No announcement yet.

Scared and hoping it is not IC... but could be? (longish)

  • Filter
  • Time
  • Show
Clear All
new posts

  • Scared and hoping it is not IC... but could be? (longish)

    Hi Everyone,

    My name is Maia. I am 28 and live in Portland, Oregon.

    For the past few months I have been dealing with what I thought were UTI infections. I would treat it with cranberry pills and it seemed go away, only to return a few weeks to a month later.

    Two weeks ago it hit pretty hard- urinating sometimes every fifteen minutes, ache in pelvic area, ache in lower back and thighs, and that constant pressure in the bladder. I do not have pain when I urinate, and I would not describe the pain as "sharp" or "stinging." Rather, the pain I have is a really uncomfortable ache in pelvic area, lower back, and thighs.

    On January 18th, I did a UA and was told it tested positive for a UTI. I was put on an antibiotic (Bactrim) for five days. I took it for five days and it did not do anything. I ended up going into urgent care a week ago (Jan. 22), as the pain in lower back and legs was feeling worse and I was still urinating frequently. They ran some blood tests, took a urine sample, and even did a pelvic exam. Everything came back perfectly normal. The nurse told me that I appeared perfectly healthy, but the symptoms I am having worry her. She ended up referring me to a urologist, which I will see next Friday. I was sent home with Oxybutynin (5mg tablet, twice a day) and an OTC medication PHENAZOPYRIDINE 95 MG TABLET, that provides urinary relief and helps with frequent urination.

    I have been taking the Oxybutynin for a week now, but I was supposed to only take the other OTC medication for the first two days. Yesterday I started to feel symptoms again and I am back to urinating every 20 minutes or so, and that dreaded ache in my lower back, thighs, and pelvic region has returned. The only difference (after feeling better for a few days earlier in the week) is that I drank coffee (which I don't do that often) and I am about to start my period.

    I ended up taking the urinary relief medication yesterday and will be taking it again soon. It seems to help with the constant pressure in the bladder feeling.

    I am really scared, because I have had both a nurse and my naturopathic doctor tell me that there may be a chance that I have IC. I don't want a painful lifelong disease like this. The thought alone of being in chronic pain is causing me a lot of anxiety. I have printed off the IC diet guide and I am going to follow this for the next week until I see the urologist and hopefully get some answers. If it is IC, I will work with my naturopath to manage the symptoms as well (I prefer holistic medicine when I can use it).

    I once had a friend (she was a lot older than me, in her early 50's, and she had IC. In fact, she may have once been a member here, which is how I remembered to find this support group. I remember staying at her house and she would be in so much pain. I felt so bad for her and I thought to myself, "I hope I never get that." Here I am 12 years later and may have IC.

    Perhaps I am jumping the gun, but so many of my symptoms point to IC. I would like to be proven wrong next week, but I want to be prepared to get the bad news.

    I feel so overwhelmed and upset. I don't want to live this kind of life. I work in mental health as a residential counselor and I am very passionate about my career, going back to school in a year for a graduate degree in counseling, and getting involved in an alternative, body based counseling program (Hakomi) in the fall. I do not want this to shatter these dreams.

    Thanks for listening,

    P.S. I deal with PTSD and anxiety, so I do take medications for this. I wonder, has there every been a connection between long-term psychotropic medications and IC?
    "We do not grow absolutely, chronologically. We grow sometimes in one dimension, and not in another; unevenly. We grow partially. We are relative. We are mature in one realm, childish in another. The past, present, and future mingle and pull us backward, forward, or fix us in the present. We are made up of layers, cells, constellations."

    — Anaïs Nin

  • #2
    Hi Maia,
    I see you read the posts to jbean and I put a long one there you might want to read or probably already did read. I just wanted to say welcome to the board and try and not have too much anxiety before you see the urologist. I know easier said then done. I want to remind you that alot of the cases on here are the worst ones and not all people with IC are unable to leave their houses, those are the worst of the worse cases. You were right in your previous message to jbean maybe not to spend too much time here until you have a diagnosis. Or if you do spend some time, spend it looking at the different methods and treatments etc and not individuals flares etc. I am like you and will spend hours and hours self diagnosing but at some point I have to walk away because I get totally freaked out!
    This is a great place for support and questions you might have.
    Good luck with your uro appointment and let us know how it goes!

    P.S. I don't think there is any connection between anxiety meds and IC other then the fact that lots of people who have IC also have anxiety. I have had anxiety in the past but am not on meds now because my anxiety has quieted down as I've gotten older. It was at its worst stage in my 20's. Now i only have a few episodes a year where I feel like hmmm do I need to go see someone?

    Gelnique for frequency/urgency - works great
    Macrobid after sex
    Prilosec, continuous birth control pills
    synthroid .088mg, mucinex-d, restasis

    Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

    Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

    IC Diet Link:
    AUA 2011 Guidelines to diagnosing and treating IC overview-
    AUA 2011 Guidelines to diagnosing and treating IC PDF:
    Great treatment flowchart on page 19 of the pdf


    • #3
      Hi Maia,

      I have to echo what Cindi said, there are many of us who lead full, near-normal lives despite having IC. I hope it turns out that you don't have IC, but if it ends up that you do, just remember that most people do get better following diagnosis & treatment. Odds are you'd be one of them!

      Good luck at your appointment next Friday. Let us know how it goes for you.

      "The happiest people don't necessarily have the best of everything; they just make the best of everything they have."


      • #4
        Scared and hoping. . . .

        Just echoing what others have said. I won't go into detail but I have completed three degrees, conceived and given birth to a beautiful child, sustained a wonderful marriage, enjoyed great friendships, retained powerful spirituality, and continue to hold a very full-time executive career while dealing with IC as well as fibromyalgia and chronic myofascial pain dysfunction. It is not always easy, and in my case I have chosen some more radical approaches than others as a means of battling the diseases. (I am also blessed with very good health insurance and reasonable financial health.) There are and have been days when I could not get out of bed, and it is when I got to that point that I made some of the decisions about the more radical treatments -- but we are all different and some of us respond to different therapies in different ways.

        What I have found helpful: reading and researching; being on this board (I've only recently started posting but I've been reading for years); many hot baths; acknowledging that I have the disorder (I refused to accept it and the other diagnoses for a long time -- that didn't help anyone or anything); and following the recommendations of my physicians.

        Stay strong and pursue the medical path -- knowing what you are battling really will make a difference. All of us are here to listen and lift you up to the best of our abilities: we've been there, we understand, and we know that this is scary but we also know there is hope.