Ic or not ic that is the question.

[Nina 23]

Hey everyone I am so happy to that this board exists :) :)
I was diagnosed last year with Ic-The doc used a potassium test that was 50/50, but the symptoms all reflected ic. I have used elmiron for a year and a half and it has decreased the inflammation. I have also been using atarax.
I thought it was an auto immune response and have been taking allergy shots. MY last urogynecologist recommended a interstim without a cysto. He said to me its just another procedure.I actually did try the temporary interstim and it was excrutiating. My family told me to go to other uro's before I implanted something in my body. I did go to two urologists and the last one did a cysto and said my bladder looked fine inside but it could not hold more than 350 cc's . :yikes: Help what is that. He said their must be some nerve damage from my pregnancies that is causing the bladder to not be able to stretch. Now I am so confused more than ever. I have been through so much urinary pain this year. I can not ever drink soda without pain and now this may not be ic. I have all the symptoms. Does anyone know any good ic specialists in queens, nyc or LI that take GHI. Do I need a urogyno again or is a urologist just as good. I did write my story on another thread. I just used the board for the first time and didn't know how to begin a new thread. So if you are reading this twice sorry, must be the ultracet. AH I was probably to shy too. Although Ive found the board several months ago. I just sunk in such a depression. I am in constant pain and a year and half later the doctors still don't know what I have. I think this best specifies how I am feeling right now. :toilet: and :yikes:
Does anyone have any advice on nerve blocks ?
I am starting on instillations next week . Is this chronic pelvic pain if not ic?
Thank god for this board. Reading everyone's story really keeps me going.
:bow: Thanks for reading and sorry for the wordiness.
Thanks again Nina 23

[~*~Christine~*~]

Hi :hi:
I find it quite strang that you have these symptoms yet your cysto indicated that you don't have IC. Maybe you should get a second opinion because you might have it or maybe a different cystitis.

[Sarojini]

Hi Nina,

First, :welcome: to the boards. :) I'm very glad you found us!!

Please be aware that there is a subset of patients out there who do not have the classic signs of IC upon hydrodistention of the bladder (pinpoint bleeding, ulcers, etc)... yet, these patients exhibit all of the symptoms and misery of IC and benefit from all of the same treatments. For all intents and purposes, these people have IC. You may be one of these "atypical" patients. I think that if the treatments help, then you should by all means continue them!!

Definitely try the instillations, and there are other oral meds out there (for example, have you tried a low-dose tricyclic antidepressant for your pain yet? These change the way your nerves transmit pain messages and have been a Godsend to many IC patients). You can read more about these and other treatments in our Patient Handbook (http://www.ic-network.com/handbook).

I would exhaust all of these medical options before you do something as drastic as the Interstim, which, by the way, is for urinary frequency and urgency and will not help much with pain -- so, if pain is your main complaint, you might be disappointed with the Interstim.

Again, I'm glad you found us :) You will find a lot of support and info here :)

[JAMIEL]

Sorry that you have to go through this...I am going through a similar situation..IC or not IC...but my doctor is one of the best and he is in Long Island in New Hyde Park...Dr Robert Moldwin...I am not sure if he takes your insurance but it is worth a phone call to find out. If you are not familiar with him he is the author of "The Insterstital Cystitis Survival Guide" and a wonderful uroligist. There is another doctor that is in NYC (Kaufman) I think? who is supposed to be great as well. IF you have any questions or need more info on how to reach Dr M email me at BJSAMIJOSH@AOL.COM.

Jamie

[vm]

I'll second the Dr. Moldwin recommendation. He is very knowledgeable and personable.

[ICNDonna]

When you had your cysto, was it with anesthesia in a hospital? An office cysto will not diagnose IC. The bladder needs to be distended (stretched) before the IC is visible.

My IC is treated by a urologist (the same one who diagnosed me in 1975).

Also, I agree that interstim should be a last resort --- meaning that other treatments have failed. Interstim is not for pain.

Warm hugs,
Donna

[Dixiefireball]

:hi:and :welcome: to the icn

[Nina 23]

Hey everyone thanks so much for responding. I'm definitely going to go for another opinion. I'm just so tired of doctors. I just came from an allergy shot. Where I
have to wait for a while until my arm gets red. (I thought it was an autoimmune response for the past year). Where can I get info on atypical patients of ic. I'm definitely going to look up Dr Moldwin. I hope he takes my insurance. The cysto was
done in his office but with anesthesia. He said he tried to stretch the bladder but it would not stretch. The temporary interstim hurt but it helped with frequency and with
the pain. Any info on Moldwin and Kaufman I'd appreciate. Thanks so much guys. You guys actually made me smile today. It has been a long time since I did that .Thanks so much again and God Bless Ya!

[SharonA]

:hi: :welcome: I am glad you found us and decided to post.

The interstim is not to be taken lightly. It is not a treatment for pain. It is put inside your body during major surgery. You would be wise to search out other things before you have this done. Have you checked out the IC Diet available here on ICN? There are those here who have reported that it helped them a great deal. There are many treatments that can help reduce or eliminate IC symptoms. :)

[JAMIEL]

Here is Dr Moldwin's office #718-470-7223 and he is at Long Island Jewish Medical Center in New Hyde Park (LI)...I have been going to him since my first uro diagnosed me with IC in January. Dr Moldwin also diagnosed me with PFD so he is treating me for that as well. Please feel free to email me whenever if you have any questions. Here is a link to LIJMC - http://www.lij.edu/lij_homepage_ns.html

I do not have any info on Dr Kaufman but I hear he is an excellent doctor as well!

Jamie

[Nina 23]

Thank you Jamie for the info. Im definitely going to go see Dr Moldwin. How many times can I have a cysto, health wise (with anesthesia) and insurance wise.I have tried the diet. I do use prelief thanks to the board. HAs anyone ever heard of presacral neurectomy where they cut the nerves around the bladder. Since my ic might be actual nerve damage. The last uro I went to said bladder augmentation is an option for people who can only hold 100cc's. Help what's 350cc's. Is that 8oz. Is it
as big as surgery as the uro said. On a happy note. (Thanks to you guys). How do you get access to the smiley faces without posting a new thread. Thanks again for replying. This board is definitely a blessing.

[ICNDonna]

I just had my 37th hydrodistention on July 28th. My first one was done in 1975 and diagnosed my IC --- it also helped with symptoms for months.

Normal bladder capacity when awake is approximately 500 cc's, which is about a pint. Under anesthesia, a healthy bladder will hold up to 1000 cc's or more. Mine holds about 300 cc's most of the time.

And --- to use the smilies in a response, you need to first click on the link to post a reply; the smilies are to the right of the box.

:dogrun:

Hugs,
Donna

[Nina 23]

Thanks ICN Donna for the replies. Found the smileys :) .:hi:
Sorry I am groggy from the ultracet. Do you know where I can find info on
atypical patients of ic-with a bladder that looks fine on the inside but can't stretch more than 350cc's. If I try to drink more than a cup of water I hurt really bad :yikes: . Can a laparoscopy find the nerves that are causing this bladder from stretching. How big of an operation is a bladder augmentation.
What about a presacral neurectomy and nerve blocks any info on these. I am getting so dizzy from just not knowing where this awful debilating pain is from. :dizzy: . Thanks again. This board is helping so much :angel: :pray:

[CharAnn74]

Nina,
My best friend has had IC for 7 yrs and did an interstim as a last resort.She now regrets it.But, does not want to have it removed do to the downtime of the surgery.Why are they talking all this serious stuff if they do not think you even have IC? You stated in another post that you were having a distention, this should tell them more that the cysto I would think....

[mayray518]

I suffered with IC pain for 6 years and always had normal capacity (800 ccs) but had petechial hemorrhages and inflammation so my bladder couldnt hold anything due to the inflammation. Now that I have gotten my IC under control with elavil my capacity is still large and the inflammation has subsided. There are so many different guidelines that they use to diagnose IC. But you should definitely have a hydro and distention.

[stacyann_1]

If you're unsure at all I'd suggest another opinion. I've been going to Dr. Kaufman, but haven't seen him long enough to recommend him. Many people say they hear he's a good doc, but I've heard of maybe only one person that goes to him, and she didn't post a lot of details. Dr. Moldwin sounds great though. Good Luck!

:) Stacy

[crystilclear]

I'm always sad to see so many new posts of people with IC. Hopefully you can find soimething that will help before you do something more serious. You should try some of the things that do not have a surgical procedures involved especially when you have been newly diagnosed. I hope that there may be a medication that can help you with the pain. Take care and ask lots of questions with your doctor. Do not just take his word for it get another opinion if need be and research other treatments. It is your body and you ultimately decide what to do and what treatments to try and not to try. It would be aweful if you rushed into the interstism and it didn't help. Sometimes it takes a little while to find the right treatments but they are out there. Take care - Chris

[Nina 23]

Thank you all so much for your posts.:bow:
Now for the first time I actually do not feel so alone. :woohoo: :) :) I just quit my job and was told I had ten parents make a request for me. I used to teach first grade. Unfortunately I can not work with so much pain :rolleyes: -That's why I tried the temp interstim. Does the elavil have any side effects? Thanks guys again.
Hugs :angel: :pray: :grouphug:

[JAMIEL]

Nina,

I was just wondering what you decided about seeing another uro? I spoke to Dr Moldwin today so it made me think of you!

Lots of gentle hugs!

Jamie

[Nina 23]

Jamie I did make an appoinment with Dr Moldwin for Oct 25. :bow: Thank you so much. I also asked my present doctor about atypical patients of ic. Jamie why didn't he tell me about this last week. Thank god you told me about atypical patients. I also asked him about PFD, and he said oh yes again. OK I thought time for a urogyno. I am also trying to find Dr Moldwin's book at barnes n noble. Thank you Jamie for your posts- you saved my sanity. I also asked my uro about the e-stim and he said just use K Y Jelly only on the tip not on the silver. If you put any on the silver use very little. K Y is just as good. Did he say anything about atypical patients-just curious.
Nina-Thanks again. :)
:bow:

[JAMIEL]

Well I am glad that you have an appointment...Although he is a Uro he is the one that diagnosed me with PFD (he did the whole nine yards..pelvic exam etc) so I don't think you need a urogyno...He is treating me for the PFD as well. You can get his book online at Amazon or Barnes & Noble...Orders $25.00 or more and they don't charge shipping. There are a few other good books on IC so you might find another book to get at the same time. The book is also available on this site as well. I did try some jelly on the e-stim yesterday and seems to have helped. I just found out that my insurance will not pay for me to have one at home so I am deciding if I want to pay the $150 a month to rent one. I guess it all depends if it is helping or not which I am not sure of yet!!!! What a mess! LOL I see Dr M next wednesday so I will let you know how it goes.

Jamie

[Nina 23]

Jamie :hi:glad the K Y worked. I was reading about Dr Moldwin work on the ICN. He is a uro who seems to know what he is talking about. I can't wait to see him in person. The only thing is I am getting so tired of this disease :rolleyes: . I can not wait to ask Dr Moldwin about my installs being non DMSO cocktails. I got very bad cramps from them. :bonk: . My uro said he's giving me this because of my allergies being so bad, but Jamie if you can ask him about non DMSO cocktails for atypical patients I'd appreciate it.
My uro said to use the E-Stim twice a day for 15 minutes at a time.
Hugs, NIna :dogrun:

[JAMIEL]

Hi Nina...

I saw Dr Moldwin but did not get to ask him too many questions...He seemed like he was having one of those days and we spent so much time talking about my physical therapy. I can see why it is taking you so long to get an appointment with him. I think he must only have certain times alloted for "new patients" since he spends so much time with them! He is having me see a PT near his office who is supposed to be "the best"...Of course she does not take insurance. He does not like what my current PT has been doing (or not doing with me). I feel like I have wasted my time with her!!! I can't get an appointment with the new PT until Oct 4th so that bums me out....Everything takes sssssssssssoooooooooooo long!!! Make sure you have all of your records with you when you go to see him. It is important for him to have copies of everything! Let me know how things are going!

Jamie

[Nina 23]

Hey Jamie-Its Nina- I am sorry your having a hard time with the pt. Guess what I finally saw Dr Moldwin. :woohoo: Yes I got to see him a month sooner because they had a cancellation. Anyway he said I had pfd for sure. My muscles are spasming so much they are effecting my bladder :yikes: Thank you Jamie for recommending me this doctor :bow: .He was fabuloso. He said I was taking so many needless med's. As far as the ic he wasn't sure I had it but the pfd had to kept under control otherwise I am gonna find myself in trouble. Jamie it took three hours to see him but it was worth it. I am going for physical therapy too. I hope they find a cure for this pfd soon cause between the installs and the meds I am exhausted.
Good luck with the pt,Nina