Why stepping away from it all is sometimes the only way to heal from within

youComeFirstAs many people in the Interstitial Cystitis community know, I have been an active voice in the IC and Chronic Pelvic Pain awareness movement for almost 10 years. When I was first diagnosed in 2006, after years of unanswered questions, debilitating pain, and feeling completely isolated, I began a journey that would enable me to help thousands of chronic pelvic pain patients feel less alone, more educated, and stronger as they began the very difficult and lengthy healing process. For me, those years were the most gratifying, aggravating, heartbreaking, rewarding, and life changing times of my existence and the experience has forever shaped who I am as a chronic pain patient and as a woman today.

Throughout the years I  happily put everything I had into furthering our cause because it truly made me feel good to do so, but as I got closer and closer to  my 30th birthday I found myself becoming more unhappy with what I had and had not accomplished for myself on a personal level. While I always had the support of those in the CPP community, I kept feeling as though I had so many loose ends that hadn’t been connected in my own journey and in turn began to bitterize my feelings about the work I was doing along the lines of advocacy. It was getting harder and harder to manage my online support group of 1500+ chronic pelvic pain sufferers, not because of the demands of the job, but because I found myself dreading the redundant nature of a very common situation. Where I once enjoyed logging on and discussing new treatment options with newly diagnosed patients or sharing my story with the sole intention of giving others a form of hope, I became increasingly frustrated with the whole process.In truth, the feelings I was having shocked me to my core. After all, I had worked so hard to inspire and support so many others who were struggling with the same issues I was also dealing with on a daily basis. How dare I be frustrated? How dare I even consider neglecting the people who often looked to me for support, advice, and answers? How dare I turn my back on people who so often feel alone in their pain when I myself had once been in that same situation. I became overwhelmed with the guilt of the feelings I was having and decided that it was only a phase, something that I needed to just push through in order to continue fighting the good fight. So I pushed on without ever taking a second to really consider the root of the feelings I was having.

In the months that followed, I continued the mission. Which simply meant– Write blog, create awareness project, manage support group, answer emails. Week after week I played the same role on repeat, pushing harder than I had ever pushed before as a way to atone for the feelings I had felt months earlier when I wanted to leave it all and walk away. I found myself completely focused on IC and why it has the ability to destroy lives and love the way it does and became engulfed with everything that had to do with “sick”. I spent every night after work discussing sick things with sick people about unmanageable symptoms and unhealthy relationships while feeling sick myself. Essentially, I was treating sick animals all day long only to come home and continue to surround myself with more sickly subject matter. My entire day was consumed in talk about unhealthy things and not only were words portraying unhealthiness coming out of my mouth but the symptoms of unhealthy were also being demonstrated by my own being. As the cycle continued, I began to focus solely on how terrible I felt and how in feeling so terrible, parts of my life had been taken away that I missed terribly. It was an easy cycle to fall into and Proved to be an even harder one to break. As the cycle continued to take its toll, it changed the way I experienced certain aspects of my life and changed the way in which I reached out to others. I quickly started to become something I had worked so hard to never be. Cold, bitter, victimized, and for lack of a better truthful word, pathetic. I was unhappy, unwell, and unmotivated and I knew t that moment something had to change.

I began to evaluate my daily routines and started to make notes of what specifically made me unhappy about each event I was involved in. I learned that I was feeling as though I had been plateaued since being diagnosed in 2006 and while I excelled at helping others, I had stopped doing things to help myself unless they were IC related. I had the realization that in trying to do everything in my power to manage my symptoms so that IC no longer controlled my life, IC ultimately was the only thing that had full control of every aspect of my life. I had inadvertently made it so that IC was the only thing that defined me. I had inadvertently made it so that my much needed hobby consisted only of activities that forced me to feel an obligation to others because in the beginning of my struggle before being diagnosed, there weren’t many people who had felt an obligation to help me.I had inadvertently made it that all of the other hobbies that I used to enjoy were pushed into a pile in the corner that had been forgotten and ignored. Ultimately, I had the realization that I didn’t want to walk away because I didn’t believe in the cause anymore or because I didn’t want to help people. I didn’t want to walk away because the people looking for answers and advice didn’t deserve it or weren’t worthy. I didn’t want to walk away because it was clear that making those outside of the chronic pain community willingly educate themselves on these conditions would be a life long battle and one that would not ever be easily won. I was walking away because I dedicated much of my spare time after I got diagnosed and learned to manage my conditions helping others and in turn forgot to continue to help myself. This revelation didn’t mean that I needed to feel guilty about these feelings as I once had but instead meant that I needed to change my focus for a bit with the hope that in focusing on things other than all things sick, I may be able to heal parts of me that were still able to be healed by my own self.

I found this eye-opening because when IC became a major player in my life story, it helped take away dreams of mine that nothing had ever been successful at taking away before. It destroyed friendships and career opportunities and became a whirlwind of chaos for the paths I had always wished to take. I harbored the disappointment and heartbreak about the so called “loss of dreams” deep down for years while constantly telling myself that those dreams were a thing of the past–that those dreams changed because I had a drastic life alteration when I was diagnosed with some very unruly and unpredictable incurable conditions. It wasn’t until I had these revelations that I remembered how important it is for the healing process to continue to do things you love. Even if you can’t do them the same way you used to or even if you’re unable to make them your main priority, it is imperative to incorporate positive things in your life. Even if life seems to hand you nothing but negative pissed off lemons, you must remember the things you love.   I believe with every fiber of my being that if you continuously focus on the bad and the pain while surrounding yourself with the unhealthy, you begin to decrease your mind and hearts ability to heal itself. It is proven that unhappy people have  a harder time healing…both from wounds and injuries to viruses, colds, depression, etc. When the mind is unhappy, the body is unhappy and when the body is unhappy all of the body systems are unable to support a healing environment thus driving a chronic pain patient deeper into the abyss of the pain cycle.

My moral is simple. It is up to us to educate ourselves on our conditions and to learn ways to best manage our pain, symptoms, and struggles in the ways that benefit us the most. It is also up to us to realize that when you surround yourself with the negativity that comes so easily with chronic pain conditions, it is easy to forget that through it all there are still things we are great at; There are still things we need to do to feel complete within ourselves. Ultimately, our lives are still our own to live as we wish.  Maybe these conditions make us alter the way we go about doing the things we love but we should NEVER, allow these conditions to convince us that pain is all we are. We should never allow our pain to take everything else we love away from us. Even if you can only jog 5 steps a day or can only make it through the first 20 min. of a movie in a theater before having to use the bathroom, it means we are still in control of something. If you love the movies. Go. Sit in an end seat and instead of being embarrassed to have to keep getting up to try to pee, be proud of yourself that you didn’t let it win. Sure, it’ll alter how we achieve our dreams from here on out, but who cares? I mean, really…who cares? Our lives are not for anyone else to live. They are our own and they can be nothing more than what we make of them.

Stepping away from the advocacy work for the last year has been a blessing for me. Am I in the best of health? No. Why? Because I over did it. Did I accomplish everything I used to dream about? Not yet. But have I started to remember why these were my dreams in the first place? Without a doubt.  Was it worth it? I give you a resounding hell yes! The truth is, I don’t care if I’m in a bit more pain than I was yesterday because for the first time in 10 years I was able to record a song in my studio. I don’t care if my usually managed flare is a bit more obnoxious and horrid today because yesterday I made and ate the best damn hot wings of my life. I enjoyed it. The pain will come and go–  It’ll wax and wane caused by something we knowingly did and sometimes it’ll wan and wane because this pain of ours simply can’t be trusted. My point is, many of us have learned how to live with it thus far but living with it shouldn’t mean surrendering our joy in the little things that we love.

For any unanswered questions, I’d like to make it clear that I’m not walking away from advocating for our awareness. I just needed some time to remember who I was before the pain and who I still am with the pain. I will continue to fight for us, speak to whoever will listen, and do my best to make others know they are supported but this time around, I come first. It took turning 30 to realize that putting me first isn’t selfish. It’s not wrong and it’s not cruel. If anything, it is enabling me to be able to do the things that I love to do longer and what better reason is there than that?

The best memes of 2014

This year for IC awareness month, I decided to implement a project/contest that would harness the every growing popularity of the “self made” meme. In the beginning, there was some confusion about how to go about making IC based memes for those not so social media/internet savvy folks but after some careful explaining and posting lots of Chuck Norris inspired memes for demonstration purposes, people were able to grasp the concept and run with it.   Here are the #ICawarenessmeme2014 submissions which I encourage you to share and re-post as many times as you see fit. All I ask is that you please continue to use the hashtag #ICawarenessmeme2014 so that we have a means of tracking its movement across the social media platforms.

jill meme but-you-dont-look-sick-he-said-thats-funny-i-replied-you-didnt-look-as-though-youd-be-this-much-of-a-moron-eitherdeception-i-say--15843 drink-more-cranberry-juice-said-no-one-who-actually-understands-the-mechanisms-of-interstitial-cystitis-ever--154c9 but-i-am-the-doctor-he-said-you-are-just-a-woman-and-clearly-know-nothing-of-your-own-body-this-pain-is-simply-in-your-head--305e5 -im-sorry-did-you-just-tell-me-that-theres-no-way-sex-could-possibly-be-painful-bend-over-hunny-well-start-with-a-brillo-pad-some-lemon-juice--b4255 i know you don't know meme christy again im-sorry-did-you-just-say-that-i-dont-look-sick-how-observant-now-come-here-so-i-can-demonstrate-the-anger-invisible-illness-can-create--92efb i-must-sit-this-way-until-this-incessant-burning-decides-to-cease-it-could-take-days-even-possibly-months-you-there-fetch-this-woman-an-ice-pack-9e949 jill meme1 Christy dr seuss christy larimer 3 bless your heart christy larimer 2 christy larimer keys christy meme jessica moran laura gambel 1 marion 2 marion 8 marion 9 marion h 1 marion h 3 marion h 4 marion h 5 marion h 6 marion h 7 marion more marion must-i-really-explain-againdear-when-im-flaring-your-penis-simply-feels-like-a-burning-rod-of-torturedo-try-to-not-take-it-personal-1f252 no-sir-you-cannot-yet-use-the-bathroom-i-must-go-at-least-15-more-times-before-i-can-attempt-to-move-on-with-my-day--8d5bf so-youre-telling-me-that-the-pain-i-feel-is-in-my-head-because-you-arent-able-to-realize-that-not-all-patients-are-the-same--d8825 the-bladder-is-like-a-3yr-old-it-throws-random-temper-tantrums-makes-a-mess-of-things-hates-authority-its-an-asshat-that-needs-discipline-and-loads-of-therapy-acdc1 yes-we-can-finally-leave-for-our-trip-my-special-seeing-eyes-have-scouted-every-public-bathroom-from-here-to-the-milky-wayone-must-be-prepared-3d6a2

I want to take a moment to thank everyone who took the time to make the memes and also those who continued to share throughout the month of September. By going about IC awareness in a somewhat comedic light, we were able to spread the word just a bit further than we were last year. My hope is to continue to expand our outreach as the years go on!

Tali Keteri’s 2014 Interstitial Cystitis Awareness Month Social Media Meme Contest

   Tali Keteri’s Social Media Meme Contest

-Supported by the IC-Network and the official IC Awareness Month campaign


The above meme was created by yours truly!

      Last year I had the privilege of running and contributing to the writing, poetry, and blogging portion of IC awareness month for the IC- Network. This year, I decided that since the majority of time in September of 2013 was spent helping fellow ICers become more comfortable when writing or talking about the intricacies and personal sensitive nature of this condition, we should use our new found confidence to tell our stories to those who have no idea what IC is or what it entails. We need to spend our time creating awareness tactics that interest those people who would normally have no interest at all in something that doesn’t directly affect them. What better way to do so than to use a form of media that most can understand? I have spent a ton of time researching and monitoring what forms of social media go viral the most and have spent even more time developing different concepts for ICers to use during our awareness month to help get the word out. It is undeniable that memes have become commonplace in our social media outlets and that because they are easily shared, it is extremely beneficial to those in our position to use our own personal messages to create IC related memes that may prompt the outside world to put their best ear forward. (That sounded weird right? “Best ear forward”? I mean, I guess I feel that ears are like boobs. One boob is always bigger than the other (don’t be offended, it’s just nature)and I feel that one ear usually hears better than the other, if only in our mind… What? Our bodies are complex vessels. And clearly, I think too much… Anywho, I am excited to put this meme challenge on the table for those who want to use their wit, humor, bitterness, anger, and annoyance with this condition to have a little fun while trying to get the “outsiders” involved. I can’t wait to see what we all come up with.

Now on another note, I would love to make a contest out of this and offer up some prizes to the best IC awareness memes of 2014. I’m still working out the logistics of this but I would love to crown the memes that are the most :

publicly influential, witty, positive, bold & personal!!!

So, get creative.

Get ridiculous.

Make a statement.

Don’t be afraid to use shock value.

     But, just remember, the point is to be able to make these go viral. We want people to be able to share them over and over, either because they can relate or because they think our struggle is funny…or maybe because they don’t believe us…or maybe because they do and they had no idea that something like this existed but the funny cartoon in the meme made them need to read it and in turn prompted them to need to Google IC and its symptoms. It’s all about the buzz that we have the power to create. So remember, regardless of why or how they choose to share it, a share is a share is a share, and not everyone is going to understand this condition right off the bat. It will take time. But in order to explain how IC works, we need an audience willing to listen. We need to focus on one thing at a time.

Let’s create an IC interest..

We can teach them about it as we go.

Make it catchy

Make it real

Make it raw

Make it YOU

     IC may have changed a lot of things about all of us, but we are still who we were before the pain started. It’s up to us to keep that part afloat.

Meme-esque frequently asked questions and concerns

What exactly is a meme?

A meme is:


  1. A cultural item that is transmitted by repetition and replication in a matter analogous to the biological transmission of genes
  2. A cultural item in the form of an image, video, phrase, etc, that is spread via the internet and often altered in a creative or humorous way.

Great, but what IS it?

     Here are some examples of popular memes you may have seen floating around the vast

webo-wildwest-ophere…I mean internet. (Don’t judge me. I have a bad habit of renaming things..mainly for my own amusement)

chuck norris



Ok, but how can we make this “meme” situation a useful resource of Interstitial Cystitis Awareness Month?

     Well, we can do this by simply tailoring the “tag lines” on these images, videos, gif’s. Etc., to fit our needs. As I have stated numerous times before, this age of social media requires us to think about awareness a bit differently in the sense that we have to change our approach to appeal to the masses. That being said, people love to share things on social media that make them laugh or even things that make them feel somewhat awkward. We have such a great opportunity to make them awkwardly laugh or even shock them so badly that they have to share with others because they can’t believe what they’re reading. I’m not trying to desensitize our issues, I’m simply saying that we need to use social media to our advantage and in order to do that we need to grab the attention of people who know nothing about our struggles. The best way to do that is to put it all out there. If they laugh at it, who cares? At least they read it and maybe shared it. That’s a few more people Googling IC or IC awareness month than there were 4 minutes ago. That is the goal. This is not the time for sensitivity!

Say we do want to take part in this challenge, how do we even start?

      Because memes have become such a staple in the internet world it is very easy to design your own. But, if you’re new to the whole concept of making “the meme” here is the best website ( in my opinion) where you can try your hand and make some really effective sharable memes.

  • www.someecards.com – I think this is where the majority of people make their memes. They have a great variety of old school, cartoony, and vintage images to choose from. All you need to do is pick a picture that suits you and add the words..oh, and share with everyone. All the time.
  • There’s also Rotten E cards if you’d like to try another site
  • Here’s an IC meme I found while searching on the site- I’m unsure of who made it originally but thanks a ton for such a great way to use humor and wit to expose the outside world to our pain.    i know you don't know meme

What the hell do we put on these things?

     Our stories.

     Our feelings.

     In as few effective words as possible.

     Example: you’re having a bad day because you dropped your coffee?I got up 26 times in the past 4 hours      to try to pee and still look 6 months pregnant from the bloat

     Your night was bad last night? Did you have to get up 26 times to try to pee? I thought not.

Do we have to put our names on them?

     No, of course not. Every year I only ask people to divulge as much as they feel comfortable. If you want it      to be anonymous but still want to be in the running for the contest you can email me directly at           livingwithic@hotmail.com so that we will be able to keep your post anonymous but keep you updated and      involved in the running for the winning memes.

How many IC related memes can we submit?

     As many as you’d like. The more options we have, the more shares we get, and the more shares we get,      the more awareness occurs. Feel free to expand and post as many as you’d like. Also, feel free to post          where ever you’d like.

Such as?

     Your own personal Facebook, IC related facebook groups, Twitter, pinterest, IC-network , IC Ramblings,        news stations, etc. If you think you can post somewhere where people will willingly pick it up, post it. And      then post it again. This is the month we’re allowed to be annoying and obnoxious. It’s all about us. I mean      really? What’s the worst that can happen? They’ll say they’re not interested? That’s a better chance then      taking none at all. Keep talking.

Fashionably Late: I needed 14 bathroom breaks. Here’s to September. IC Awareness Month. 15 days late.

7117816429_3200e417f3Ok. I know that I ranted a shit-ton about all of the projects I had planned for this years IC Awareness Month and never posted much of anything about anything. This is truly bothersome as I never, ever, EVER slack in September…especially when it comes to this even  But unfortunately, this year had some medical surprises in mind for me ( Not IC related- not even a little, believe it or not) that I couldn’t have predicted which knocked me off of my game completely. I have been less than useless for the past month and a half which has inevitably screwed up my time management. It  has been quite unfortunate. I feel as thought I’ve let many of you down and for that I apologize. For those who are wondering what is going on with me I promise I will touch base on all of the details later on in the month but I want to take the time to focus  (while I’m physically able) on the importance of spreading the word about IC and the hardships this condition causes during this very important month that is directly dedicated to all of us who suffer with these particular pelvic and bladder issues.

That being said, the next few days I will try to make up for my severe ball dropping as far as IC Awareness month goes and I ask that you all try to be as understanding as you can.

After all, we’ve all been there right? Sometimes you just don’t feel well enough to get out of bed, let alone write, think, be creative, or act human. Be nice. I’m sure you’d want the same for you if the situations were reversed.

The next few posts will consist of the projects I had wanted to implement for September 1st and ultimately the projects that I was unable to get off the ground due to feeling so terrible. Yes they’re late. Yes it’s already September 15th. Yes they’re STILL important. Take part if you will, stand back if you won’t. But don’t hate on those who play or use their inner emotions to express all the words they feel they need to say.

This is our month.

Let’s make it count.

Check back for new posts and challenges daily from here on out!

If you want to get involved in other ways please don’t hesitate for one minuscule second to visit the official site of  IC awareness month and also the organization which I have able to contribute to for the past 5+ years with heartfelt support and understanding.

Even though we struggle. The IC community is strong. And that is truly something to hold dear.


No friends are better than fake friends.


Someone asked me the other day if I missed the friends I lost during my journey with IC and other Chronic Pelvic Pain conditions. Almost immediately, the asshole in me laughed out loud  and in the most sarcastic tone I could muster asked “why… should I?”

I guess it’s a legitimate question for those who don’t know me well enough to not waste the time asking a question like that in the first place or for those who really do believe in that whole “once a friend always a friend” thing. What it comes down to for me is simply this… and I am so bold as to say that most people would do much better if they followed the same path…. If you have to let someone go because they cannot, will not, or dare not make an honest attempt to understand, support, and gain knowledge about the conditions you suffer from, they were not deserving of your love and loyalty to begin with. It’s not mean or overly harsh it’s just what it is and something I came to terms with a long long time ago.

I feel that if more people were more confident in the details of their struggle they would find others who respect the shit out of that same struggle and who truly deserve to be in their lives. I find that the lack of confidence in the struggle gives those “friends” who have been grandfathered in 2nd, 3rd, and 7th chances based upon history and not upon any amount of growth or respect. I have lost people because of these conditions and I thank God and the bladder devil every day for that fact. 

I look at it like this…if it wasn’t for my struggle with these incurable, insufferable plagues, I would be stuck with those incurable insufferably awful humans that once tried to convince me they were, in fact, my people. I’d much rather be proud of my pain and have real people in my corner than hide it and rock out with all of those bi-peds who want nothing more than to hide from the shite we all have to deal with and be ashamed of us while we try to deal with it. 

Tis’ all. Ramblings concluded.

What? Did that sound bitter and mean? Stop being so sensitive.

Someone has to say this shit….



The Taliverse™

Why yes, We’ll accept!


 You’ve been asked to give an acceptance speech. What are you accepting? A team of doctors and medical professionals whoa re going to get your health back on track. Tell them how much it means to you to have them working towards a better healthier you.


Below are the answers  I’ve received for IC Awareness Month daily topic # 18.

–To my old urologist thank you for finally referring me to an ic specialist. To the ic specialist thank you for listening and being one of the few uros that truly are up to date and knowledgable about ic. Thank you for not being condescending as I tell you of my ideas for treatment. Thank you for seeing how much pain I’m in. Thank you to my previous urologists’ pa who was more educated and up to date with ic than he was. Last but not least thank you to Jill and the ic-network and everyone who is apart of it. Without the IC network and its educational resources and support forum, I would be in a very dark place of no hope. Love, Kim

— I would say thank you for listening to me and not making me feel like this medical condition does not exist. To find a cure would be the ultimate miracle but until that happens things that do help are so costly so doctors try to advocate for more help with alternative methods that are beyond patients pockets. For example, I cannot afford pelvic floor therapy or homeopathic methods. Doctors please advocate so these things are part of protocol when someone suffers so badly from ic. It only makes the stress come on more when there is no help available due to the cost. Doctors please know that this condition is devastating the longer someone has to deal with it.

— I would say thank you for all of the hard work and effort to get me and all IC affected people into a better, physical shape. The doctors did not give us this issue. It’s their compassion and determination to relieve the suffering of others that gives us all hope.

 –My dream is to have pharma doing more research studies on this disease and looking for new treatments. If they were doing this I would hug them. As far as my current doctor…. He deserves a hug too. For believing in me and trying to have me lead the best life possible.

–I have and will continue to thank my doctor for the listening year as I was dealing with the emotions and fears after reading the Internet. I was thankful that she made the steps for me to do the treatment myself. She answered all and every question I had. Some days she just allowed me to cry. I am thankful for the team I have.

— This would the most succinct speech ever. ME: “I will not thank you, for this is no more than I and ALL ic sufferers deserve. It’s about damn time. Now let’s get busy!

— Just a simple Thank You for believing in me. Giving my daughters back their Mother and me my Life.

— I would not take up your time if it was just for me but the people who live with me deserve better. My husbands day starts at 5am and that is a good day for him. That is a day where he actually got some sleep and didn’t get awakened by me needing something in the middle of the night. You see this man goes to work and comes home from a grueling 10 to 12 hours of working and running the I T department of a VA hospital. And when he gets home he takes care of me. By the time he is able to sit down it is well into 10pm. I want more for him. He spent the last 30 years in the army, did a 16 month deployment overseas and deserves some down time. But because of my health issues he has not been able to breathe. The other reason I would like to be considered for a new or used bladder is so my grandchildren could know the real me. You see, I have 7 beautiful grandchildren and most of them have only known me as sick. This isn’t the legacy I want to leave them with. I try very hard to create memories that do not evolve around my IC but it is very hard. Please help me to give my grandchildren more to remember me by than as their always sick grandmother. I ask for a better bladder, it doesn’t have to be new just better than what I have. 

I am not trying to build a country or fight some awful atrocity against mankind I am fighting for a family that deserves a better wife, mother, grandmother, sister and daughter. 
Thank you for your consideration.

These responses were submitted by numerous IC’ers and compiled into a post for your IC Awareness Pleasure!


Why Nurse Ratchettpants and Doctor Douche-Canoe should be fed to the wolves.


Most of the topics I have chosen have been to help us remind ourselves of the positive and not get completely lost in the pain. For this particular topic I want it to be as open and honest as possible. Say exactly how you feel and say it all.

Write an open letter to the doctor or medical professional that told you IC wasn’t real or that you should just live with it. Let him/her know what that caused emotionally for you. Talk about the effects something like that has on a chronic pain patient.

My only suggestion is to please leave names out of it or use something like Dear Doctor “doesn’t have a clue” or “Nurse Ratchet” as this is more for a healing purpose as it is for name calling. –

Why Hellooooooooooooooo Nurse Ratchet.  What? I couldn’t resist…


Below are the answers  I’ve received for IC Awareness Month daily topic # 16.


I listened to the new procedure I was about to engage in. Physical therapy for IC. This therapy was going to be different than anything I had ever done. I just didn’t know how different! The therapist went through the steps of my vitals, my history, having me bend down to touch my feet and checking my posture, this all being done while my husband was in the room. But then she asked him to leave so that she could complete the exam. I thought we were already pretty well done? What else was there to do. Up to this point I was feeling okay. Little did I know what the next part of the exam was going to behold. The therapist gave me a gown and stepped out, she asked me to remove my underwear. As I write this part of my experience I am crying. The therapist came into the room and asked me to lay on the table and rest one of my legs on her knee. She was sitting on the table with me. She asked me to to relax the other leg so that I was wide open for all to see. Not that there was anyone there but every picture and certificate on the wall, the chair, the stool, you name it was watching as she began to internally massage the inner walls of my vagina. I was so mortified. 

40 years earlier

I was 15, he was 17. He told me everything would be fine. I didn’t know what he was doing to me, he hurt me. He pushed my face down into his crouch and force me to suck on him. I just wanted to go home…I wanted my mom but I knew that this had changed everything. I went home and I took the longest bath, I couldn’t get clean enough. 

6 weeks later he showed me a book about babies and I found out I was pregnant. The nurse at my school helped me with a pregnancy test. I was just 15, I was afraid. My mother said I was trash and that I did this to her, I thought I did it to myself. 

Roe versus Wade had just been finalized. My mother & my father took me to this dingy brick building in Chicago early in the morning to be examined by a doctor. I was only 15 and very naive. I had never seen this type of doctor before, when I looked back mother was sitting there why wasn’t she coming with me, why was she letting me go with this strange man wearing a white coat? I was so scared!!!

When I went into the examining room the man told me to take all of my clothes off and lay on the table. He touched me, he put his fingers inside of me and ask me if it felt good. I was completely naked and couldn’t find anything to cover my self. He kept yelling at me to move my hands so he could see my body. He made me cry. He wanted to know if he made me feel as good as the boy did. He asked me if what he was doing felt as good as when I was F……g. I cried and told him I wanted to go home, I wanted my mother & daddy. Finally he told me to get dressed. He took me to the waiting room where my parents were. No one love me that day, everyone was mad at me. I didn’t even know what I had done. 

We left that building and went to an even dirtier building, the room was full of people, adults…a lot of woman. A card board number was hung on my neck with a piece of yarn and I was given this tiny little white pill that made my head kind of fuzzy. I waited for 6 or 7 hours before my number was called and by then the fuzziness was gone. The nurse told me to take off my pants and underwear. I looked across the room and saw what looked like a shop vac. There was blood all in the clear tubing. The nurse told me to hold her hand, she said this is going to hurt…that same man wearing the white coat walked in, I turned my head and looked at the blue wall and cried…

40 years later

I left that therapists office in tears, I was hysterical. I thought all of the past was behind me but it wasn’t! It was there all the time under the pages of my life!


Dear Doctors, 
After numerous attempts at finding out what was wrong with my body. After three unnecessary surgeries, a exploratory laparoscopy, a partial hysterectomy, and a sling mesh. 
Radical amounts of visits to your office, medications and antibiotics. You finally decided to test me for IC. If only you were more knowledgable in the common, but very hidden disorder called IC, I would have suffered less. 

Now I am another one of your IC patients and you ARE in deed doing all your best to work with me on this one. I appreciate you’re doing your part. Although I suffered for two years prior to my diagnosis. I allowed that to be a thing of the past. I have accepted the fate that life has dealt me. But I would like for you to try harder. Just a little more. I suggest you test women for IC first before cutting into their bodies. The sooner you start in the plan of treatments the better. Although I have four wonderful children raging from the ages of 19 to 11. It was very spiritually painful to lose a part of my body that meant so much to me. Why can’t you be an advocate for me and the millions of IC patients and help us fight and try harder for fundings for this debilitating beast. More research and time into this disorder can prevent years if suffering and possibly even a cure someday. 

Spiritually I am grounded on The Most High God. But physically I come to you with trust that not only are you doing your job, but that you care. And that you will try and use your power of being a physician to the advantage of finding out more about iC. 

I see numerous specialists. Pain management. Psychiatrist. Urologist. But none compare to my time spend alone with God. And through my prayers I ask that he would work through these Physicians and scientists and find better treatment plans and finally a cure! 
Sincerely, ME.


Dear Doctor,

I was incredulous when you told me my ic was psychosomatic, caused by one or more of 7 emotional traumas, which I have none of. Did I imagine blood and leukocyte esterase in my urine? Did I imagine pettechial hemorrhaging in my bladder wall? No I did not. But I sat there and meekly let u call me crazy. I left your office in tears and now I cannot trust u with my health and wellbeing. The feeling of futility and abandonment just adds to the pain and fear. I wouldn’t want to curse anyone with this problem, but I wish u could live just ONE WEEK like I live every day. It might open your mind to the possibility that you r wrong. Sincerely Amy


Dear DR. Didn’t want to deal with IC patients so you just told me my bladder was just angry.

You should have your medical license revoked for wasting 8 months of my life when I could have been getting treatment.


To All The Countless Dr,

I had to see more Doctors than I can count age 16 thru 23 to try and find out what was wrong with me. To the Dr that said there was nothing wrong and he would shoot himself with a shot gun if I came back. I’ll supply the gun. To the drs that said I was to young to have anything wrong. I only wish that was true. To the drs that said life could be worse, it’s just your bladder. Life could be worse but most days if it was worse I couldn’t take it. Life is a struggle every day. To the big shot dr that didn’t listen and ran all the tests to see why I got bladder infections. Thanks, I only had one infection before I saw you. And after seeing you I had the worse bladder infection, peed blood for days and this caused my pain to be 24/7 instead of only on bad days. To the Dr that I pleaded for a cystoscopy, to see if I had IC. And she said I was too young and didn’t want to have that. I left in tears because I just wanted answers. I finally found a Dr 7 years later that did a cystoscopy and of course I had a severe case IC with ulcers. Thank you to that DR for finally believing me and listening!! And thank you to my pain dr for understanding how debilitating and painful IC is! I hope and pray that all the Drs that didn’t believe me, have had some continuing education and understand about IC.


Dear Dr. Extremely blunt,

I just want to say I’m sorry I haven’t been easier to work with and that I’ve been very rude at times. I came to you with a chip on my shoulder from years of terrible experiences. I’ve come to appreciate the way our personalities clash and grate. I think it gives us a very honest relationship. I dropped a very complicated medical history in your lap with no insurance. What did expect you to do? Thank you so much for trying. I know it’s hard for you to admit that you have no answers and its hard for me to pay your bills! Thank you for diagnosing me.  I have no more time to write. I have an appointment with Dr soawfulhe’sbeenunderhospitaldisiplineforthewayhetreatspatientsandnurses to get a stent removed. I can’t believe I left you for him. The kidney stone summer for hell is almost over and I’m coming back to you. If you’ll have me…


Dear Pumpkin…

 In my early 20’s my GP sent me to the “best” urologist in our area. After several tests, he answer to me was “well pumpkin, if you can’t control your bladder at this age, what are you going to do when you are an old lady?”…..Gave me a script for Tofranil (back in the 80’s) & sent me on my way.


Dear doctor old fashioned,

it saddens me that you were so close minded to the new research and treatments for ic. Every time I came to you with my ideas you shot them down with condescending remarks. You had no idea how badly I wanted a new urologist but your group was the only one in town. I was told by your secretary that if I requested a referral to another urologist in your group that it would take months and you may end up denying my request. I was too afraid of the pain I was in too risk it. I knew now from the research that I did NOT want to try DMSO treatments you thought I was ridiculous. I saw your pa in the midst of a flare and she prescribed hydroxyzine and I finally got some sleep. The elmiron did not work and I was forced to see you again. You finally out right admitted to me that this was all too much for you. You were “just a plumber” you said. I asked for a refill for my hydroxyzine, you said to go to my regular doctor for sleep medications. You finally referred me to a knowledgable doctor 2 hours away. Very sad that I had to drive from one big city to another just to find a urologist that is educated in ic. I hope I never have too see you and that you receive the ic pamphlet of information I plan to give to your secretary. Sincerely, your long gone patient.


To my old urologist.

I know that you really believed that IC was a rare disease. As you know know it isn’t. I realized that you started to believe when you called me to get Dr. Moldwin’s name and address so you could refer one of your patients.


 Dear Doctor,

we certainly got off to a rocky start. My gynecologist thought my symptoms fit IC (bless her) and referred me to you. I mad the appointment with another doctor in your group so was a little upset that I had to see you. You listened to my complaint and ordered tests to rule out other causes. When you agreed that it was IC. Your next words were like a slap in the face. No one likes to work with IC pts. So they always put them on me! I was hurt and angry…I have an HMO and knew you were my only choice and I had hoped that we would become partners in this journey.
When I told you that I often would bleed when I was in great pain and asked if I could have hunner ulcers. You said that is so rare. I do have Hunners as the test showed. You don’t believe in giving pain medicines, after two years of crying in your office you ordered Tramadol. We are slowly creating a treatment plan that I hope will result in living the life that I want. But please hurry, some days I am only hanging on my a thread!


These responses were submitted by numerous IC’ers and compiled into a post for your IC Awareness Pleasure!