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Magrone
10-11-2004, 04:03 AM
Hello all,
I have recently been diagnosed with IC and am so grateful to have found this website and these message boards. I have been devouring information in preparation for my next urologist appt.

My story in brief: history of endometriosis (thus almost every doc I have seen in the past three years has said that is the cause of my chronic pelvic pain), had a lap to remove cyst and endo in 2002. Was pain-free for six months and then pain returned and got progressively worse. I also developed urinary frequency and problems voiding. Had a colonoscopy for bowel problems and found a benign mass in my colon (not considered to be cause of pain). Eventually one gyno suggested I had IC. I had a cystoscopy two weeks ago when I had another lap to remove endometriosis. The result? IC. That was confirmed in my mind even more after the same old pain came back after I recovered from surgery. If the endo was gone and I still had the same pain, I knew the pain must have been IC all along.

I am relieved to have a diagnosis but still frustrated and exhausted by the two + years of pain and doctor's appts that led me here, and the work that lies ahead.

So far I am on an antihistamine (prescribed immediately after the cystoscopy) but return to my urologist next week, at which point I will discuss Elmiron and other options. I am also interested in exploring physical therapy, as I think I may have pelvic floor dysfunction. To the people who have already tried this, I would be interested to know if you have one particular point in your pelvic region that you can identify as a painful spot. I have one spot that I feel all the pain radiates from, and can touch it on the skin and it hurts like hell. feels like an injury might. Could this be a trigger point?

My cystoscopy was done in CT (Where my gyno/endo specialist is) but I live in NY so am considering going to see Dr Moldwin.

So that's me! I look forward to sharing and hearing more from people here.

thanks,
Magrone

Queensweater
10-11-2004, 04:38 AM
:welcome: Magrone! Your story sounds a lot like mine: almost every doc I have seen in the past three years has said that endo (once they finally clued in that I had endo) was the cause of my chronic pelvic pain, had a lap to remove endo in 2003. Was pain-free for eight months and then pain returned and got progressively worse to the point where I've been bed-ridden for almost two weeks now.
I am doing physio once a week right now (internal pelvic muscle stimulation), which is working to get those muscles more relaxed which in the long-term is supposed to help circulation and thus pain relief.
I am so glad I came here. This board is so much friendlier than the endo "support" group I belong to online. The day I joined here, I noticed someone from my city in my age group was a member, and we got together over the weekend. We can be a source of support for each other in person, and that is one of teh best things to happen to me in a long time! I only hope you have a good support system at home!
Good luck and hope you're having a good, pain-free day! :)

Heather

JAMIEL
10-11-2004, 05:14 AM
Welcome to the ICN!

I am sorry for your IC diagnosis but I hopefully you will start to get some relief. I am a patient of Dr Moldwins so if you have any questions please let me know. I also am seeing a PT since he has diagnosed me with PFD as well as IC. The PT is in Long Island as well, not far from Dr Moldwin's office. If you have any questions about IC, PFD or Dr M please let me know! I am not sure about the pain but it sure sounds like it could be a trigger point. I actually have a PT appt today so I will ask on your behalf and let you know.

Good luck with everything and I am glad you found the ICN. There is tons of info here and the people are so supportive!

Lots of Hugs,

Jamie

KristaM
10-11-2004, 08:38 AM
Hi there, '
First of all welcome to the boards :welcome: I'm new to this disease as well and just learning as I go along. I was also fortuante to meet a girl from this board ( Queensweater) and it really seems to help to talk about what you are going through with someone who understands. That's what we are all here for. Ask any question and someone will always be here to answer. Hope your feeling better soon
Krista
:) :)

vm
10-11-2004, 08:53 AM
:welcome: You have come to the right place! I think you'll find the information and support you get here to be healing in and of itself. :)

Magrone
10-11-2004, 09:44 AM
Thanks everyone for the replies. Heather, I agree that it is much friendlier here than on some of the endo messageboards I have seen. We really do have a similar story -- as much as I'd prefer we didn't and were both 100% healthy, it is nice to know that someone else out there understands a lot of what you're going through.
And Jamie, thanks, I might just have questions about Dr Moldwin yet! I am thinking I will go to him after I see the urologist in CT who did the cysto. But I will probably need a PT in Manhattan, because I work longish hours during the week and getting out to Long Island on a regular basis may be problematic. But I'm thinking Dr M could recommend one.
Thanks again. I feel much better already. You're right!
Hope everyone is having a good day.
M

tigger_gal
10-11-2004, 09:51 AM
Hi there :welcome: to our IC family..... you will find a wealth of info and support with in these pages.... I am sorry you have IC.....
Hugs
Brat

JAMIEL
10-11-2004, 01:15 PM
Well here is a link to a uro at Columbia (in Manhattan) who has a great rep. He was a guest speaker on the ICN. He is another IC specialist. He is also on the board of the ICA. (www.ichelp.org)

http://www.ic-network.com/guestlectures/kaufmantranscript.html

I know that peope have great things to say about him!

Also, if you are interested, there is a support group meeting at Long Island Jewish Medical Center on Sunday at 11:00. My Physical Therapist is the guest speaker so it should be interesting. I do not think that Dr Moldwin will be there but I could be wrong. Let me know if you are interested in going and I can email you the details. Good luck with everything. I asked my PT about specific spots that can cause pain and she said that can definitly be the case!

Lots of Hugs,

Jamie

AlphaDogHouse
10-11-2004, 02:34 PM
I am new here also. I have had IC for 21 years, but was only diagnosed in August. A doctor misdiagnosed me as not having it 9 years ago after hydrodistention. Since then, I've had some scarring that has reduced the size of my bladder.

I am getting the bladder installations, but I have to admit, they don't seem to be working. I feel like I'm getting worse.

Stella1609
10-11-2004, 02:36 PM
Welcome to the ICN! Alpha, have you read over the ICN Patient Handbook? There may be another treatment that will work better for you!

Laura

AlphaDogHouse
10-11-2004, 02:52 PM
I will have to check it out. Thanks.

Magrone
10-12-2004, 11:40 AM
Jamie, thank you so much for asking your PT about the sore spots/trigger points! I appreciate it. I probably won't be able to get out to LI on Sunday for the support group but thanks again for the info. And for the link to Dr David Kaufman. It helps having someone in Manhattan, due to my not-so-understanding boss. I've had so much time out of the office traveling to doctors this year that I'm trying to minimize stress, but at the same time want to see the best doctors I can. Dr Kaufman sounds like a good option with that in mind.
Hope you're having a pain-free day :)
M