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Recently Diagnosed with IC & Confused

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  • Recently Diagnosed with IC & Confused

    From what I've read from others, I'm apparently fortunate that I was diagnosed within about 1 year of symptoms starting. Before going too far, I must let you know that I'm 55 yrs. old and had a hysterectomy 20 years ago (ovaries were left, though). I started complaining to my family physician about a year ago of pelvic pressure/pain. At the time of my annual "well woman" exam, the PA said that my bladder had fallen a little bit and perhaps that was what was causing the pain. She recommended that I see a gynecologist. A couple months later when I finally had an appt. with the gynecologist he listened to my complaints and then said very smugly "Well, yes, you're bladder has fallen a little bit, but it shouldn't be causing the pain you say it is". The tone of his voice was maddening. So, I decided that I needed to find a female gynecologist as I knew she would know what I was trying to describe. I'm sure you all know what I'm talking felt like when you first start your period and everything feels like it's going to fall out...just a constant, gnawing pain. Plus, I bloat up and look like I'm 8 months pregnant. Well, I made an appt. with a female gynecologist and waited for another 2 months. On the day of the appt. her office called and cancelled my appt. because she was sick and then was going on vacation for 2 weeks! I was completely stressed out by this point as the pain was pretty much daily now and I had done a lot of research on the internet. As I self-diagnosed myself from readings, I was now scared that I had ovarian cancer as it seemed I had all the symptoms. PLUS, we were going on vacation the next day. Sooooo, out of desperation they gave me an appt. with one of her collegues, another man. Not to sound like I'm bashing men, but how can they possibly understand what you're describing?! He reassured me that I didn't have ovarian cancer & scheduled me for a CT scan after vacation. The CT scan appeared to show diverticulitis. So, I then had a colonoscopy. I did have diverticulitis and was put on 2 antibiotics for 2 weeks. However, the pressure/pain did not diminish. The gastroenterologist suggested that I see a general surgeon for possible exploratory surgery. So, I made an appt. w/surgeon. He wanted a barium enema done. Afterwards he asked me what I was scared of, i.e., cancer, surgery, etc....I thought about his question for a few seconds and said that what scared me the most was living this way the rest of my life. He suggested getting an antidepressant and said that before any exploratory surgery was done he wanted me to see a friend of his. So, he made an appt. for me with a Urogynecologist (didn't know there was such a thing!) He diagnosed me with IC, although he said he doesn't want to officially put that on my record yet, as he said once it's on your medical record it's with you forever. He also said the pelvic floor muscles are spasming. I'm now on Elmiron (have been on it for about a month) & Elavil. I also have physical therapy every 2 weeks and do the Kegle (sp?) exercises. I'm willing to try any and everything suggested, BUT here's what perplexes me at the moment.....everyone seems to have painful urination. I do not. Yes, I do have to visit the restroom a lot (didn't realize how often I go until I really started to think about it) but it is NOT painful to go. Also, does anyone out there have the pelvic pressure/pain? I also have pain on both sides of my abdomen & I know this sounds crazy, but the last couple of days I've been getting very sharp pains from the belly button down. I can feel what I think is the urethra. Working is becoming harder and harder as it's hard to sit behind a computer all day. Some days I can hardly get in & out of my car. I spend many nights crashed on the couch with a heating pad on my abdomen & a pain pill. Well, sorry to rattle on for so long, but I am curious if there's anyone out there with IC that doesn't have painful urination. It makes me wonder if I do indeed have IC?! Thanks ahead of time to anyone who responds to this. Eileen

  • #2

    I don't usually have painful urination either. My first morning urination can sometimes be painful, but for the rest of the day, actual urination is not usually too painful... although I can feel my sore bladder moving as it contracts to let the urine out. I just don't have the classic burning with urination that many ICers have.

    *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
      to the ICN, Eileen...So glad you found us.

      The only time I have painful urination is when I have a UTI. Otherwise, what I feel when I urinate is relief.

      Shopping??? Did someone mention shopping? I'll get my hat... ;-)

      Where I can be found most days.

      Link to the ICN Patient Handbook:

      Link to the IC Diet:

      IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.


      • #4
        I have pelvic floor issues as well, no pain peeing too . When your bladder hurts it spreads to your pelvic region . Sitting in a chair is the worst . Walking , stretching ,baths, TENS unit helps as well
        home installations
        urelle as needed
        ultram twice daily
        vicoden as needed
        ambien at night
        clariten in morning


        • #5
          Hi Eileen,
          I don't have any painful urination either. I do get the bladder pressure and pain but Elavil seems to keep that under control. I hope you get things sorted out soon. Q.


          • #6
            I can't say I feel relief after urinating, either, but I thank you for responding.


            • #7
              Eileen, try Elavil it does take away that pressure/pain and you will feel better after urination. Until I started Elavil the pressure didn't get better after urination either (okay, maybe for 5 minutes I felt better). Elavil has some side effects so if they bother you Nortriptyline has less. q.


              • #8
                I don't have burning either except in the morning with the first urine.
                By the way, welcome.


                • #9
                  I've never had pain of any sort with IC. Just a lot of discomfort - used to feel like an almost never ending UTI; like I always had to pee, but peeing didn't relieve the feeling.

                  Diagnosed August 2001

                  Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)

                  Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

                  I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.


                  “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

                  “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy


                  • #10
                    Everyone is a little different with IC. And there are no answers yet on that one. It doesn't mean you don't have IC. Everyone can interrupt pain different. Also they think that we might find someday that there might be different types of IC, and/or different levels of IC.

                    Well I never really had much pain associated with specifically urinating either. I had constant burning pain all the time. And pressure like a strong discomfort like I had to go or my bladder was full all the time. Going did not help at all.

                    One thing also-as you live with the pain, before you get a break or get it under control, it is true that your whole pelvic area can start hurt and then it does get confusing, about what is hurting. The longer you live with pain, your whole body can start to react. I know that you start to tense up without knowing it to protect your bladder area. It sounds like your doctor has already discovered this and treating you for this. As many IC people have PFD ( pelvic floor dysfunction/spasms).

                    I also had the stomach/pelvic bloat. I did not have it right away. It developed after I lived with the pain for awhile. It went away after I got the pain under control. I have no idea what it was, but I also was checked for a million things to rule out before I was diagnosed with IC. In my case they did't find anything else- after talking with my doctor, it might have been some kind of a a body inflammation response to pain.

                    Hang in there, you will find out what is going on and what helps. It does take forever, which stinks. It's important to have a good doctor that will be partners with you and go step by step in ruling things out, this is hard I know because in the meantime you are in pain. It sounds like that is what is going on with your doctor so that is good. . It also takes awhile for pelvic therapy and for the Elmiron, to work, or know if they are going to help. Don't be afraid to ask your doctor for pain meds, until your other stuff starts working. Since Elmiron is documented to take 4-6 mos to works if it works for you. Prescription Pyridium Plus helps a lot of people, or the over the counter Pyridium like AZO. Also prescription painkillers can help.

                    Good Luck! sorry I go on an on in my responses LOL I can never seem to give a simple answer!
                    Diagnosed with IC in 9/2005,
                    Currently doing good, taking breaks from Elmiron, reduced amount.


                    • #11
                      I don't hurt to urinate either. I feel pressure in my pelvis, but pain, bawling my eyes out pain, with my period. I constantly feel like I have to pee (and I mean it never goes away). I am on several meds to help me sleep, and now I can sleep better. I'm miserible, but I was only diagnosed 3 weeks ago. You guys here reassured me it takes time and I will work with my doctors, take my meds, work on the IC diet, and try to feel better. I think I would handle pain better than this constant need to pee. But then the pain hits with my period and that is just unbearable.

                      I'm sorry to hear you are struggling so mcuh. Please keep you chin up and don't give up!
                      [SIZE="1"][B]Be well, Alyssa :hi:[/B]



                      • #12
                        me too burning when peeing ...except when uti or first morning urine when I go lay back down and my bladder is flat against itself.YOOOWWW!! I will tell tho, I have horrible burning and pain in my urethra during instils...and I DO have ic. So it goes to show ya that were all different but have commonalities pelvic pain, urgency etc. So hang in there girl, and keep on going til you get the relief you need Hugs, Deb
                        [FONT="Comic Sans MS"] [/Had some kind of bladder surgery at age 8. Severe frequency since a child. Diagnosed with ic in 2000.
                        Hysterectomy for severe carcinoma insitu
                        1994..1997 ovaries removed
                        First hydro 2005 inflamatory polyps removed,trigonitis,urethritis, ic
                        severe urethral stricture.April 2008-gallbladder removed..BRUTAL!
                        Hashimotos throiditis
                        angiomyolipomas of the kidney
                        Medications:,atarax50mg,prilosec 20 mg,. Oxycontin 10 mg.up to 3xday, 20 mg oxycontin at bedtime.zocor 40 mg.,synthroid 112.mcg a day.
                        I use a natural compounded hormone cream made for me, with estrogen,testosterone and progesterone.

                        'TO PEE OR NOT TO PEE' is definately NOT the question for me!!!!!!! :

                        Big hugs to all my ic friends!


                        • #13
                          wow, sounds like u have been through a lot! hope ur feeling a bit better today. i was diagnosed in '97 with IC, and "undiagnosed" in '06. I never had pain with urination either. To be honest, ur symptoms sound a lot like Pelvic Floor issues. My advice is to find the most reputable Physical therapist you can find. I had three, with the last one (Rhonda Kotarinos, IL) being the most helpful for me in particular. She talks about myofascial pain and trigger points, and basically told me i had "crappy connective tissue" which actually made me feel a lot better than having a faulty bladder or whatever! For me the way I've come to understand it, I was doing a lot of muscle holding and guarding which contributed to chronic pain. The location of the pain also contributed to my anxiety, given the sensitive nature of it all. I wish you the best.


                          • #14
                            I also never had pain with urination
                            Onset of symtoms November 1, 2006

                            Diagnosed December 8, 2006 with cysto/hydrodistention... Gradual relief with elmiron around month two, keep feeling better and better. and then remission

                            2008 Update...still in remission

                            Diagnosis: IC
                            Meds: Elmiron 300mg/day, hydroxyzine 25 mg 1x/day

                            Myspace: Add me! Im always looking make new IC friends.


                            • #15
                              I have never had pain with urination except on the rare occasions when I have had infections.

                              Are you following an IC diet? You'll find it in the Patient Handbook --- if you're not, I suggest you begin today.

                              Warm healing thoughts,
                              Stay safe

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                              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