Coping with Interstitial Cystitis

When I was younger, I had no problems in this area whatsoever and I can only think that age and childbirth has aggravated the condition to the 9th degree.

Here I will be publishing my experiences with IC and continual attacks of Cystitis in the hope that I may help others with the same condition.

Please do leave your own personal stories in the feedback section at the bottom of this lens. I would love to hear from you!



Women's Health At InfoZED

For the early part of my life, I did everything I knew I had to do to avoid Cystitis and it worked:

- I urinated before and after sex, in fact this was a must for me. I couldn't consider having sex with anything less than an empty bladder.
- I wiped from front to back.
- I avoided tight, restrictive clothing.
- I washed myself with non-perfumed soaps and hypo-allergenic body washes.

But, when I hit 30+ then my troubles began.

I suddenly started to experience continual attacks of Cystitis.

So, what had changed?

Apart from growing older nothing had altered in my life:

- I was not under any stress
- I still followed the above rules to keep myself clean and clear from infection.

But I was experiencing more and more attacks of cystitis than ever before.

It was miserable; I was miserable. That endless cycle of pain, antibiotics, thrush and then anti-fungal treatment knocked me out for weeks at a time. No sex, no pleasure. Nothing.

As soon as I finished one cycle, it would start all over again.

Until it turned out I wasn't always infected...

But the symptoms were the same! How could I not be?

Interstitial Cystitis is just that: Non-infectious Cystitis or Painful Bladder Syndrome.

However, antibiotics were no good here for treatment. It wouldn't help with the pain, the inconvenience or the misery

That was one episode, a couple of years ago, that took me months to get over. Now, it's happening all over again.

At the time of the first episode I was referred for surgery to widen my urethra as it was thought that it was sticking together and giving me the symptoms I was experiencing.

But, I chickened out.

This time round, I was referred for a Uro-Dynamics Study.

Basically, a Urodynamic Study is designed to test to see how my bladder behaves as it fills and empties.

I shall be questioned about my problems with my bladder, then the test will be explained to me in detail and I will be asked if I have any questions, which I won't have because I never do.

Before they start this test, I will need to have a full bladder. I will then need to pass urine in a special toilet (in private, thank goodness!) so that they can record the flow of urine. I suppose, to check to see if its continual, spluttery, consistent and if the bladder empties completely.

I will then need to undress from the waist down and lie down on a couch.

The Doctor will then pass a fine tube (ouch!) into the bladder and another into the rectum. I hope they don't inject air into my back passage because that will hurt! My past experiences with tubes up my no-no (back passage) were far from pleasant :(

These tubes are then connected to a special machine which will measure the pressure in the bladder.

The bladder will then be filled with sterile saline solution and I will need to say what I feel when my bladder is full. 'Ouch', springs to mind here again.

It says on this information leaflet that I will be in complete control, which somehow I doubt! I don't have that good control over my bladder function at the best of times.

This is the worst bit...

With a full bladder, I will then be asked to stand up and cough.

Then I can empty the bladder and get dressed when my test results will be explained to me.

So, something to look forward to...

It's now the day after my Urodynamics Studies and I was worrying about nothing. Basically, I hadn't had an ultrascan which I was suppose to have had before this study, so I wasn't even in there for very long.

Stupidly, I didn't have a full bladder although I drank enough beforehand. It was enough, however, to discover that during an ultrascan, I am not emptying my bladder completely when I urinate. This is the cause of the continual cystitis problems I have been suffering from. Pooling urine = non-adequate voidance = not flushing out toxins or stale urine. Nice.

On a scale of 1 to 5 (5 being the strongest), my muscle strength is a 2.

However, it doesn't explain why I am suffering from continual bouts of IC.

I will be sent an appointment for Pelvic Floor Exercises (or to be taught them; I hope they give me one of these things I can insert inside...) and another appointment to have a check up whereas this time I have to make sure I have a full bladder so that they can measure my flow.

Pelvic Floor Exercises:

Whilst standing, preferably, contract and relax pelvic floor muscle, 10 short and 10 long, 3 times a day.

I must build on this as much as I can. Note to self: I will have to get back to clenching as personal circumstances interrupted my routine and I'm now back to square one with my exercises.

Next appointment: May

On my second appointment to the Uro-Gynaecology department I was again instructed to have a full bladder which I did so. However, despite waiting for 1 hour and 30 minutes and watching all of my clinic leaving and the next clinic arriving, I subsequently walked out of my appointment. I hadn't been seen at my allotted appointment time and considering I had a bladder problems in the first place, to expect to wait over an hour and a half with a full bladder was bordering on cruel. Therefore I walked out and fully intend to complain to the manager of that department.

1 - Drink a lot of fluids:

This is something I admit to having a lot of trouble doing. Sometimes I have difficulty shaking off an infection because I don't drink enough to flush the toxins out. For Cystitis drink Cranberry juice or plain water.

2 - When the pain is really intolerable, do take painkillers:

I take Paracetamol or Solphadeine Max to ease the pain. They help a lot.

3- Use heatpads:

I have a Handwarmer which can be used for aches and pains and a herbal heatpad which can be heated up in the Microwave. The Handwarmer has to be boiled.

4 - Read success stories from other female sufferers.

They could give you hope and they may provide additional resources you can try to help relieve or cure this condition.

5 - I know it sounds funny but what does help a lot with the pain is sitting on the toilet or a bowl.

I've even contemplated buying a potty...It keeps the urethra open thereby relieving the discomfort. This is especially good if your IC is caused by the walls of the urethra sticking together.