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 37 year old female diagnosed with IC 3 years ago

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lak78



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Join date : 2016-01-05
Location : Brisbane, Australia

PostSubject: 37 year old female diagnosed with IC 3 years ago   Tue Feb 16, 2016 7:24 am

I was diagnosed with IC 3 years ago however I had symptoms for a year before my diagnosis. I have a history of UTI's, my first was in 2001 when I was 22. From then until around 2006/2007, I would get them occasionally, as a lot of women do, and then suddenly they became very frequent. Sometimes I would present with an infection and sometimes I wouldn't. The year before my diagnosis, on a monthly basis, I would feel like I was getting a UTI however it would never develop into a full blown UTI but the Doctor kept prescribing me antibiotics which were mostly ineffective. I was finally fed up and told the Dr something more had to be done, that's when she referred me to a urologist and my diagnosis was made after a cystoscopy and hydrodistention. My IC symptoms at that time consisted of mild frequency and hardly impacted my life. I became pregnant a few months later and went into remission in my 2nd & 3rd trimester. 7 weeks after giving birth, my symptoms came back but they came back very different to what they were before. This time I had frequency and an all consuming pain that spread down my legs, into my back and up to my stomach. It has been one of the most trying and difficult times in my life. I was so upset that I was robbed of being able to enjoy my baby and I still struggle with the fact that I am a distant mother to her as my mind is so often occupied with my bladder and the pain it causes. My marriage is also suffering and as much as I would love a sibling for my daughter, I just don't think I could cope. IC has impacted so many aspects of my life. I have tried endep, which was slightly effective, pelvic floor therapy, which made no difference, and I am currently on Elmiron, which has been my saviour. I am by no means pain free but my pain has been halved. I suffer from urethral and localised bladder pain which differs on an hourly basis - it ranges from stinging, burning, a deep, sharp pain or a very distracting, uncomfortable tickle . I don't have any of the other conditions often associated with IC like fybromyalgia or IBS. One thing I have learned since having this condition is that GP's don't have a clue about it and urologists just don't care about it. They have left me feeling severely let down and disappointed, if only they could walk a mile in an IC sufferers shoes........... Hearing about your research has filled me with so much hope, I truly hope you find the cause of this horrendous condition
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Aaarrrggghhh



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Join date : 2016-02-22
Location : Adelaide

PostSubject: Re: 37 year old female diagnosed with IC 3 years ago   Wed Feb 24, 2016 2:24 pm

How can we get Elmiron in Australia??? I thought we didn't have it? :-) Yes please.
By the way I totally get your misery and lack of understanding from doctors. My first GP was horrendously vacant about it and the first Uro was telling me it was all in my head.
Absolute devastation is what I felt for months. The depression and grief over wanting your old life back is always on your mind. The pain psychologist told me to think of this as your new normal!!!!! And to stop being in denial that this is a chronic pain condition that will be with you for life. NOT IF I HAVE ANYTHING TO DO WITH IT IT WON'T!!!!!!!
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lak78



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PostSubject: Re: 37 year old female diagnosed with IC 3 years ago   Wed Feb 24, 2016 2:32 pm

God, that's a depressing thought from your psychologist, that doesn't make anyone feel better! At least we have hope now that Professor Marshall and Dr Volikova have taken this on.

My urologist prescribed the Elmiron for me and when I took it to the chemist they had to order it in. It was here in a couple of days so it's no problem to get. It's also a lot cheaper here than in the states, it's about $120.00 a month. Unfortunately for me, I've just had to stop taking it because it's giving me stomach problems. I stopped only a couple of days ago so I'm bracing myself for the onset of my old pain Sad
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Tina2



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PostSubject: Re: 37 year old female diagnosed with IC 3 years ago   Fri Feb 26, 2016 2:49 pm

Try Marshmellow Root, far less expencive and over time does the same as Elmiron with no side effects. Start with a low does as it can increase frequency for some until your system gets use to it. I find I can only take 1 per day and dont take it with other medication wait an hour I take mine mid day
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lak78



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PostSubject: Re: 37 year old female diagnosed with IC 3 years ago   Fri Feb 26, 2016 2:52 pm

Thanks for the tip. What brand do you use?
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Tina2



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PostSubject: Re: 37 year old female diagnosed with IC 3 years ago   Fri Feb 26, 2016 2:56 pm

Nature's Way
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lak78



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PostSubject: Re: 37 year old female diagnosed with IC 3 years ago   Fri Feb 26, 2016 2:57 pm

Great, I'll give that a go. Thanks!
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Tina2



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PostSubject: Re: 37 year old female diagnosed with IC 3 years ago   Fri Feb 26, 2016 4:34 pm

You will find it far cheaper on line this is the company I use they are in the US but a great company with quite quick delivery. http://au.iherb.com/search?sug=marshmallow%20root&kw=marshmello&rank=2#p=1
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IC Queen



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Join date : 2016-04-13

PostSubject: Re: 37 year old female diagnosed with IC 3 years ago   Sun Apr 17, 2016 12:59 am

I spoke to Dr. Parsons (in person, at a research mtg.) many years ago when I was getting good response from home heparin instillations and he said I could probably switch over to Elmiron and do well. This made me think they worked in the same way. But I had tried Elmiron when it was SP 54 from Germany and literally had to sit up in bed to breathe, so no way would I switch over. All my good wishes that good treatments at least and a cure at best come sooner rather than later. I lost too many friends to suicide in the distant past. At least now we can get pain meds in the meantime.
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Tina2



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PostSubject: Re: 37 year old female diagnosed with IC 3 years ago   Sun Apr 17, 2016 6:24 am

wlecome IC Queen, we are all very excited by what Prof Marshall and his team are doing, at long last we have some one to help us
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dantheman



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Join date : 2016-04-04
Location : Adelaide

PostSubject: Re: 37 year old female diagnosed with IC 3 years ago   Sun Apr 17, 2016 6:41 am

Let's hope he doesn't give up on us and hope fully other professors will join in to help fill in the gaps. Finding the cause is only 1 part of the equation. Working out how to reverse the damage and stop the damage will take a new approach to drug therapy. I hope other faculties will be able to provide knowledge about how pain works, why it does what it does, then how to reverse it on one specific part of the body without affecting all the other parts of the body that need to feel pain. Or maybe it's simpler than that and that's why no one has found a cure. Perhaps researchers have been looking to deep.
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IC Queen



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PostSubject: Re: 37 year old female diagnosed with IC 3 years ago   Sun Apr 17, 2016 8:19 am

Check out the research at Columbia University on the bladder lining. Just search interstitial cystitis.
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Tina2



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PostSubject: Re: 37 year old female diagnosed with IC 3 years ago   Sun Apr 17, 2016 8:38 am

IC Queen for those who's IT skills are lacking (me) can you give us a link please
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Tina2



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PostSubject: Re: 37 year old female diagnosed with IC 3 years ago   Sun Apr 17, 2016 8:42 am

Well this morning the burning has settled, yes this is a good thing, but it is also a bad thing because it shows just how unpredictable IC is. You cant (like normal people ) say - oh yes would live to come to your event, you have to say "I will try and see how I feel" because you never know when this thing will flare or for how long. You very quickly loose friends and in my case (family) and become isolated and that in its self makes life very difficult.
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IC Queen



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PostSubject: Re: 37 year old female diagnosed with IC 3 years ago   Sun Apr 17, 2016 11:45 am

Tina2, tried to send the link, but got a message that newcomers could not post an external link until 7 days pass. Sorry. Will try again later, but I am betting you could find it. Just go to Columbia University Medical Center and type in interstitial cystitis in the search block in the upper right hand corner. If I can do it, chimps probably are experts. It does mention about halfway down in the article that it could help people with IC. Perhaps someone else could provide the link. Dan you just might be the man. I like the description it gives of the bladder lining.

Also, Tina 2 thanks for welcoming me. It really means a lot for a long time isolated person as you so accurately describe. All the best to you.
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Tina2



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PostSubject: Re: 37 year old female diagnosed with IC 3 years ago   Sun Apr 17, 2016 12:32 pm

Thanks IC Queen remember - together we stand tall divided we fall.
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Tina2



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PostSubject: Re: 37 year old female diagnosed with IC 3 years ago   Sun Apr 17, 2016 12:37 pm

Found this link http://www.columbiaobgyn.org/condition_treatments/interstitial-cystitis-aka-bladder-inflammation#.VxMSIPl96M8
May help those new to IC to understand what is happening to them
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dantheman



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PostSubject: Re: 37 year old female diagnosed with IC 3 years ago   Sun Apr 17, 2016 12:43 pm

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IC Queen



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PostSubject: Re: 37 year old female diagnosed with IC 3 years ago   Sun Apr 17, 2016 12:56 pm

Well actually that wasn't it, it was just your basic overview. I think, I barely glanced at it. So I tried to do it myself and you have to type in Columbia University Medical Center Newsroom and then put interstitial cystitis in the block that says, "search the newsroom." I had left out Newsroom above. I think it is worth checking out. Sorry for misleading you.

The title of the research article is, "Researchers Discover Cells that Restore the Bladder's Unique Lining." And there is a bright picture of the bladder lining.
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dantheman



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PostSubject: Re: 37 year old female diagnosed with IC 3 years ago   Sun Apr 17, 2016 1:06 pm

I hope the moderator removes my link above about dairy farmers it should have been this one http://newsroom.cumc.columbia.edu/blog/2013/09/19/bladder-progenitors-discovered/

I wonder how this research is going? Is it still ongoing? Have they made any further progress. Los of discoveries are great but they needed to convert them into treatments
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IC Queen



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PostSubject: Re: 37 year old female diagnosed with IC 3 years ago   Sun Apr 17, 2016 1:21 pm

Very true, but I am still wondering about those dairy farmers as I was just having my treat, ice cream, which I actually find to be bladder soothing or maybe I just want it to be!

Tina2... I was thinking about the "very distracting uncomfortable tickle" you mentioned in your initial story. In the support groups we called that "crazy pain," not as bad as the bad pain, but in many ways much worse. You understand? We called it that because it basically made us crazy. At least that went away for me.
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dantheman



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PostSubject: Re: 37 year old female diagnosed with IC 3 years ago   Mon Apr 18, 2016 6:16 am

I guess this report emphasis what i was saying about this disease in My earlier posts. That it will ultimately involve and does involve a multi disciplinary approach. I think the report above discusses http://newsroom.cumc.columbia.edu/blog/2013/09/19/bladder-progenitors-discovered/v the role of stem cells and more to the point progenitor cells which are not working in people with IC or People who have damaged bladders. This is an area of stem cell research which is still years into the future and its application to IC could be years away.
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