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!
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!
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…
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.
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!