No announcement yet.

Long-time lurker taking the plunge and saying hello (warning: lengthy!)

  • Filter
  • Time
  • Show
Clear All
new posts

  • Long-time lurker taking the plunge and saying hello (warning: lengthy!)

    Hey everyone!
    I have been lurking on this site since 2006 and finally have decided to register and get involved, and with everything going on lately, it's nice to know I'm not alone. My very wordy story:

    I was healthy as a horse as a child, rarely sick with anything besides the common cold or ear infection. I was in nursing school when my symptoms started. Symptoms started in 2004; frequency/urgency, bladder pressure/very mild pain, and painful intercourse. Went to multiple doctors (obgyns, internal medicine), and they were more concerned about the painful intercourse at my young age and brushed off the bladder complaints, even though my bladder was driving me crazy. I had pelvic exams, std tests that all came back negative. I had countless urine cultures and urinalyses come back completely normal. I knew it wasn't in my head, even though I think many of those doctors thought it might be.

    When I got referred to another obgyn about the painful sex, he finally asked the question that led to the road of diagnosis: how many times a day do you go to the bathroom? As I started explaining how my life revolved around the toilet, he kept asking more questions that nobody else ever asked and I felt as if he was reading my mind! He understood! He said those magic words: "I think I know exactly what you have", something called interstitial cystitis. This was in Feb/March 2006, a year and half after the symptoms started, and I was almost done with my 3rd year of nursing school (IC was not taught at my nursing school ). He conducted the potassium sensitivity test, which was immediately positive. The potassium felt like acid eating away at my bladder instantly. I can't describe that pain. I was then referred to a urologist.

    Based on my symptoms and potassium test, the urologist thought I was a classic case IC patient and did not see the need to do a cystoscopy at that time. He put me on Elmiron (which I still take), Detrol (stopped taking due to retention), and Elavil (stopped due to severe drowsiness). I had some urodynamic testing done at the time but due to the retention from the detrol, they couldn't get good results. The Elmiron started working about 5-6 mo. later and along with dietary changes, I went pretty much into a period of remission for the rest of 2006, 2007, and the first half of 2008.

    The pain started getting noticeable in 2008, and one day I finally ended up in the ER because of it. I was referred to a urologist (I had moved away from my last one). I should have known this was going to go nowhere when he walked in the room and said to the effect that young people don't usually have IC and if they do, it's very mild. He diagnosed me with Pelvic floor dysfunction (still dealing with) and scheduled pelvic floor PT and an in office cystoscopy. Well the cystoscopy was excrutiating and I was screaming at him to pull out the scope within seconds, needless to say, he didn't get a very look inside my bladder. With him, I got a couple trigger point injections and finished a course of PT and things were slightly better. I stopped seeing him asap due to what I feel was a serious lack of compassion.

    Fast forward to early 2009 to the months leading up to my wedding, the painful intercourse was out of control and the frequency was worsening, but I was just trying to ignore it, figuring it was due to wedding stress. Thankfully, my now husband has always been a saint through all of this. When I moved after my wedding, my new simply PCP told me to use more lube. That didn't work. Over the past year, it got bad enough that we could no longer have sex.

    At this years annual exam, my PCP said I had what appeared to be vaginal atrophy, so that with the increased pelvic pain, painful sex, and frequency, led to a new obgyn referral. This one takes a special interest in IC patients and is very knowledgable. He diagnosed me with severe vulvar vestibulitis and was recommending a vestibulectomy. I was too tender for another round of PT for the PFD at this point. I had 4 weekly instills of heparin with no improvement so he referred me to his friend, who is a gyn that is a pelvic pain specialist. He said my pelvic pain and VV was so bad that he recommended a v. vestibulectomy, exp. laparascopy, and cysto with hydro., all of which I am now recovering from.

    My 2 IC-knowledgable gyns both did my surgery a couple weeks ago . They found and removed endo, dx pelvic congestion syndrome, and was able to completely confirm moderate IC (I was shocked when I saw the video and pictures). They took out a lot of vulvar tissue due to my inflammation running much deeper than expected.

    As I sit at home and recover (had a couple complications that will have me out of work till early Feb), it's blatantly clear that I will never be able to escape these health issues, even at my young age. I'm so grateful that I have found 2 compassionate doctors willing to get to the bottom of things and get me on a treatment plan. It's just nice to know that I'm not alone in this. I have been so comforted on my bad days and nights coming onto this site and seeing uplifting posts. I will no longer be a lurker, I'm stepping up and saying hello fellow IC'ers!! If you made it down this far and read all of this, I'm amazed. So sorry this was so lengthy. It has been a long road.

    Dx: IC, fibromyalgia, PFD, chronic pelvic pain, vulvodynia, endo, ovarian cysts, pelvic congestion syndrome, Vitamin B12 deficiency, hypothyroidism

  • #2
    Hello and welcome Sarah. It is nice to know you are not alone, isn't it? I find it amazing that the Dr's were so concerned with your painful sex problem. I can't get anyone to act as if they care at all that I can't have sex!! It sounds as if you are finally on the right track with your new Dr's. I wish you the best of luck in your healing and your future treatments.

    Again, glad to have you with us. However, not glad that you have so many problems at such a young age.

    Link to the patient information, everything from What is IC? to Disability

    American Urological Association Clinical Guideline
    Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom


    • #3

      It is so sad that it took so many doctors before you got some relief. I wish they would teach a long course on IC doctors and learn to have some compassion. So many people in general do not comprehend the pain and suffering we go through. At least this forum is understanding and informative.
      I do not understand that doctor telling you that you are to young to have IC. That just goe's to show you how ignorant these kind of doctors are. Ic can happen to anyone at any age or sex and race. I bet if they could walk in our shoes just one day with the severe pain they would be treating themselves with the strongest pain killer available. That is another things most doctors do not want to give you strong pain meds, you would think that when you are in your worst flare they would help you. I went through 3 months of excrutiating pain that I have never felt in my entire life, and believe me I have had alot of surgerys for various things and they gave me pain meds for those surgerys. I am now thankfull that my IC is under control for now and I pray that there will be a cure real soon for this depilating disease.
      <a href=";current=Picture005.jpg" target="_blank"><img src="" border="0" alt="Photobucket" ></a>


      • #4
        to the IC Network. I know you'll find a lot of compassion and support here.

        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


        • #5
          Welcome to the ICN Sarah! You've been through a lot. I'm glad you have a couple of doctors that you trust and can work with. That goes a long way when one has IC.

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


          • #6
            Hello Sarah,

            Wow, what a long road you have travelled.

            So happy to hear that you have docs who kinda "get it" and that they are treating you kindly. We can all only wish for that. It's just one of those weird diseases that not many know too much about. And you are never too young, there are small children with IC. All we can do is try to educate them and perhaps the next ICer will be treated better.

            Good luck to you, and congrats on finding such a great guy! Jill, wife of Bob


            • #7
              You have been through so much!! I hope your surgery helps with all the pain you've been suffering from. Please know we all care & are here for you!


              • #8
                Thanks everyone for the warm welcome!! I think I'm going to be very happy here. I'm hoping I can help others members as well as continue to get advice.

                Dx: IC, fibromyalgia, PFD, chronic pelvic pain, vulvodynia, endo, ovarian cysts, pelvic congestion syndrome, Vitamin B12 deficiency, hypothyroidism


                • #9
                  I just took the plunge too

                  I have been lurking on these pages for over 5 years and reading all these stories. I was diagnosed about 5 years ago and it has been a constant struggle for me too. I felt like no matter what I did or what doctor I saw I never got an answer. I feel your fustration and pain. It is good to hear you have a supportive husband it really makes a difference. I also have a very supportive husband and it really helps with the stress of constant pain and confusion. I hope you find the relief and support you need.
                  All the best to you


                  Alberta, Canada
                  Diagnosed in 2005
                  Servere Allergies


                  • #10
                    Sarah, Thank you for sharing your story. I read it before I was able to even post as I am also new to this board. I am glad you have found compassionate doctors. Some of the things I have read on this board are so horrific (experiences with doctors that in my opinion should not be!). I have a urologist but I am blessed to have a urogynecologist also who is one of the most compassionate doctors on the planet. It makes a difference. Even when you have a good dr, you can feel like you are losing it and you can think they think that about you because sometimes things are not that simple and easy to figure out. That's the weird thing about all of us IC patients - we're not really all alike. We have similar struggles but we all react differently to different things.