No announcement yet.

Newbie and scared!

  • Filter
  • Time
  • Show
Clear All
new posts

  • Newbie and scared!

    Hello, I have been lurking around for a few days, a little scared to post; just recently diagnosed last Thursday, 2/15 and I can say I'm pretty overwhelmed right now. I'm attempting the diet, and I'm so depressed and scared and mad and upset and frustrated....etc! I've been suffering for about 6 years, pretty much since after the birth of my son and a horrible kidney/bladder/UTI that landed me back in the hospital for the first two weeks of his life.

    I have constant bladder pain, pelvic muscle pain, as well as fibroids in the uterus, and always feel like I have to go to the bathroom. I had been going to the same gyno for years, who told me that I would just have to live with it, and if I ever wanted to do something about the pain, he would do "exploratory" surgery, but he didn't think he would find anything. I also suffer from ovarian cysts, so all that combined in my midsection is pretty intense. After my last exam, when it was so painful that I cried, I finally decided to get a new doc. I called in November and it took until January to get in to see her. She listened to my complaints and was so kind and compassionate and caring, and she did a pelvic exam and the first words out her mouth were "I think you have IC". I had never heard of it! So, she scheduled me for the potassium sensitivity test on 2/15, which of course I failed (I guess thats the right terminology?). Searing, horrible pain!

    I also have the vulvar pain (I can't remember the term, though). My doc, who has been really great through all of this, wants me to try the IC diet and see how it works before going into Elmiron. I"m willing to do it, I'm just freaking out about all the things I'm having to give up - I didn't realize how much out there can irritate the bladder.

    I also suffer from migraines and take a medicine called Topamax - which is a medicine that was actually developed for people with epilepsy. It seems to be working, however, it dehydrates you really fast, so part of taking it is you have to drink lots of water to stay hydrated. Not so great for someone who has a painful bladder! I discovered in my label reading in the past few days that one of the waters that I drink to help replace electrolytes has potassium in it, so I guess I'll have to give that up? I'm still learning the diet - I'm craving chocolate so badly, I can't stand it!

    It seems like there are so many people out there with this condition - and it's nice to know I'm not alone, but I still feel totally alien right now and abnormal. How long does it take before being on the diet shows some results? My doctor said 6 weeks - and then gradually start reintroducing foods to see the reaction. I haven't really noticed any difference yet, but like I said, I'm still learning what I really shouldn't be eating. I looked for Prelief at Walgreens, but couldn't find it. Should I wait to try that until I get used to the diet? So many questions - it looks like a ton of great people here, so I'm hoping that someone can offer some good advice and a shoulder to lean on. I'm 36, and recently lost about 10 pounds because of the topamax (one of the side effects), so I don't really want to lose any more weight if I can help it, so I need good healthy foods that won't make me waste away to nothing.

    And, I'm not so good with the image stuff, not sure how to add pics? Anyway, sorry for the long post, looking forward to talking to anyone.
    Diagnosed IC 2/15/07Uterine fibroids
    Ovarian cysts
    Topamax for Migraines

  • #2

    Being diagnosed with IC is overwhelming, frustrating... everything you mention feeling, I think all of us have felt that way at one time or another and totally understand those feelings regarding being diagnosed with a chronic disease.

    Have you checked out our Patient Handbook at yet? That's where I usually tell our new folks to start, since it's packed with information regarding diagnosis, the various IC treatments available, and some good self-help strategies to use.

    Sometimes Topamax can help IC symptoms -- I tried taking it for another reason a while back, and it didn't help me. In fact it made me so dizzy my hubby wouldn't let me shower alone for fear I'd fall and kill myself in the tub. However, some say that it helps; sounds like you may not be getting any relief from it yet though. Hopefully it is helping your migraines at least....

    As for the diet, yes, it can take a while to note differences. I guess it takes a while for all of the irritants to come out of the body. However, it is important that you stick to it as best you can in the beginning, so you know what foods you should avoid personally. We are all different. Some can eat certain things no problem, while if someone else had just one bite of that same thing, he/she would be in a huge flare within hours!

    *Diagnosed with severe IC in 2004
    *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
    *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
    *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

    **I am not a medical authority nor do I offer definitive medical advice. I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.


    • #3
      First of all, I'd like to welcome you to the IC Network. You have come to the right place to learn about IC. Prelief is usually found with the antacids. There's a link to their web site on the upper left hand corner of this page --- if you email them, they will let you know where in your area it's available.

      The diet isn't bad once you get started on it. I concentrate on those foods I can have and have become accustomed to avoiding some things. I know it's overwhelming at first, but once you feel better, you can begin slowly adding back some of your favorite foods. Most of us can have at least a few of the foods on the problem lists.

      Please don't try to eliminate potassium from your diet; a potassium deficiency can be very serious. I take a physician ordered potassium supplement full time with no problem. I think of it this way --- if I have a scratch on my hand and rub salt on it, it's going to hurt --- but if I put that same salt on an egg instead, I can eat it with no pain. Potassium instilled directly into the bladder can cause pain for an IC patient, but eating it in a food is an entirely different story.

      I hope you begin to feel better soon. I know how frustrated you are feeling.

      Warm hugs,
      Stay safe

      Elmiron Eye Disease Information Center -
      Elmiron Eye Disease Fact Sheet (Downloadable) -

      Have you checked the ICN Shop?
      Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

      Patient Help:


      Diet list:

      AUA Guidelines:

      I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

      Anyone who says something is foolproof hasn't met a determined fool


      • #4
        Welcome to the board. I'm glad you got up your nerve to post. Never feel shy here, we're all here to help each other! I'm glad that you changed doctors. That was going to be my first line of advice to you. Nobody should be told they'll have to live with the pain, and surgery is not necessarily the very first thing that should be considered! grrrrrrrrrr.....

        At any rate, I understand what you're going through. It's devestating to find out that you have an incurable, chronic illness. Suddenly your whole life is consumed by medications, watching each and every bite that you put into your mouth, reading all those labels, elmiminating every food that you love!!!

        Jen and Donna gave you great advice and I really don't have anything new to add. I just wanted to you to the board and tell you we're glad that you're here!

        I hope that you feel better soon!

        Hugs, Sandy
        *IC-- Summer 2004; PFD--October 2005
        *Fibro--Fall 2000; CFS-- Fall 2000
        *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

        Total Abdominal Hysterectomy--adenomyosis--9\08

        04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.


        • #5
          Thank you all for your replies and words of wisdom, I do appreciate it! I know I have lots to learn, but it's so great to know this site is here to help. I actually got this link from one of the girls on my topamax support board - I'll have to make sure to thank her!

          So, it sounds like it might be okay to drink some of the SmartWater that I have, even though it has potassium in it? Of course, right now, I'm concentrating on learning the diet and eliminating the "bad" foods so I can start feeling better, but I'll make sure that I don't become deficient. It sure seems like a hard road ahead, trying to find a balance between eating foods that don't cause the flares, and still staying healthy and getting the right nutrients. I'm already sick of chicken and I love chicken. I just really don't know what else to eat - I'm not a real creative cook. I've had some pasta, but I'm a huge fan of red sauce, so having pasta without that is really not any fun and doesn't seem to fill me up. What I'm having the most trouble with is snacking. What can I have to curb the appetite between meals? I had some pretzels yesterday because that seemed to be all the vending machine could offer me that was okay. I need to get to the grocery store to get veggies to bring to work to snack on, but one can only eat so many veggies, right?

          I still need to check out the diet section here, just so little time with work and being a mom to a demanding 6 year old and keeping my hubby in check and running my household - I'm sure you can all relate in your own ways. Of course, the stress doesn't help anything either.

          I had a little time to check out the handbook last night, but not much. I know there's lots of great info there, almost overwhelming the amount of info, so bear with me if I ask things that are obvious in the handbook.

          Hopefully, I can arm myself with the knowledge to get through this - I had some eggs for dinner last night, that's supposed to be "safe" right, and today everything hurts, so does that mean those are bad, or is it to early to tell? UGH - how do you all do it???????
          Diagnosed IC 2/15/07Uterine fibroids
          Ovarian cysts
          Topamax for Migraines