Newly Diagnosed!

[Renate]

Hello Everyone,

Wanted to introduce myself to all of you wonderful people! My name Is Susanne! Suspected IC saw 4 Uro, 2 Ob/gyn and was officially Diagnosed on April 28th After flying out from CO to CA to see Dr lowell Parsons! I am so grateful to this site even though I wish not a person in the world had to suffer this awful illness! God Bless you all!

[greeneyes]

Welcome, we all feel the same way. I too and pretty new to the diagnosis and every day is a learning curve for me.

[Becky Jane]

Hi Sue, I am sad that you have to be here but Ive found this to be a very comforting place with many good, kind, warm and very brave people who all understand what each other is going through. Has the uro started you on meds or other treatments yet? How are you feeling now?

[Renate]

Currently only taking Elmiron 2 in the morning and 2 in the evening! Supposed to go back for follow up in 4 months! Following the IC diet also! Pain and urgency drives me crazy and I cry all day and am depressed this all can be so overwelming and confusing to figure out!

[Becky Jane]

Currently only taking Elmiron 2 in the morning and 2 in the evening! Supposed to go back for follow up in 4 months! Following the IC diet also! Pain and urgency drives me crazy and I cry all day and am depressed this all can be so overwelming and confusing to figure out!

Oh yes it can be Call the uro and tell them that you are still very uncomfortable. It can take the Elmiron several months to start working in some people. They can prescribe Elavil in the mean time, that may help with the urgency and pain. I also take Motrin or Aleve for inflammation. There are many other supplements that can help with IC including Glucosamine, chondroiten, MSM, quercetin. Make sure youre drinking enough water each day too, if your urine becomes to concentrated that can cause more pain and urgency. I hope the Elmiron begins working for you soon. Let us know how your doing

[flowerangela]

i know this is off topic but becky i really do love the quote in your signature. welcome to the forum,susanne. in the beginning,IC is very depressing and overwhelming to deal with. however,it does get better with time when you figure out what treatment plan works best for YOU.we are all so different.we are here for you. i was in your position 4 months ago (newly diagnosed) and never thought i'd start to feel better. time heals all. never ever give up on finding effective doctors/treatment.

[Renate]

Thank you all for all your wonderful encouragement. I dearly appreciate and value all your knowledge and insight and look forward every night before I go to bed to wake up and sign on here! I am sure you all can relate on the effects this has on us personally but not just us our significant others too! I worry tremendously he will get so frustrated with me and can't take my emotional roller coaster ride and sure he gets tired of my non stop talking of IC. all just for being here! Thanks again!

[Melissa66]

Hi Susanne! Welcome to the group and know that you have a safe haven of support here.

I was diagnosed in 1998 and thought my life was over because my IC pain and frequency were so awful. But I found a urologist who is very knowledgeable about IC and despises the disease. First I was on Elmiron which worked beautifully for a time then it suddenly stopped working. My Dr. then put me on Enablex 7.5mg about 4 years ago and it's a very effective drug with no side effects. I feel blessed that without much difficulty I found a Dr. and treatments that give me back a normal life.

There are so many IC sufferers out there who have tried every treatment imaginable with no relief. I hope that you find a Dr who wants passionately to find a treatment that relieves your symptoms and prescribes meds that ease or eliminate your pain. Please don't give up until you have found your answer.

[Mothergoose]

Renate

Becky Jane said she takes Motrin or Aleve for inflammation, just so you know a lot of ICer's can't take NSAIDS, so can we are all different.

Also a lot of people have good sucess taking hydroxizne or aterax, it is an antihistamine, it is thought that some of IC is too much histamine in your bladder, so this med reduces the amount of histamines, as Becky Jane said there are a lot more things you can try and I would not wait 4 mons to call back to the Dr. as some of things you only need to take till the Elmiron kicks in which can be months.

Good luck MG

[Becky Jane]

Renate

Becky Jane said she takes Motrin or Aleve for inflammation, just so you know a lot of ICer's can't take NSAIDS, so can we are all different.
Also a lot of people have good sucess taking hydroxizne or aterax, it is an antihistamine, it is thought that some of IC is too much histamine in your bladder, so this med reduces the amount of histamines, as Becky Jane said there are a lot more things you can try and I would not wait 4 mons to call back to the Dr. as some of things you only need to take till the Elmiron kicks in which can be months.

Good luck MG

Mothergoose, Im wondering why that is? My uro suggested Aleve or Motrin years ago when I had a flare. What symptoms does it cause with you? I find that it sometimes makes the urgency worse for me after I take Motrin

[BKPoague]

I'm fairly new too and it's very overwhelming. I wish you luck and I'm really glad you've found such a great doctor.

[Mothergoose]

Taking most NSAIDS cause me to flare, it has been a long time since I have tried them.

I have read over and over again about people having problems with them , and flaring with them.

You could search it for old posts about it, I am sure you will find quite a bit about it.

I assume and I only assume it hits your bladder acidy, I do know that it can be hard on your stomach I assume because it is acidy. Please note I said assume I don't know this for fact.

MG