No announcement yet.

I’m also an newbie to the site

  • Filter
  • Time
  • Show
Clear All
new posts

  • I’m also an newbie to the site

    - hope it went through and hopefully you and others are able to read it.

    I was really very scared, depressed and anxious after finding out; I was diagnosed with IC in 2005… right after having an Oophorectomy (ovaries) removal. It was the worst…. My surgery was ‘four’ hours and my stay in the hospital was ‘ten’ days. The Surgeon that took over my case told me not to have anymore surgeries.

    After all of that then the bladder burning/pain and spasms started to be really terrible. I kept telling my Gyn that something was wrong with my bladder. But, she insists that it was part of my recovery : because each time she took a bladder test it came out negative. Finally, dah she referred me to an uro, and that’s when IC came about. I've had Endo since I was 15 years old. But, after talking with other organization and other IC patient... I've probably had IC back then and didn't know it because Doctor's wasn't aware of it Well, I did find a support group in Maryland that really educated me more about it and also got a chance to meet other men and women with it...but now it’s hard to get there because of my PFD pain. .

    I'm still in a lot of pain . Currently, taking Lyrica but it's not working, also taking Cranberry 400, L-Argentine 500, Cymbalta 120 a day, Zanaflex 4mg, valium 5 mg in the vagina (has anyone tried that??? (It really calm things down some, but it puts you to sleep), Welbutrin 150 then will move up to Buderprioin XLtm 300, during bladder installations every three days (Marcaine 20cc,Heparin 1cc, Kenalog 1cc) and Gentamicin whenever I have and infection, Lidocaine. Amitriptyline made me very hungry so I stop taking it due to weight gain. Elmiron 100 made my hair thin out so stopped that. I've also had three 'Hypogastric Plexus Block' for pain was successful, but didn't last long. Tried acupuncture, and now using TENS wires all over the place but it does help some .

    Has anyone had or know anything about ‘Spinal Cord Stimulation Implant’? My insurance just approved of it. So that will be my next step. I’ve been out of work since August of 2006. I use heating pad for my lower back, thighs and periformis and ice pack for the pelvic.

    Yes, I know I’m a MESSSS, but thank GOD for the internet:

    Blessings and Hope

    Diagnose with IC in 2005

    Also have Chronic Pelvic Pain, Low Back Pain, Fibromyalgia, Endometriosis, IBS,Adhesion disease, Fibroids, Dyspareunia and Asthma

  • #2

    HI Carolyn and ! This board has been I life saver for me too! I was diagnosed last year and have had difficulties working my part time job since then. I also have a near by support group, but cannot get there due to PFD pain and work conflicts.
    I see you had used Cranberries, are you still doing that? For me that is trigger #1. Most IC'ers cannot tolerate cranberries b/c they are so acidic. You might be aware of that and the IC diet already, but I thought I would mention it and the IC diet is very clearly outlined here through the homepage. I too had no luck with Elmiron and couldn't tolerate the hunger and sleepiness that came with Amitriptyline.
    I hope you get some relief from the bladder installs. I am also on Valium, but I take it orally not the suppositories. I take one half (2.5 mgs) once in the morning and once in the afternoon and then one pill (5 mgs) at bedtime. It has helped alot with my constant spasms and pain and I can get some sleep at night without getting up constantly.

    You mentioned getting a "Spinal Cord Stimulation Implant". The main one I am aware of is the interstim. My Doctor has brought it up to me, but I am going to try several more Oral meds first. If you scan down the board you will see several areas to discuss Interstim. I would talk to some of the ladies there and read Jill's sticky's posted there before getting the surgery. That is what I have been doing and I personally am going to contact the company that makes the device to get an info pack before I consider getting it. It is not a quick fix and can have different results for each patient. It is NOT for pain and some Doc's don't clearly tell their patients that.
    I know this is so much info to take in at once.
    I was so very overwhelmed and still have days I am, which is why I am glad to have people here to talk to and ask questions when I start a new treatment. There are times I still feel like a MESS, so don't feel bad!
    I am so glad you found us and hope to talk to you again soon!
    Last edited by RAS6; 05-29-2007, 08:10 AM. Reason: spelling :)
    IC; PFD; possible Fibromyalgia; IBS;

    Symptoms: Frequency, Urgency, pelvic and bladder pain, bladder and pelvic spasms, difficulty starting urination, weak stream, incontinence, vaginal and urethral pain

    I've Tried:
    three Hydrodistentions, various Rescue Installments; 6 DSMO treatments; Pyridium Plus; Proced; Detrol (patch); Elavil; Uricet K; Elmiron; Nortiptyline; Ultram; Allegra; Ditropan; Ditropan ER; Vesicare; regular Lidocain; Neurontin; Lyrica; and few more I can't remember!
    Currently using:
    Valium; Vicadin; Proced DS; Claritin; Buffered Lidocain; Cymbalta; Baclofen; Prazosin @ night (also on Prednisone and Adderall for my joint pain and severe fatigue)
    Heating pads; frozen water bottles; A&D ointment; Poise pads; IC dieter since 8/06; yoga; imagery & relaxation CD, Mindfullness, self healing CD's; hot baths; seat cushion; prayer
    I am 28 yrs old, dx'ed in '06, still trying to get my health undercontrol!!