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Help with a Urologist in Mass.

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  • Help with a Urologist in Mass.

    I was diagnosed a year ago with I.C. I was also diagnosed with fibromyalgia, pelvic muscle atrophy, myofascial pain syndrome and short type pelvic floor.I have had 4 surgeries (exploratory surgery, hysterectomy, an operation for adhesions and a repair for a rectocele) and multiple procedures (bladder infusions, trigger-point injections, trigger point physical therapy and also nerve blocks) I am on all different kinds of medications. I also went 4 months having to self-cathering myself because I went from urinating to much to not being able to urinate on my own. I have been to 3 different urologists who just don't understand I.C. I am now seeing a urogynecolgist and also a pain management doctor. I lost my job after working there for 14 years. I had to get a lawyer in order to win my appeals for long term disability. After six months I finally started to get long term disability. I applied for social security back in January and haven't heard if I was approved or denied. The hardest part is trying to get my doctors to see right now that I just can't work. It is very hard for me to sit, stand or walk for any length of time. I am going to see a psychiatrist because the only thing I seem to do is cry. I was hoping that someone could help me with finding a doctor in Mass that is understanding with I.C. patients. Also if there is anyone who is going through the same things I am. Thank goodness I have a very understanding husband. We have not had sexual relations in a year, because of all the surgeries and that I am afraid because of the pain. PLEASE ANYONE WHO READS THIS AND IS GOING THROUGH THE SAME AS MYSELF, PLEASE RESPOND.
    Last edited by joanne48; 06-22-2007, 02:41 PM.

  • #2
    Joanne, Welcome to the ICN!

    I'm so sorry you are going through so much pain! I do understand. This is a nice place to come for support. I saw a Uro in Natick, MA who is great with IC. With your history, a Urogyn may be a better choice. There is a very large support group that takes place in Natick where you can meet other men and women going through similar situations and find other Doctors. I also saw a wonderful OBGYN who deals with pelvic pain associated with all kinds of disorders. He is in NH.

    To reach the the leader of the support group you contact, Molly Glidden:

    Boston/Metrowest IC Support Group Leader
    Meetings/Katherine Kennedy Senior Center
    Natick, MA 01760
    Phone: 508-655-4726
    Fax: 508-650-5999
    [email protected]
    Interstitial Cystitis/ nonprofit support group

    We'll try the best we can to support you through this.

    Warm Hugs ,

    Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

    "One hour at a time, this was NOT my American Dream but it has to work out somehow."

    I also have some journals of my journeys, past and some present at: and

    Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.