Frequently Asked Questions

Q. When should I get a referral for a specialist?
If you have been to your GP more than three times with suspected bladder infections, only to be told no infection is present, then it's recommended you ask your GP for a referral. 

Q. Am I imagining the pain?
No, PBS is a recognised condition. People with PBS have visible changes to their bladder linings which can be seen in cystoscopies.

Q. How can my friends and family support me?
It's important for people close to you to understand and accept your condition. They need to know that sometimes you might have a 'low day' when you are feeling particularly sore, and that you may need to change your schedule.  

Q. Can I still travel?
Yes! For any trips, plan ahead, and know where your toilet and drink stops are. 
If you're travelling on aircraft, tell your airline about your condition. They can ensure you have an aisle seat near the bathroom.
When travelling by car, it can be useful to place a cushion under your bottom and feet to dispel engine vibrations which can cause discomfort.
Travelling tips and advice are often discussed by NZPBSG members when they get together.   

Q. Is pain relief necessary with the bladder instillation treatments?
DMSO can cause irritation to the bladder lining so it is advisable to take paracetamol prior to treatment, and afterwards if necessary. The discomfort usually decreases with subsequent treatments.

Q. How much do bladder instillations cost?
They are usually done at the public hospital and cost nothing. Some urologists may offer the service at their private rooms and in this case there will be a cost which will include the medication and the procedure. 

Q.  Can I do bladder instillation treatments myself?
Yes you can. If you feel comfortable with this option, a nurse will teach you to self-catheterise and how to safely instill the medications. Many people with PBS find this process quite straight forward.

Q. Can I still have a sex life?
Absolutely - it is a matter of managing around the pain. You may need to try different positions that apply less pressure to the area, empty your bladder first, and use lubricant. Overall, it is essential for your partner to understand, and have knowledge of your condition.