Coping With Interstitial Cystitis

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Interstitial cystitis (IC)

Interstitial cystitis is a poorly understood bladder condition that causes long-term pelvic pain and problems with urination.

It’s also known as “painful bladder syndrome” or “bladder pain syndrome”.

The condition tends to first affect people in their 30s and 40s, and is much more common in women than men.

It can have a significant impact on your lifestyle, work, emotional health and relationships, but a number of different treatments can be tried to help relieve the symptoms.

I wanted to share how I coped with having Interstitial cystitis (IC) at it’s worse. It is such a misunderstood condition that affects mainly women but also can occur in men and children. I only can find ratings in the US being an estimated 700,000 to 1 million Americans currently suffering from the disease. I unfortunately can’t find any UK figures which does show how this disorder is almost unheard of by many including myself before I become very poorly with it.

It was back in April/May 2012 I started to feel really ill. I had always suffered from Urine infections and from this I felt very run down physically and mentally. I used to feel very low at times and couldn’t quite understand why, yes my lifestyle and work may have added to this but I was really struggling and it just got worse. I didn’t help myself to be honest; I worked hard and tried to work through it. My work was my life and being away almost every weekend working with much stress on my shoulders it really did spiral. I can remember not being able to stand for long without rushing to the toilet and I was in so much pain, I couldn’t sleep, I felt almost poisoned. Each morning I would get up hunched over because the pain just got worse. I worked, worked and worked and I didn’t even realise how ill I was becoming which only made me feel like I was being a complete hypochondriac as I am a very proud person.

My moods were so low, I felt like I was going insane. I went to the doctors 4-5 times, they kept giving me antibiotics. I remember sat there one day sweating so much my clothes were damp and still….’oh you just need antibiotics give them another 3 days’ it made me feel so stupid I knew in myself something wasn’t right. I was walking around in a daze the majority of the time and I was completely drained. This went on for around 2 weeks, to the point I couldn’t stand, I was lying soaked through from sweat and it was at that point I new I was very ill. I was rushed to hospital and seen straight away. My ‘infection’ had gone to my liver. I was yellow and couldn’t move. The doctor at the hospital told me that the toxins in my body were at an extremely high level. Luckily I went in when I did. I spent 5 days in hospital whilst they stabled my condition and was discharged without an actual diagnosis. I knew I still wasn’t right, I could feel it. I luckily had private health care and was referred to a specialist and she was my savior. I spent a couple weeks going for tests and treatment. One of my kidneys was extremely scarred, she really didn’t want to remove it however if it was going to keep making me this ill with infections it may have had to of been an option. This was not the case fortunately the treatment of Bladder Instillations worked. This was offer a 2 month period but it fixed me. It took time, a year or so to get myself back. I had to change my diet, which was scary to begin with, but anything to get me better and now its just second nature to me.

A strange sign is cold sores, I suffered with these so bad, for years right back to when I was 7/8, since my treatment, touch wood, I haven’t suffered with one.

My moods changed I become happier, and more in control of my life, mainly because I knew what was wrong with me and I know longer felt silly for complaining about being ill all of the time. I leant my way around the disorder and cope with it now. I have however put work and stresses first before my health since but this year I want to change this and concentrate on managing life more, being happy and more importantly being healthy.

Please, please if you feel you suffer from urine infections on a regular basis, if you feel like your body feels almost toxic, you feel low, depressed and generally ill more times than not speak with your doctor. Don’t feel silly, and if you’re like me and put work before your health, stop….take time to get yourself better. I am far from a hypochondriac, I am my own worse enemy with this at times, but if you feel in yourself you really are not right, don’t let it get to the point that I did, it’s a very dangerous situation to leave yourself in. I do feel that there needs to be more understanding about this disorder in the UK.

Take care of your health, that’s number 1

Sarah

Xx

Here are some links to gain a little more understanding of interstitial cystitis

https://www.kidney.org/atoz/content/interstitial

https://www.sharecare.com/health/kidney-disease-urology/what-cause-kidney-scarring

http://www.amazon.com/The-Interstitial-Cystitis-Survival-Guide/dp/1572242108

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