No announcement yet.

bit depressed after diagnosis

  • Time
  • Show
Clear All
new posts

  • bit depressed after diagnosis

    Hi, I was diagnosed three days ago, and i think it's setting in now. The pain seems worse since the hydro, i feel like 'okay this is what theyre talking about'. I just want to know, has anyone got any advice on dealing with the depression?! I feel really really sad, like im grieving. went to the supermarket yesterday and realised i cant eat all the things i used to buy, got to last night and realised it was the weekend but there's no point in trying to socialise or go for a meal or drink to cheer myself. i feel my life in now empty, and the things i kind of defined myself by, like being a woman who loves an espresso or spicey food or traval, are gone, and i dont know who i will be from now on. i also have that horrible 'sick person' feeling, i am walking like someone in pain and feeling all needy and dependent on my partner. This is not familiar!
    im really sorry to be morbid and to be such a leech, i hope i can help others when im in better shape myself, but for now, any words would be welcome. im not clinically depressed or anything, just very sad.

  • #2
    My first suggestion is to see a professional counselor --- it's not unusual to feel grief when you have been told you have a condition that currently is not curable.

    Right now you are recovering from a surgical procedure; you should feel better in a few days --- if you don't, I suggest you see your doctor to rule out infection.

    Don't give up on travel --- I have been to Hawaii several times since my diagnosis, plus have made three driving trips to my home town in the midwest from my Oregon home and numerous ones to California. We live less than two hours from the coast and make several trips there every year.

    Try to concentrate on the foods and drinks you CAN have. That makes the diet much, much easier.

    Sending healing thoughts,
    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


    • #3
      Hi Leonie,
      I felt very much the same when I first got IC. My life has changed a lot, but I've gained a lot of it back once I got a solid treatment plan.

      I don't eat spicy food or drink coffee anymore, but I do still travel. Since I got IC, I've been to San Diego, Houston, Raleigh, Portland, Ashland, Vancouver BC, Chattanooga, Málaga Spain, and I'm currently planning a trip soon to Quebec QC.

      I've found that a steamed milk in a cafe still has the element of being out & about. Many times, I'll order a croissant and a steamed milk with either sugar or honey. At home, I mix Pero (a grain-based coffee substitute) with sugar into hot milk and while I didn't like it in the beginning, now I do- more for the feeling of holding a hot cup in the morning.

      My IC is severe, I was voiding 60x a day when I first got sick, could barely hold down my job, couldn't wear pants, couldn't exercise, couldn't sleep more than 20 minutes at a time and cried constantly. And I was even more upset when I tried Atarax, which gave me a pounding heartbeat, and Elmiron, which made my IC worse. I thought, "I've now failed two of the three treatments my doctor has offered me. Am I going to be stuck like this?" Fortunately my doctor referred me to Stanford and the doctor there gave me instillation treatments of Heparin, Marcaine, and Sodium Bicarbonate to do at home and those have given me my life back. I teach full time, attend church, exercise when I'm not too busy (yeah, I need to make it more of a priority), wear jeans every day just because I can, and travel. For travel, I do get a studio apartment or shared apartment when I'm not visiting friends , and do my own cooking - so I can stay on the diet easily while I'm away. I've also found that traveling alone is easier if I go to a language school that can make arrangements for me and serves as a safety net in case of problems.

      Donna's suggestion of counseling is a good one. I had sessions with a medical social worker who understood chronic illness and he helped me enormously. One of the things he suggested for the loss of favorite things and activities is to look for the essence of what it meant to me.

      So, when I wasn't initially able to travel, I thought about the essence of travel for myself and it's mainly about language learning and meeting people, so I've taken a local sign language class and gone to to find people in my area who are also into that. Met some great Deaf & hearing people to sign with that way! I've also been using the Rosetta Stone to learn French and got a "French in 10 minutes a day" (ridiculous, but good for introductory stuff) and now that I'm better, I'm going to a language school in Quebec to learn more. They arranged me a studio apartment with a kitchenette so I can stay on the IC diet. I do still have flares, so I usually plan to spend a bit more time in one place when I travel, so if I lose an afternoon or a day, it's not a big deal.

      It took a while to get me to this point, but it did happen in spite of a really bad case of IC. Most IC patients do not need the extensive treatment plan I have, and get better faster than I did. My mom has IC and only takes low dose Elavil for it. A friend at work was diagnosed and she only takes low dose Elavil and follows the diet and feels completely back to normal. I'm telling you these things to give you hope, because when I was first diagnosed and began reading, I felt like my life wouldn't have anything good in it again. I'm glad to have been wrong on that one.

      Come here often, ask for support, and don't give up!! If the boards or readings scare you, please keep in mind that most IC patients have found treatments that work and are out living their lives & don't need to come here. And chances are good that once you get your treatment plan established that you'll be one of them...

      Wishing you relief soon ,

      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.

      New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
      Source - Pinterest

      Current treatments:
      -IC diet
      -Elavil 50mg at night
      -Continuous use birth control pills (4-5 periods/year)
      -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
      -Pyridium if needed,
      -Pain medicine at bedtime daily, as needed during the day several times per week
      -Antibiotic when doing an instillation to prevent UTI
      -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
      -Dye Free Benadryl 50 mg at bedtime
      -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
      -Managing stress= VERY important!
      -Fur therapy: Hugging the cat!


      • #4
        I felt exactly the same in the beginning as you do now. I felt a very strong loss of who I was, or who I thought I was. I did end up seeing a counselor because after the sadness and self pity I started getting really angry that I had this condition to begin with. It has helped a lot. Kadi gave some really good and inspirational advice here. I don't miss my caffeine or wine anymore and am used to ordering different things when I eat with friends now and it doesn't bother me much at all. It takes time to adjust, and sometimes help from a counselor.


        • #5
          thanks (again) guys, feeling a bit more positive now. I suppose there's one BIG silver lining in that I used to struggle to keep weight off and now that ive had no booze/curries/tortilla chips/chocolate in six weeks I find i can eat like a demon and not gain an ounce! i have a new croissant addiction, couldnt look at the things before.
          I will indeed seek some counselling. Itd be nice to have a counsellor who understands IC but there's scant chance of that so I suppose I will educate them. But yes, it'd be really good to talk. Friends dont really get it, anyone Ive told seems to think 'sure it's not cancer so what's the biggie'.
          Ive always thought that the best thing and the worst thing about human nature is that we can adjust to anything. I'll adjust!


          • #6
            Yes, it can be depressing when you find you have something.. I know I was depressed, and now I feel like I am ok with it. You will get used to not having those foods, trust me. And I think your body will thank you for it. You may be able to add it a few foods in moderation that you thought you could not have anymore. If you find your depression is not getting better, you should go see your doctor. There is an anti-depressant that works great for both IC and depression. Also talking to a counselor like Donna said would be a great help. Hang in there and know that you have friends here!
            -Pammylynn Rose
            Wishing everyone a pain free bladder day!

            Painful symptoms start in May 2011
            Diagnosed with IC in Aug 2011

            Axert (only for rare migraines)
            Strict IC diet
            Gluten/dairy/egg free diet


            • #7
              I know how you feel too! Count me on that one !!

              Like Kadi said though ( by the way Kadi your post made cry! lol ..good tears though.. you are wonderful ) when you find a good treatment plan it makes all the difference-- and even people with severe IC regain life back

              I used to sit in my bed and sob because the stories I read scared the pants off me. Then I read one day what Donna said about people with IC who do not need the support of the boards because they have found normalcy again... I had a way different perspective after that.

              Its true- because I am now one of those people that is out and about living life normally again ... Although I still come to the boards because when I feel good I think its so important to tell others there is HOPE and LIFE with IC. I still get symptoms here and there, so even I still need the support of others too

              When I was first having trouble I should have sought a counellor--- because NO ONE understood. I thankfully got myself out of depression, but it took a long time.

              IC is no fun but it doesnt always have to define your life..there is hope

              28 yrs old,

              I have little to no problems now with my bladder, unless I am very stressed out, I forget to take Elmiron for a few days, or I eat or drink something that I know is a trigger...(i.e) like eating a tomato or drinking tea.... Took a long time to get here, but it IS possible to feel good again I just want people who are new to know that IT CAN get better, and for every one person who is suffering, there are hundreds of others who feel GREAT because they have control of thier IC.

              What Works: Tylenol 3's, Pyridium, Elmiron (Going on 4 years now!) HOT showers!!!

              Medications/ Vitamins: Elmiron-100mg 4x's daily Tylenol 3's/Advil (flaring) Vitamin D, WILD salmon oil 4x gels in the morning, Women's ONE a DAY multivitamin (the gummy kind doesn't make me flare) and PROBIOTICS!

              Me in my graduation gown!