get infections when I had sex. That made me fearful of what was coming after sex.
I would think, “This isn’t fair, I have to have sex with my husband to make him happy, but I have to sacrifice my health for it”. I never said that to him directly, but I think he knew.
In 2008, I was also diagnosed with a chronic pain condition called clitorodynia, which can cause actual pain during sex.
My pain was confined to the clitoris, but it was unprovoked pain, so it was constant and hurt every time I walked or moved.
My urogynecolgoist saved my sanity by pressuring AGB cream – a compound cream – that I’ve used once a day for the past eleven years.
No cure and no clear treatment sounded like a life sentence
Erica Welu
Diet changes
I probably had a diet soda every day before my diagnosis.
My physical therapist told me that pop could be to blame, due to its high acidity content destroying the bladder lining.
The first major health change I made was completely cutting soda and alcohol out of my diet. More than that, I became the pop Nazi, and refused to let my kids drink fizzy drinks either.
Some experts believe that it’s a good idea to cut out carbonated, alcoholic, and caffeinated beverages when you have IC, but there’s no real diet that works for everyone with the diagnosis – what affects one person badly might not affect another person the same way.
The first diet I tried was the Candida Cleanse, a diet that eliminates sugar and white flour.
Pretty much all I ate for a month or two was meat and vegetables.
There’s no proven connection between any of this and IC, and while it did help my general health, curing my chronic athlete’s foot and helping me lose a tonne of weight, it didn’t help my IC.
Medication
The biggest hurdle I’ve had to overcome is accepting that I need to take medication.
I couldn’t ‘cure’ myself of my IC with nutrition and exercise, it’s not possible for me to treat my condition with just homeopathic remedies. I need medication.
Today, I take high-strength painkillers, allergy medications and antibiotics after having sex.
Treatments which helped me
Gut health
If I have a bad bowel day, I have a bad bladder day – IC goes hand in hand with constipation.
It’s important that, along with my medications, I take something to help constipation, and probiotics to help my gut.
Even though I’m not on a candida diet anymore, I try to avoid sugars and grains, though I’ll cheat once in a while.
I was also recommended by a doctor to take D-Mannose every day, which is a simple sugar meant to keep the bladder free of bacteria.
Exercise
I’m less strict about exercise than about diet – I think of it as a necessary evil.
It’s a regular part of my routine to walk 15,000 steps a day, and I firmly believe it’s helped reduce my chronic pain by keeping me active.
Alternative medicines
I’ve tried countless alternative health methods as well as traditional allopathic or homeopathic methods.
Early on, I tried acupuncture and Chinese herbs, and more recently I’ve started using essential oils. I also take daily Aloe Vera capsules, an unproven way of healing bladder walls.
Erica's top tips for coping with IC
If you think you might have Interstitial Cystitis
- See a urologist or urogynecologist in a city, the bigger city the better. You’ll get more resources and expertise there.
- Keep a bladder diary where you record your symptoms, and take it with you to your doctor’s office
If you’ve been diagnosed
- Become more educated and informed – this will provide empowerment, especially because IC usually isn’t a subject doctors are experts in.
- Join the IC Network and the IC Association, two websites started by women who have the disease that provide resources to IC patients and publish new research. (If you have the other condition mentioned in this article, vulvodynia, you can find resources at The National Vulvodynia Association.)
- Read books – I learn something from every book I read.
- Don’t give up hope
My daughters could have it
There’s no real known cause of IC, and while I believe I could’ve had a genetic predisposition to the disease, I also think that the choices in my life contributed.
This whole ordeal has taught me, more than anything, that I need to teach my daughters about preventive healthcare.
There’s nothing definitive that says IC could be hereditary, but my younger daughter, 18, has been diagnosed with an overactive bladder that started when she was eight.
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My older daughter, who’s 20, has shown no signs of the disease.
My greatest fear is that they will start to get UTIs like I did.
This article first appeared on Healthista
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