Update 10.07.2010
Well, I have some hospital dates at last. My pre-op is next week, and my operation is in late August. So just under two months to wait. This last week has been very bad for me so I hope the remaining weeks aren’t.
I realise I haven’t given an overview of my symptoms beforehand, that have made this operation necessary. I’m not going to give a definition of IC, there are a lot of other websites that go into that. Also, everyone is different.
In summary there are:
· Severe pelvic pain
· Frequency
· Urgency
· Nocturia
· Urethral Stricture
· Spasms
General Overview
I had bladder problems as a child, I’ve always had to get up during the night, and at school I was always going to the loo between every lesson. It started to worsen when I went to university 9 years ago. I was getting up 3 – 5 times a night, and forever nipping to the loo between lectures. I started to notice it was much worse if I’d been drinking alcohol and coffee (pretty much student staples at the time!). The pain started in earnest in 2004, where it went from mild to severe in a matter of months. It was then I started having problems passing urine.
In January 2005 I was visiting family, and I couldn’t pass urine at all. It was agony. My Dad drove me to A&E where they did nothing for 2 hours. A very condescending nurse said I looked better and should go home soon, despite me only passing a tiny amount and having a swollen belly; if she’s been within arm’s reach I would have punched her in the face! I was in so much pain. To my relief, nasty nurse clocked off and a very nice nurse came in, and when I asked her to catheterise me she did, and over a litre came out. A very blood tinged litre I will add. It was the same colour as Rose wine! I was sent home after, but they expected me back in, which happened about 4 hours later and I was in hospital for a week. From this point on I have had to self catheterise. That’s when all the “fun” started with the 3 hospital trusts I went through.
I have tried acupuncture (NHS), a chiropractor, TENS machine, DMSO, and Cystistat & Elmiron
· The acupuncture worked for 8 weeks (one session per week), but my symptoms were deemed too severe for acupuncture to work on its own. I was lucky as it was on the NHS. I went in originally for pelvic floor muscle training with a physiotherapist. She said if anything I needed the opposite as the muscles were always tensed up.
· I went to see a chiropractor due to a problem with my lower back. However I noticed after every session, my symptoms improved slightly for a few days. I’m guessing it’s because there is such a concentration of nerves running through there, that when one thing is corrected it was a knock on effect.
· I bought a high spec TENS machine, and it does help a little. I found that if I put the four pads on certain points on my lower back, it lessened the pain. I don’t think it would work purely on its own, but in combination of other treatments it can take the pain down a notch.
· DMSO was a nightmare. I only had two treatments and ended up in A&E after both of them. Although I have a friend with IC that also had DMSO and it works brilliantly for her. It’s strange that people with the same disease react differently to different treatments.
· Cystistat was my saving grace for 18 months. I had it fortnightly, although I did have a 6 month break in the middle. Although I still suffered all the symptoms, and I’d say I averaged a 5 on the pain scale, it kept it to a point where I could carry on working. I could only keep it in for 30 minutes, and I was in agony the day of the treatment, but by the next morning I was okay.
· Elmiron was a tablet version of Cystistat, but your body only absorbs up to 6% of the dose, so it takes several months to become effective. I took this whilst also having Cystistat instillations.
This doesn’t sound like a lot, but bearing in mind I had to wait 6 months between consultant appointments which only last about 5 minutes each, this explains the timescale.
Medication
I am currently on the following medication:
· Amitriptyline 50mg –in this dose it targets nerve pain and chronic pain, although it’s also used as an anti-depressant in higher doses
· Cimetidine 400mg (twice daily) – although it’s primary use is for stomach ulcers, it is helpful for IC sufferers due to its antihistamine effects
· Gapapentin 300mg (three times daily) originally used for the treatment of epilepsy, gabapentin is also widely used to relieve pain, especially neuropathic pain.
· Tramadol 400mg (twice daily) – used to treat moderate to moderately severe pain
· Solifenacin Succinate 5 mg twice daily to relieve bladder spasms.
Diagnosis
I went through many tests to be finally diagnosed with IC officially. They were:
· 1. Bladder distension under local anaesthesia– failed due to severity of pain
· 2. Cystoscopy under LA
· 3. Three bladder distensions and cystoscopies under GA
· 4. Five bladder biopsies taken during one cystoscopy
· 5. Urodynamics
6. Potassium sensitivity test - the result of which finally gave an official diagnosis of IC.
Coping strategies
Well, I have a fiancé with the mental age of an eight year old, so he keeps me entertained, and cheers me up if I’m feeling down!
The main ones are the pain medication, TENS machine and a hot water bottle (although with some people ice or a cold flannel helps more).
Cutting out all the trigger foods, basically anything acidic. In particular: tomatoes, all fruit and spicy food.
Unfortunately, I’m sensitive to NSAIDS which are anti-inflammatories such as Ibroprofen which are such a big help to others.
Giving yourself a distraction from the pain, having a hobby. For instance I bake a lot of cakes. And eat them. I’m good at eating :-)
A hot bath (BUT NO BUBBLE BATH!) helps too.
Also having the message boards on the net and talking to others with IC. Facebook is other big one! Where I can’t get out the house it’s my window to the world!
And finally, the support of my family and friends. You can’t cope with something like this on your own.
As I say, my pre-op is in a few days so I will blog afterwards.
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