anyone in halifax area of NS?

[StephN]

Hi,
I'm looking for anyone in the Halifax area of Nova Scotia diagonsed with IC that could recommend a uro that is very experienced in this field or just to chat with.
Thanks

[lalarainbow]

Hi - I am down in Annapolis Valley.. I have a friend in Truro who goes to a Uro. in Halifax. and I will email and see if I can get the name of her uro.. Hopefully she will get back to me with name.
take care

[StephN]

Thanks that may be helpful. I have gone to two uros so far and almost a year later I am still in much discomfort. I don't feel as though they truly understand what I am going thru or even what I am trying to get across to them half the time.

[lalarainbow]

yah is sure is frustrating.. sorry my friend has not got back to me.. she could be away.. We have never met and she is an on line friend..

[DebbieB]

Welcome to the new boards, I am here for support and try my best to help answer your questions !
As I am sure others will help you as well !


Hi Pam , how are you ?

Debbie :)

[lalarainbow]

Hi Debbie,
I am doing great.. been seeing a NaturalPath which has made a big difference in how I feel..
Husband has been having skin problems but he is getting better.. I am trying to get him to see my NaturalPath but he is not convinced yet..
How are you doing?

[DebbieB]

Hi Pam,

Oh , I hope that the NaturalPath goes good for you , yes I know a lot that feel the way your husband does as well.

Thanks for asking Pam , I am doing good thanks, I enjoy every day as is comes , cat scan and clinic visits every six months , hoping soon that I will be done all that stuff to.


Tender hugs, Debbie

[kobegun]

Hi
I haven't been on this forum for some time but saw your message today. I am in Halifax, NS and was diagnosed with IC in Nov 08 but as I have been having increased pain over the last few years it is believed I have pudendal neuralgia and/or possible pudendal nerve entrapment. I have pelvic floor dysfunction (hypertonic muscles, super tight) and have been working with a physical therapist and osteopath as well as a pelvic floor therapist and although they have been able to help with some areas of pain, I now have pudendal pain where even sitting is difficult. I see Dr Bailey at the QE11 as my urologist and am seeing him tomorrow morning. He does not know whether I do in fact have IC or if it is a condition resulting from the pudendal nerve issues. I did not improve with any of the IC treatments including Elmiron and bladder installations. Hope this helps.

[lalarainbow]

Hi.
How things can change in a year.. just recently finished 5 out of 6 DMSO treatments.. Last Wed. I had a Cysto/Hydro.. this is the second one I have had..this time told me I have a tiny bladder that with distension still only holds 1 cup.. I have been having lower back pain and it feels like it is pulling on bladder.. a feeling of something in vagina.. I am thinking it is PFD but my family Dr. does not suggest it ..He checked things out and did not see anything unusual... He has put me on Estrace ..
I see my Uro who did the Cysto/ hydro again in May.. He mentioned Elmiron but that makes me sick..

I am feeling better since the latest cysto/hydro but with such a small bladder I don't think I will get much release from frequency.. but I am I keep trying...

Have doubled the Sinequan which astleast helps me sleep better and also using Oxytrol patch...not sure if that is doing much or not..

Hopefully you are on the right track with the therapy..I wish I was closer to the city.. not even sure they would know how to treat PFD around here lol

[Coraline]

Hi! I am from HFX NS. I made my intro post recently here: https://www.ic-network.com/forum/showthread.php?p=594565#post594565

The doctor I am seeing has a really difficult to remember name and I saw him a year ago and have been waiting that long for a scope. ugh. I cant really say if he's effective or not because all the good things I've been able to find have been through my own research and advocating to my doctor...

[lalarainbow]

I just saw a great article on Live At Five news on IC here in NS.. Finally! - hopefully it helps with awareness.. I get tired of explaining my trips to the bathroom and no one really understands..
The young lady's name was Carolyn ---Would like to thank her for doing that..Not sure if she is on this forum..

[StephN]

I'm so glad to hear this. I live in Dartmouth and feel so alone really when it comes to IC. No one seems to truly understand unless they have it themselves and although my family and friends are understanding it is so so difficult. I hope this disease or whatever you want to call it gets some attention and maybe in turn some kind of relief for us. I doubt a cure will come but at least relief if some sort would be enough right now for me. I could feel like the "old" me and do and wear the things I want. Sorry if I sound negative but I'm going on three years now of constant pain and discomft.
Thanks for the good news though . . . .things like that give you hope.
Stephanie

[lalarainbow]

Yes -- I have only met two people who have IC face to face.. one lives in NB and the other lives down in Yarmouth...I have a very understanding Husband .. even my close friends really don't get understand..

I had a cysto hydro about a year ago and just before that did 5 out of 6 DMSO treatments..I have been doing quite well this past years.. I still have flares but not constant.. I am not so great sticking to the diet but I know certain things that I can not eat a lot of..

Hope you can find something that helps..

[summer shyan]

Just wondering if there is anyone out there from Nova Scotia?
I noticed this thread has been quiet for awhile.

Interested in talking with someone about treatment therapies, specialists etc. I am having a difficult time finding a specialist who understands how painful this disease is and is able to at least discuss pain management/medication etc.