A close cousin to OZ

[Nics]

Im a New Zealander with IC. Are there any others in here. If not would it be OK to hang out with our close cousins the Australians.

[andcohen]

Hi nics :welcome: I am glad you have found this site, it has been a life saver to many of us, as I am sure all would agree. We will welcome you to take part in any of our little Aussie discussions at any time & feel free to ask any questions or give any advice, we are all here with open minds when it comes to IC.... I don't recall seeing any others on here, but thats not to say there isn't for sure. Maybey Jill or Donna may have a better idea.
Don't be afraid of asking anyone from anywhere any questions, as alot of the time they are more informed on IC than what we are in Australia. WE are just 1 big IC family ready to help where we can.
OK this will be short & sweet tonight as I am ready for bed. But I will get back to you regarding a medication my DR was telling me about but it was only available in New Zealend ( forget the name at the minute ) I will see if you know of it.
Next time we talk I will do a more formal intro of myself. Feel free to go to the Aussie boards & into yourself, I'm sure you will receive a warm welcome, they are a great group of girls.
Talk to you later
Andrea. :flower: :flower:

[Rosalie]

Hello Nics
Nice to meet you, you have come to the right place. Although still undiagnosed, this site is where I finally found answers to years of questions and frustrations. I woud be interested to hear your story and find out what the medicos are like in NZ with regards to their understanding of IC and also what medications are available to you.
Rosalie

[deviation72]

Hi Nics,

Welcome to the little Aussie IC group! If you know any other NZ lads and lassies with IC, tell 'em they are also welcome here... :)

Maybe we should ask Jill to change the name of the board to Australia and New Zealand? Or even Australia, NZ and the Pacific?

Like Rosalie, I'd also be interested in hearing your story. I wonder what similarities and differences there are between the NZ health system and here?

Hope everyone is well!

[Nics]

Hi

Thanks for the welcome. It is so nice to be able to talk to others with our condition. I am a member of the support group here in NZ. We have a wonderful group but I am the youngest by a long shot.

I was diagnosed when I was 25 but have had pain since I was 9. For many years my mother was told that it was stress that was giving me pain. It was very intermitant and I was fine for months and then would get the pain. Now I know it was a flare but back then I was a hypocondriac. By the time I was 19 it was suspected that I had endometriosis so they tested me for it and it wasnt the problem. When I was 25 I collapsed at work one day and was rushed to a local GP who found blood in my urine and thought I was passing kidney stones so they called an ambulance. I was finally diagnosed that year.

I was then in the hospital system under a urologist. He couldnt operate and fix things so he treated me horribly. He started me on DMSO for it. I ended up in hospital after the third dose for three weeks. He told me I was being stupid and had no reason for being there. He then put me on a heap of drugs. They worked for a while but then they stopped. This was the beginning of a trend for me.

I managed to get rid of the specialist and get myself another who has done nothing but fight for me for the last few years and is fantastic.

I have had two children in the last couple of years. My first pregnancy I was in and out of hospital 5 or 6 times with flares. When my wee girl arrived she was 5 weeks early. My pain then went away for about 6 months. I was so pleased. I then fell pregnant with my son in Oct last year. By January I was in and out of hospital with flares. By the time I was 20 weeks I was told that I had to take morphine full time or lose my baby as the pain and the spasms where putting me into labour. By April I was in hospital fulltime. In the end I spend 6 months in hospital only being allowed home for hours at a time. I am still on high doses of morphine now as we have been unable to get on top of the pain. I burn from my knees to just under by breasts with sharp pains across the bottom of my stomach and down my urethra, vagina and backside. It also feels as though someone is pinching my urethra with pliers. I am also incontenant and have being wearing incontenance pads for about 4 years.

While I was pregnant I also managed to pass a fully inflated bulb from a catheter down my urethra and that hasnt been the same since.

I am lucky that I have a GP who although she knew nothing about my condition she is prepared to learn and will tell me when it is too big for her and tells me to see my specialist. But I have been treated llike a drug seeker by staff in A and E. I have been refused medication in emergency because I have been in too much.

I have been in a permanent flare now for almost a year. No end in site and my pain is getting worse by the day. Am trying new stuff all the time but so far no good.

Any ideas
Nic