Baltimore area

[Kirstiexanne]

I was wondering if there were any good support groups or just get togethers in the baltimore area for IC patients. I would just like to become friends with someone in my area that can relate to. If anyone has any information please let me know. Thanks.

[SharonA]

I do not know if this group is still active. You will have to check on that. This was found here: http://www.ic-network.com/forum/showthread.php?t=30094


Maryland/DC

The Baltimore/Washington DC IC Support Group
P.O. Box 285
Bel Air, MD 21014
Group Leader: Tina Nachodsky
E-mail: Tina@BaltoDCicSupport.com
Meetings are held in Laurel, Maryland.
Website: http://www.baltodcicsupport.com
Please visit their website for meeting dates & locations. This is an independently organized local group. No dues or fees are required to join.

[Pucca]

Hi Kristiexanne! I'm glad you posted this; I'm in Baltimore as well and have been wondering the same. I haven't tried contacting the Maryland/DC group because they meet in Laurel... anyone else here know of a Baltimore group?

[hope08]

I live in York, PA which is about 45 min from Baltimore and haven't checked out the support group in our region because Laurel is farther than I want to travel. I too would like to meet others in person who can relate to my experience. I was tinkering with the idea of starting a group closer to home. Anyone interested?

[hulagirl]

I live in the Harrisburg area and know for a fact that there are others near by out there who suffer with the same problem.

I too wouldn't mind joining a support group?????

[pennstate71]

I too am from Harrisburg. With Hershey med having a lot of IC patients as well as their Vulvodynia clinic I feel that there are folks that would be near by for support but I'm also not sure who all on here is in the area...

[graysmom2005]

Hi guys. I'm Lucinda. I live in Germantown, MD which is about an hour from Baltimore. I'm in the same boat. I just want to meet someone who knows what I'm going through. It is such a foreign disease to most, that I feel very alone most times. So I'm not far! I'm going to check out the Laurel group.

[busymomof3]

I live just south of York, PA, right near the PA/MD border. I have had vulvodynia for the past 3½ years and have been to Johns Hopkins Hospital in Baltimore, Drexel University to see Dr. Nyrijesy in Philadelphia, and for the past year have been seeing Dr. Colin MacNeill at Hershey Medical Center, although I have considered seeing Dr. Richard Marvel at GBMC.

I have most recently been in touch with a woman from another support group who lives in York, PA, who saw a naturopathic doctor just outside of Harrisburg and has been totally pain-free for the past 2 years. I have recently seen this ND, and she has reassured me that I am totally curable and that she has helped many, many women with this problem, and I am anxious to start this journey to wellness with her.

I would love to hear from others local to me as many times I have felt so alone with this awful condition. My regular ob/gyn has told me that I am the only patient in their (large) practice who has this condition. How reassuring (not!).

It all started with a yeast infection treated with an OTC medication...and it's been hell ever since.

[pennstate71]

Hi Busymomof3 - I know I just pm'd you but I just read your post and that's actually really interesting. I see Dr. Hanno at UPenn sometimes and he recommended Dr. Nyrijesy to me as the "best of the best" so I'd be interested to see your take. That was when he thought I had only general Vulvodynia and not Vulvar Vestibulitis as well, but I'd still be interested to hear your journey with these doctors. Also...since I live in Harrisburg, if you could PM me the name of the ND that would be great! Thanks

[stacie12971]

I live in Middle River, right outside of Baltimore and I was wondering the same thing. I was diagnosed in 2009. I just began the "bladder cocktails" as Dr. Duncan calls them. So far, no relief for me.. I was wondering if anyone does something special for the pain. I have the most horrible vaginal pain ( like I am giving birth) They suggested PT - but the only place that offers it is Johns Hopkins DT on Wolfe street. Working full time and in school part time- along with battling IC makes it impossible...any suggestions?

[Pucca]

HI Stacie12971 - I grew up in Dundalk and now live in the Carney area. Dr Duncan is my gyn but not my uro. For my IC I go to Dr Gordon, who used to be at Chesapeake Urology but last year left for Sinai. His office has been sponsoring a support group that started this year. We had about 4 meetings and then the next meeting the mailers weren't sent out so nobody showed up except me, and I only knew about that meeting because I'd just been to the office for an instill and saw the flyers on the wall. So the support group organizer decided we'd adjourn for the summer, what with so many people going away, etc. We will hopefully be meeting up again in the fall. We had been meeting once a month in the middle of the week at 5 pm. I don't think anyone would mind if someone who wasn't a patient came to the meetings. As far as your instills go, I hope you eventually get relief from them. They, and the PT, were the only things that have helped me much. I also take the Cystoprotek capsules and a bunch of supplements. I don't have the kind of IC with pain so I can't make any suggestions about that. I just have frequency, and sometimes discomfort. You can PM me if you want. Good luck with your treatments! I hope you feel better soon.

[Katie63086]

I am treated fir my IC at Hopkins and have been thinking about starting a support group, because the Washington DC group is in Laurel, which is to far for me. What do you guys think? If people are seriously considering I would consider setting up the support group. I am getting my Masters in Counseling and love support groups!!

Where are you guys treated?

[stacie12971]

I think that would be great. I am being treated at Franklin Square by Dr. Conrad Duncan. I was diagnosed with IC while having a bladder lift done in January of 2008. I also have pelvic floor dysfunction where it feels like my entire insides are trying to be pulled out. My daughter is also suspected of having IC. I was just informed on yesterday. Due to frequent UTI's (or so they thought) kept coming up negative. She is being scheduled for a cystiscope and instillation just to be sure. She is only 16.

[girlmomthree]

Im in the Baltimore area and Im also being treated by Dr. Gordon. I think a support group for IC is wonderful. I was actually diagnosed with IC and Endometriosis. Ive had numerous surgeries. I go to counseling on my own but it would be great to have a group of people who are actually going through the same thing I am too. I know we all have a story and just maybe we can help one another. Please let me know if you are seriously interested in moving forward with the group. Dr. Gordon will be hosting a bigger event the spring and my husband and I plan to speak on the relationship side.

[Pucca]

Hi girlmomthree, the last person to post on this thread before you was in 2011 and I don't know if anyone here ever did start up a support group. I go to Dr. Gordon also. Did you attend the last support group/seminar thing he hosted? If so, maybe we have met. I was sad that the regular support group they had there did not work out, but Dr. Gordon's seminar was really informative. I plan on attending the next one as well -- I hope to see you there.

[girlmomthree]

Hi Pucca, yes I did attend Dr. Gordon's last seminar where his cousin was the guest speaker. I was going to ask Dr. Gordon if he has any other patients who might like to join a support group because I know I could really use one. If you don't mind me asking how is life with IC working out for you? You can send me a direct message if you like. My story seems really long but I don't mind sharing.