newly diagnosed and feeling confused

[gillybean]

Hello-I have been recently diagnosed with IC and am feeling a little overwhelmed with it all. I have been viewing the ICN for sometime now and the information available is wonderful, and reading others stories of encouragement etc. is fantastic and good for the soul so to speak! I had no idea that so many people suffered from the illness as it is not something that one talks about at the water cooler at the office!
I developed the symptoms about three years ago after I decided the leave my marriage and I am certain that the stress related to this decision caused my IC. A good reminder the damage that stress can play on one's health! After doing some research on the Web I pretty much diagnosed myself and this has been confirmed by my Uro. I consider myself lucky as many people from what I have read go for years before getting a proper diagnoses.
On my last visit to my Uro I discussed various meds and treatments plans that I was aware of and was told that in his opinion none of them work. I am scheduled for a hydro and was told that I could repeat the procedure as need (ie semi annually).
Also, any suggestions for the best pain medication? When the flares are bad
I take Advil, do castor oil packs and of course don't go far without my hot water bottle!
My most recent flare was the worse(three weeks) and now I have the constant sensation that something is falling out so to speak, and I often squat down to temporarily relieve this feeling. Also, walking etc...increases this feeling..... and is just plain painful.....is: this just another IC related symptom?
Thank you for reading and I look forward to your responses.
:confused:

[SandyRN]

:welcome: to the board. It really is wonderful here and there's SO much information! I'm glad you found us. One thing I noticed in your post was that you take Advil when you have a flare. Most IC'ers have problems with Advil and other anti inflammatories. They can make bladder pain worse, so that's something you might want to consider. Have you tried pyridium for your flares? It's sold over the counter as AZO standard, but Eckerds, Walgreens, Walmart, etc have their own generic brands, that are MUCH cheaper and you get more doses in a box. I really couldnt live without it.

I dont know if your uro has talked to you about pain medicines, or about home instills. If not there are endless combinations out there of meds that will ease the pain. I do home instills with heparin, sodium bicarb, and lidocaine. They really are lifesavers, and the heparin is supposed to mimic the effects of Elmiron. I can't take the Elmiron because it caused too many stomach problems and other side effects, but that may be an option for you.

Check out the patient handbook, the link is at the top of the page, and there are diet tips all over the board, and in the handbook that can help you figure out what your trigger foods are. All of this combined should get you started on your own regimine and hopefully you'll get some control over your IC.

It's nice to meet you!

Sandy

[Ginny]

One thing in your post bothered me. Your doctor said nothing works for IC. I think you might want to find another Urologist. There are some people that are not helped but there are others that ARE helped. There are many medications to try (Elavil, Elmiron, etc). Please read as much as you can so you and your doctor can decide what is best to start with.

Ginny

[gillybean]

Thank you for your warm welcome and for all the information-I will give the pyridium a try asap! I have done loads of research on IC and attended my recent Uro appointment with names of meds and other options (installations) which I had researched. Naturally I felt discouraged when I was told that the likelyhood of these meds and treatments working was slim if any.....thus the upcoming hydro which should provide 5-6 months relieve?

[Berkshire Road]

:welcome:

I'm chiming in with Ginny here -- get a new doctor. There are a lot of treatments that work for a lot of people with IC. You may have to try several things, toy with dosages and combinations for a while, but you WILL be able to get at least some relief.

Fire this guy!

[vm]

:welcome: So glad you found us. :)

That really, really bugs me that your doctor told you no treatments work for IC. Which had you mentioned? It bugs me first b/c that's really crappy to give the patient that impression and not give them hope. Secondly, it's simply NOT true!

Is he willing to "humor" you and prescribe some of these meds he feels don't work? If not, I'd move on. I mean, think of him as a blessing for diagnosing you and then believe someone else is out there to help you find the treatments that will get you on the road to feeling better! :)

[gillybean]

I am so glad that I found you all also...you all are truly remarkable, strong, compassionate individuals who have so much to offer others in this unique journey
...

I felt that I was well prepared for my Uro appointment and discussed Elavil, Elmiron and the benefits of installations. He said that the reason that there are so any treatment options is that none of them really work, thus the best course of action is the hydro to offer much needed relief for a few months. And yes, he will give me the Elmiron if I want, but again is doubtful about the positive results. In his opinion, the best medicine is sharing with another IC patient(s)......so here I am!!!!

Also, is it normal to have the sensation that something is on the verge of falling out of my vagina? Is my poor little bladder responsible for this feeling? This feeling intensifies when I walk and stand...please let me know if any one else experiences this.:bonk:

[L. Thomas]

Well I must be the walking miricle....My IC treatment has been 100% effective from the beginning.

I think I would get a second opinion. I'm not sure how I would start, maybe check and see if the MD, GYN, URO,or UROGYN has treated IC paitents successfully. Perhaps the hospital has a referral list.

[VickiB]

Welcome to the board!

I'm another of those people who were lucky enough to find relief from IC symptoms. Not totally, I still have the occasional flare, but it's way, way better than it used to be! I don't know if you've looked into the IC diet yet? (It can be found in the handbook link at the top of the site) I noticed a dramatic decrease in my symptoms when I began to watch what I ate & drank. Though I do believe the meds helped too.

I know it's not always an easy option to change doctors in Canada. The hydro may be the perfect treatment for you. I've read a number of people say it brings them relief, and hopefully you'll be one of them. If not, it does sound like your Uro is open to trying meds, despite his lack of belief in finding success with them. Perhaps you'll then be the one to change his thinking along those lines!

No, I've never felt the sensation you describe, but I believe I've read of others describing that same feeling.

Welcome!
Vicki

[miz_sunshine87]

Hi Gilly,

I have the vaginal pressure too. It's not something people talk about very much, but it seems to affect quite a few of us. For me it feels like I've literally got a large object stuck up in there, and I feel the urge to pull it out. I've also got a general pulsing/throbbing feeling in and around the whole vaginal area. There have been a few times in the last month that both the bladder and vag have been feeling 90%+, but overall I'm feeling one or the other, or both. This has been posted about previosuly in the "sex and relationships" board, as well as the vulvodynia board (but I don't think it really is vulvodynia). You can check back in the comments I have written to find these posts, because I've commented on pretty much all of them.

Seems like your uro and my old uro had similar views. She also thought that repeated hydrodistentions were my best hope, but she also put me on amytriptyline and hydroxizine. She didn't want to use elmiron because I was underage at the time, and did not even mention instillations (probably as to not scare me). I went into remission within a few months of the hydro, but the doctor thought it would come back and I would need more hydrodistentions. It seems as though it was really the pills that made me better, as I enjoyed a full remssion for over 3 yrs, only feeling slight pressure at certain times of the month.

I came out of remission on November, and I strongly believe that it never even would have happened if I hadn't been under so much stress. I've recently increased my doseages of meds, and I'm trying some natural supplements too. I'm trying to reduce stress and avoid bad foods too. Slowly I think I am getting better. I might add elmiron in too, but I am going to see if I can get better without it.

As already mentioned, there are some unlucky people who don't find treatments that work, but the majority do.
Good luck :D

[colinmac]

Hello-I have been recently diagnosed with IC and am feeling a little overwhelmed with it all. I have been viewing the ICN for sometime now and the information available is wonderful, and reading others stories of encouragement etc. is fantastic and good for the soul so to speak! I had no idea that so many people suffered from the illness as it is not something that one talks about at the water cooler at the office!
I developed the symptoms about three years ago after I decided the leave my marriage and I am certain that the stress related to this decision caused my IC. A good reminder the damage that stress can play on one's health! After doing some research on the Web I pretty much diagnosed myself and this has been confirmed by my Uro. I consider myself lucky as many people from what I have read go for years before getting a proper diagnoses.
On my last visit to my Uro I discussed various meds and treatments plans that I was aware of and was told that in his opinion none of them work. I am scheduled for a hydro and was told that I could repeat the procedure as need (ie semi annually).
Also, any suggestions for the best pain medication? When the flares are bad
I take Advil, do castor oil packs and of course don't go far without my hot water bottle!
My most recent flare was the worse(three weeks) and now I have the constant sensation that something is falling out so to speak, and I often squat down to temporarily relieve this feeling. Also, walking etc...increases this feeling..... and is just plain painful.....is: this just another IC related symptom?
Thank you for reading and I look forward to your responses.
:confused:

I can sympathise with you about the response you got from your urologist( I think I got his twin!!)....Mines told me there's no cure..check the internet... I suppose I can look on that as good advice because the internet has been my only source of information and help... Since being diagnosed at the end of 2006 I went on Elmiron (which I saw on the internet and got my doctor to prescribe it for me). I also followed the recommended diet form the internet and I reduced my salt intake drastically to 900mg daily.(this includes added salts in all my foods)I would say that today I feel about 50% better. I am only 2 months on diet and medication. It is not to say that my IC was mild because I had to go to A & E on a few occasions to get morphine for pain. I found that no other pain relief had any effect on me. I hope that I will continue to get better as the diet is tough enough to follow. I hope that you feel better soon. Colin