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!


Introduce yourself to your pain & remind it that you’re still mostly in charge. Most of the time.

ImageI spent the first days of my newly married life completely stressed the shit out about where we were going to live, what we were going to do for money until Derek’s GI bill kicked in and I started my job, and when I could start acting like a normal “no longer planning a wedding” human being again. It was the happiest first few days of my married life and the most stressful days since the morning of the wedding. Add that with a combination of no sleep and it creates a recipe for pelvic disaster.

 Sidenote: prepping for a wedding for 1+ yrs to have it over in 1 day leaves you completely lost and baffled at the end of it all. Trying to rewind back to what you were before the planning started is like trying to put out a fire with a teaspoon and a shot glass full of water. In other words…that shit does not go according to plan.

During our move to Boston, D and I loaded and unloaded our entire 16 foot moving truck ourselves and also did all of the cleaning, unpacking, and reassembling of furniture in the new place. Needless to say, none of those things equate to a healthy pelvic region and I was immediately thrown into a high tone pelvic/bladder flare that had no interest in playing along nicely. While I am usually quite good at using a plethora of assorted techniques to take my flares down a few notches there was an overwhelming lack of calm which is notorious for making matters much worse than ever intended. As often as I remind myself how important it is to breathe deeply during a flare to help keep the pelvic muscles relaxed I found myself in an impossible situation which many of us fall into on a daily basis. I had developed this horrid flare a measly 8 hours before I was scheduled for a crazy important all hands on deck job interview and that thought alone created more and more tension and more and more panic. The more I panicked the worse my flare got and the worse my flare got the more I panicked. It’s insane how common this is for so many ICers and CPP patients.


 There are boatloads of us who get caught up in this trap so deeply and forget how important it is to keep ourselves calm. Without relaxation techniques, our body is incapable of dealing with the pain in a positive way (yes, there is such a thing as positive pain management). The more you freak out over the pain the more prominent the pain becomes and that alone is one of the most difficult things to manage. After all, life still goes on… you have super important things to take care of; pick up the kids from school, make dinner, take public transportation to a new doctor appointment, job interview, etc. and you’re terrified that the pain won’t allow you to do those things. It’s a double edged sword whose edges will never dull.  The main thing that can change about the situation in its entirety is how in tune you are with your emotions and your muscles.

 Take notice the next time you’re flaring and  panicking over the pain. Feel how it changes. Feel how it is affected by the lack of breathing and the tension. Take into account that posture is everything! Find a comfortable area and turn on the heating pad. Lay on your back and focus on deep breathing. Sing your favorite song in your head or think about a good day you had with your family. Do your best to not focus on the pain and by all means don’t stop breathing. Don’t think about how dinner has to be ready in 45 minutes or that tomorrow morning you have to take the kids to school. Take time for yourself. Take time in your own head. Breathe deep and think about anything but how shitty you feel. In my own experience, if you can keep that up for a small amount of time, the pain changes. I’m not saying it goes away completely but it changes. I always notice that when the discomfort starts to subside the category of pain morphs into something different. It can go from full body to localized or localized to pin point and at that moment my brain and nerve endings are thrilled to have some form of relief. 


This flare was a real challenge for me and it took a few hours to get some sort of grasp on the entire situation but I was able to make my interview the next morning and not be a 10 on the pain scale. I’m still reeling a bit from all of the stress and excitement of the past few weeks but have put myself in check as far as taking relaxation time for me….and that makes the Taliverse a much happier place. 

Interstitial Cystitis Awareness Month


IC awareness month is fast approaching….what are you going to do to get involved and spread the word?   Please take a moment to check out all of the different committees that are being run this year by myself and an assortment of other IC combatants. We need help with writing, social media efforts, proclamations, poster competitions, blogging, poetry, political lobbying, and media relations. Reach out if you’re interested in getting involved.

If you’re one for writing/poetry/blogging  you can contact yours truly!

I will be posting more about my plans for the writing/poetry/blogging portion of this years IC awareness month in the next few days.

R.I.P work ethic….our generation no longer cares that you’ve died nor do they want to revive you.

I know I speak of no secret when I say that the health care system fails many patients looking to it for assistance  on a daily basis. It can be as something as little as a busted lip, broken foot, or a terrible cough, or it can be something as serious as chest pains, chronic pain conditions, or cancer. I have found in my 20+ years of spending time in numerous health care venues that it typically doesn’t matter what ailment you are there for because the amount of care you get is based completely on who you are, who you know, which doctor actually bothered to learn about total body care even if they were  “just going to be a podiatrist”, and how good you are at playing the “I deserve to be your patient and be treated as one” game which I’m pretty sure that all CPP patients know that if you can’t play that game you will not be seen or taken seriously. It’s horrible. Why should we have know the right script and red flag symptom list  in order to talk to a doctor and get some tests run? If we went in and said “oh, my stomach hurts really really bad in the lower right quadrant but I do have IC” they’re either going to chalk it up to an IC flare or tell us we’re there for meds as opposed to looking to make sure our appendix isn’t going to explode or that our ovary isn’t trying to crawl out of our belly button. It’s freakin’ ridiculous. So instead you learn the game…and you make sure you play it well…otherwise you get looked at like a pill head or someone who can’t manage their IC flares…and that’s if they even can admit that IC exists.

***side note also known as Taliverse ADD

I have worked in animal care for years. I have yet to run into a seasoned Veterinarian, fresh outta school intern or board certified VT that has to ask me what IC is when I tell them I have it. They know what it is..the mechanisms behind it.. and sometimes even try to offer information, literature, and studies on certain veterinary meds that work on the IC cats to see if it’s something that may work for us.


Your typical human urologist does not. That is something that we have to change and soon….

***end sidenote/ADD moment


 In my 10 years in NYC,  I have seen numerous patients bleeding profusely while sitting in the ER waiting to be seen which not only is a hazard to their own well being but to the safety of others…many others sitting in the ER for a stubbed toe or antibiotics for their cold, (which is why we have so many infections  that are becoming antibiotic resistant) wasting total resources for the people that really truly need to be there and others such as chronic pelvic pain patients that need to know asap if the excruciating pain their bladder is in is nothing more than a flare up or a kickin UTI that needs to be rectified immediately. I’m not saying that if you are injured that you shouldn’t go get medical help but for gods sake can you please know the difference between an emergency and an urgent care facility situation? It angers me….more than words can ever explain.  Now of course there are different situations here to consider….some small town people may not have a 24 hour urgent care facility and in that case you shall be exempt about the groups of people I am bitching about…but for those who do have access and choose to sit for 4 hours in the ER for a toe nail that your drunk ass ripped off on the sidewalk last night go sit your ridiculous self in urgent care and leave the ER for those who need it, like the people bleeding out on the floor or those who can’t pee and are chancing a bladder rupture…like for real.  Ok. I feel a bit better getting that out…can anyone here tell that I’ve had my own recent shitty and ridiculous ER experiences?

Nah..of course not . lol

So the real issue I want to touch on here is that no one wants to do their jobs anymore. Doctors don’t want to learn about things that may not make total sense to them the first time they hear it so they pass it off as bullshit…just like the front office people don’t want to pass on messages or schedule your appointments correctly or give you the copies of the records that you need so you can get your damn surgery the following monday. They don’t want to believe that you may know exactly what you talk about when you walk into an imaging place to get a pelvic ultrasound with a full bladder and leave you sit there for an hour regardless of how many times you’ve fucking told them that putting you in this position will fuck your whole shit up and maybe make you have to self cath for the first time in 3 years….just like when you get tests run and no one calls you with the results let alone answers the phone when you call to get them yourself. It baffles me. Maybe it’s the change in the times but I”ll tell you somethin…’ when I was growing up I was taught that you get rewarded for a job well done and that if you are lucky enough in this world to have a kick ass job that offers you money so you can pay your bills, put food on your table, and insure that you have a roof over your head you should do your job and do it well. It’s a thing called work ethic…and more and more I am seeing it disappear out of our society. It scares me. It’s a problem. I don’ t like it…so I shall whine about it to all of you if you should choose to read this thing through.

I’m not saying that everyone has to be on point all the time. Afterall, I am a really freakin’ reasonable human being and lord knows I am rendered completely useless when I am emotionally distraught  but, the thing is that once you have your shitty bad day or week even, get back on the ball and do your damn job. It effects everyone involved when you don’t.  It absolutely astounds me at the amount of “dont give a fuck ” that goes on in our healthcare system and It’s going to be insane in 2014 when Obamacare kicks in and then chronic pelvic  pain patients will have to wait 8 months to see a urologist or pain management doc as opposed to a few weeks or a month and all pain meds will be regulated in a way that only cancer patients are allowed to have them. I can’t wait. It’s going to be amazing…. *chokes on the sarcasm and take a big swig of we’re screwed to wash it down with.

So…my point is that people in need of health care are made to feel crazy enough by feeling like shit, not knowing what is wrong, losing parts of themselves during the time that they are in pain that they just want to get back, not being able to be seen or get records they need to be able to go to the next doc who will probably tell them that they don’t know what’s wrong, or having to sit in a waiting room for 15 hours because someone forgot you were there, stubbed their toe last night, or just want an excuse to get out of work. It’s just that it’s  hard enough. I just wish that the people who went into healthcare whether in a treatment or front office sense would either do their jobs or move on…because at the end of the day the people who are sick just want answers, to feel better, and move on with their lives too. This is something that needs to change. It has to. Everyone deserves medical treatment if they go asking for help and everyone should be able to acquire the materials they need to find help elsewhere if their first attempt doesn’t work out.

I have found that in dealing with my new found medical issues (Not IC related) over the course of the past few months that all of the problems I used to experience as an undiagnosed IC patient back in the day are very much still there. Such as having to know what to say to the docs in the ER to get them to take you seriously, acquiring records, making appointments, getting tests run etc….along with 5 trillion new problems that come down to a loss of work ethic and carelessness. Its sad ….truly. And I want nothing more for it to change and for people to find the help they need. I just pray that something gives….but you won’t catch me holding my breath for anyone else to change’s up to the patients to demand better treatment, efficiency, and accountability. Just think… if every patient who has ever been done dirty by the healthcare system put their foot down at the same time it could possibly draw some attention…or maybe that’s just me being hopeful and at the end of it all it really wouldn’t change shit.

Oh the meantime, one can hope. And I do.

*** Just because it’s the right thing to do.

Yes. I bitch…a lot…and I write about my opinions and things that I feel strongly about…which is everything I wrote about in this piece but I do want to say that not all docs, nurses,  and front office staff are bad or complete asscanoes and I think that’s something we have all ran into during the various courses of treatment that we chose to take. I do thank all of the health care professionals who do take their patients seriously and do try to find something that works for them so that a comfortability factor is reached. I wish there were more of those in this world…for all of us..or maybe just ones that are easier to find so we didn’t have to go through 3248234u32 bad ones before finding the one good one who decides to help no matter what.

Just throwin that out there. Just cuz i like to throw things…

Easy dismissal = Pure ignorance & Thoughtless Notions.

I’ve been needing (yes needing) to write a piece on this topic for quite a long time. Usually, when I am so inclined to spout my thoughts and feelings on an issue I just sit down and do so with no questions asked and absolutely no procrastinating. Unfortunately, this subject deserves pure thought, passion, and patience (and we all know that patience is not something that comes in abundance in the Taliverse). This is something that has plagued my thought process for the past 7 years of my life and continues to do so on a daily basis. It is not an easy subject to handle but I plan to do so in a way that will give you no choice but to think about it from my point of view. I have always had a knack for making people see things my way, if only until the end of my ran,t but at least you will have thought about it in a little less of a close minded manner for the next 10 minutes of your life.  That to me is a start and something that I’m willing to accept for now. In light of September being IC awareness month, I feel this is, in fact, the right time to challenge the non-believers and ask just one question; one question in many different ways;  Why, pray tell, do you people think that a bladder condition which causes massive amounts of acid like piss , UTI  (urinary tract infection)like symptoms when there’s no infection present,  along with dysfunctional abdominal muscles that cause painful pressurized stomach spasms all of the time,  painful sex due to unruly nerve endings, and constant vaginal discomfort are all so unbelievably impossible?
I want you to stop right now and actually ponder what it is about these conditions that make you shun the possibility of them being real  so quickly. What about these problems is so laughable that it causes families to break up and lifetime friends to mock the chronic pelvic pain patient uncontrollably?It’s something I’ve always wondered and something that I would honestly love to hear from all who doubt. Matter of fact, I plan to hear from all the doubters, in excess,  but only after everyone opens their ears to me first.  I’ve been listening to people tell me that it’s all in our heads for years and quite frankly I think it’s time to ask you why your brain tells you that the pain that so many of us feel in this world is so impossible. How could it be so inconceivable when there are so many other conditions out there that are readily accepted by the you (who just so happens to be  the typical IC/Chronic Pelvic Pain non believer) and the rest of society?
I really want you to think  about this. Mostly because I feel  it’s  important that there’s a thought process behind the non-belief. I don’t want to hear you don’t believe because you’ve heard someone you know who knows someone you know that has these conditions and that they’re not real or  because you’ve heard a doctor say that the pain can’t be explained therefore the pain does not exist. I want to know why YOU yourself do not believe in the possibility that these conditions destroy so many people and then…after you’ve done that, please continue to read on. If you choose to read on with an open mind,  hear me out. If you aren’t able to do that then please by all means run yourself over with your own car in your own driveway as many times as it takes because in all honesty I don’t see how you can survive in a world of ever changing things…technological and medical advancements, wars, debt,equal love, and murder  if you cannot open your mind’s eye to every possibility out there. It’s not a matter of opinion but a matter of how in this day and age can you not think that anything is possible?With that being said…I shall start.Herein lie some very important facts. Yes, facts.Proven.

Medically accepted.
The dictionary definition of fact is simply this:
1. something that actually exists; reality; truth
2.something known to exist or to have happened: Space travel is now a fact.
3. a truth known by actual experience or observation; something known to be true: Scientists gather facts about plant growth. 

So what I am about to give you as a basis is pure fact.
The vagina, aside from being used for the typical purposes in life such as:
sexual intercourse
child birth
and housing for other  important body mechanisms (ex.urethra, vulva)
 is really nothing more than a massive muscle. 

If you don’t believe me, look up the anatomy of a vag. The walls are made of muscle and nerve tissue just like all of the other parts of our body that are required to move, handle loads of pressure, and help control certain activities. The concept of painful sex seems crazy to people and yet they can easily believe that one can have mouth pain…joint pain…quad pain.. reoccurring back muscle spasms….. even controversial conditions such as fibromyalgia and RLS  are widely accepted by the public as well. People are so ready to prance around, with their charlie horses and all, banking on the notion that their legs get constant muscle spasms, for example,  Restless leg syndrome,  for no reason other than the fact that the muscles and nerves in their legs don’t know how to act right,  but they can’t believe that a vagina could hurt.
Logically, it makes no sense…which makes the whole thing just 100% illogical and ill-thought out. Actually, it seems not thought out at all.
Afterall, a muscle is a muscle…is a muscle…is a muscle.
Do you see what I’m getting at here?
Think of this….if your running/jogging form sucks but you continue to run every day in the same way that you always have, you will forever be battling shin splints, stress fractures, and sore leg muscles. You will most likely smarten up at some point and attempt to fix your form and most likely you’ll expect those pesky symptoms to go away. Unfortunately, your legs have been trained to run the shittiest way possible for your entire existence and they got used to it.  This means that even though you’ve corrected the “shitt form” situation, your legs know nothing up until this point in their lives but the wrong way. They continue to hurt and wreak havoc on your training schedule regardless of your early attempts to fix the problem primarily because wrong is all they’ve ever known and also because there is a certain amount of damage that has already been done from years of shitty treatment. Makes sense yea? So with all of that being said I would like to explain a few things about Pelvic floor dysfunction.
Pelvic Floor Dysfunction usually goes hand in hand with and helps exacerbate the other conditions a typical CPP usually has, such as Interstitial Cystitis and Vulvodynia or Vulvar Vestibulitis.  That’s something to be kept in mind. When looking at the pain a person goes through you have to look at the whole pie, rather than just a slice. But for now we shall focus on PFD. (Click on all the links to see the scientific/medical explanation for this condition because you’re not going to get it here….ain’t nobody got time for that)
The easiest way for me to describe whatPFD is like goes a little something like this….You have one rubber band…that’s it.It has to last you your entire life for whatever you have to use it for.

Hang shit from it, hold shit together,pull your hair back, snap people in the face with it, I don’t care but you only get one.

You don’t get to put it in  a safe place and hide it just to prove to the rubber band god at the end of your days that you still have your one sole rubber band and that it’s still in good shape.

It must be used.

Itmust be the only one in your life.No cheating.

No whoring around with hair ties and other means of elastic allowed.

I’m watching you and your rubber band and so are the rubber band gods. If you’re a 2000 or later model human you probably know how important it is to keep this one rubber band healthy for the duration because there is medical information out there to tell you how to keep the elastic supple. Most 1999 and before human models probably weren’t handed this “how to keep your elastic supple” information when they were first given their one lone piece of elastic because no one really had that much  helpful information….if you’re having a hard time following me, I’m saying that the older generation didn’t have the internet….we, on the other hand, have all the information we could ever need right at our fingertips…on our couch or on our phone if we so wish.

Moving on.
Some people start out treating their rubber band well and some people are just now playing catch up and trying to make up years of “rubber band abuse” but the moral of the story…regardless of when you were given your rubber band and what info was out there when you were first gifted with this lovely circular piece of love,  is that you have to make it last.
You have to  keep it strong.
Keep it from breaking in two.
Don’t overstretch it but be cautious to not under stretch either.
Don’t overwork the thing and if you do make sure you’re doing so in the right form.
Teach your band good posture.
This will ensure that the pressure this  band must ensue is distributed equally over the entire circle and not just one area….what happens if we put too much strain on only one section of something? This is easy. It breaks. Remember, breaking is not allowed…nor is it ok, and if it breaks,  it hurts. It hurts because some other part now has to pick up the added pressure and try to continue to do its duties properly. It lessens the effectiveness of the entire process. Some people’s rubber bands have gone through some pretty traumatic events….child birth, for one, is a major culprit here. Other problem children include:  accidents, surgeries, abdominal muscle tears, and downright under-use, which does nothing but result in a weak pelvic floor that can’t hold up the other organs it’s supposed to…*coughs and clears throat” …I mean weak rubber band. Scar tissue is another big issue here. Imagine that your rubber band breaks and you tie a knot in it to reconnect the circle….it keeps breaking and you keep tying more knots. Now it doesn’t maneuver smoothly and things that have to hang from it get stuck on the knots therefore putting extra pressure on the un-knotted parts. This equals yet another issue and also equals long term fail. Long term fail equals painful movement…un-smooth movement, if you will, and if things don’t move right for a long enough time everything eventually starts to function at a lower level of effectiveness.
Are we starting to understand the concept of faulty muscle movement? Pelvic floor dysfunction is something that can be managed but it takes a lot of retraining…. especially after years and years of misuse.  It takes months and months of internal physical therapy, scar tissue treatment, and a shit ton of pain. It hurts like hell because some of these abdominal muscle knots have been living there comfortably for years and they don’t want to be evicted. Think of when you have a neck knot for a week and finally your boyfriend digs his thumbs in there to get it out. It causes a headache and that sick feeling in your stomach. Imagine having that knot in your stomach and having a penis jiggle shit around in there every time you have sex. It hurts. It puts pressure on internal muscles that feel like they need to contract to get pleasure out of the whole insertion experience but they can’t contract because there’s a massive knot in the way that’s making things go all lopsided…And that is only one aspect of painful sex….This is just the first base we’re going to touch about the subject. Why? Because I need you all to understand the whole picture….So we will now be moving on from the rubber band *coughs and clears throat again”..I mean Pelvic floor onto some of the other pain causing aspects of a CPP patient’s life.
When things go all lopsided because of the pelvic floor dysfunction issue it then puts pressure on the bladder  causing Interstitial Cystitis to rev itself up to asshole mode and causes extra friction on the vulva resulting in Vulvodynia or Vulvar Vestibulitis to start throwing a temper tantrum. Think of it as sibling rivalry at its best. They all must work together to get the chores done but do nothing but annoy the shit out of each other along the way. Everything stops working together and everyone has to go to separate corners to be on a time out until all parties have calmed down. This works great with children. Not so much with organs that rely on each other to get shit done.
Moving on…again.
Interstitial Cystitis is simply this….our bladders are hypersensitive to anything acidic. Actually, I can one up myself…our bladders are hypersensitive to EVERYTHING. This is primarily because the Glycosaminoglycans (GAG) layer of our bladder does not provide enough mucous lubrication to protect it from harm.
<———-This picture is what a normal bladder is supposed to look like….
  <—————–This is not a normal bladder…This is what many IC bladders look like. This shows petechial hemorrhaging in the bladder lining which causes there to be bloody ulcers….kind of like a stomach ulcer but on the bladder lining instead. You know when you have a bleeding stomach ulcer and nothing acidic can be drunk or eaten because it’ll make you bleed out and hurt like hell? Same concept…just a different organ that’s also affected by the acid.
It burns.
It bleeds.
It hurts.
It’s not fun..
So when some of you really rag on your IC friends about why they don’t go out to dinner anymore etc. etc…think about how not worth it at all it is to go out to dinner and drink pH balanced water and eat saltines while you guys get to eat whatever you want and have a cocktail. We’re not mad at you cuz you can..but you shouldn’t be mad at us cuz we can’t. Not cool kids. Not cool. It’s more enjoyable for everyone to stay home.  For those of you who have had a urinary tract infection take a moment and think about how terrible it was. You probably felt like you  had to pee but could only pee 3 drops at a time regardless of the fact that your bladder was full and felt like it was going to explode. Your vag and bladder also probably burned like a hookers forehead after receiving the sign of the cross by a priest in Sunday mass in the South. There was probably no hope of getting comfortable and i’m guessing there’s a good chance you couldn’t stand the pressure from your underwear or jeans.  I’m not making this up….This is typically the general concensus when it comes to UTI symptoms. Now that we’re all in agreement on that…please realize that IC for most people (for some certain symptoms and pain levels vary) feels like that stupid UTI but is nothing like a UTI (there’s no infection or bacteria present) for 24 hours a day..7 days a week..and 365 days a year. It sometimes never lets up. Sometimes it does…and then it comes back and it officially gets called “I’m flaring”. This is universal IC language for “my bladder is being a douche canoe and is wearing its asshat today”.  At this point an IC patient starts to panic. They have school to attend, kids to feed, jobs to go to, and a life to live. All of these things come easily when not in a flare. How do you do these things when you have to piss 3 bloody acid drops every 3 seconds and still function like a normal human being?  How can people expect other people to function properly all while prancing around saying it’s in your head?  I’m still hoping  for a logical explanation and am waiting with baited breath for the person that wants to give me some insight into this “it’s in your head” topic.
Time to put our rubber band and bloody body organ ulcers together in a bag and shake them up.
Ready?   Go…
Time for another scenario.
The rubber band is tired and wants to go to bed. It has a cramp. The bladder is bloody and acid burned and would like to go to bed as well…unfortunately it’s full and has to relieve itself.
*Bladder sends nerve signal to the brain that says “bitch…time to go sit on the porcelain throne and attempt to pee”
*Brain says…”ok legs…time to move. Pull pants down…time to sit ..or stand, depending on what appendages you have and ahhhhh release”
Except the issue is that the rubber  band is already sleeping and can’t comprehend this release signal thing. So it gets up and works for a total of 3 seconds before hitting the snooze button and going back into a coma.
*Bladder gets excited and says”ahhhh yes thank you for getting rid of this acid urine I feel so much…oh shit. It’s still there. Ow ow ow ow ow ow ow ow ow ow….damnit. Ow. Lets try this again….and repeat”
*Brain tells bladder…you are not done yet…
*Bladder says, ” yes thanks mom I know but I can’t contract”.
*Brain says…”damnit abdominal muscles can you get up and take out the trash please…or no allowance for you”
*and it says “sure mom” as it gets up contracts for 3 more seconds or until mom walks out of the bedroom and immediately crashes back into its bed until the next time mom comes a knockin’.
This is the typical cycle. Now of course..the more times you start and stop the process the more strain gets put on the knots in the Pelvic floor and the more acid gets sloshed around the bladder lining causing more and more irritation and more muscular pressure. Things can never work running on a system like this. The constant body part battle does nothing but piss off the other sibling only causing a rebellion and the silent treatment. In other words, mom gets nothing done in the morning only causing her to be less patient and less likely to let you go to the football game this weekend. The bladder/trash can never gets emptied and you don’t end up with the allowance you need to go out this weekend anyway and the pelvic floor gets more and more tired from having to constantly wake up and go back to sleep before finishing a real workout. The pelvic floor then also becomes one of the most hated family members because it’s lazy.You can’t get that mad at the bladder because it is, in fact, quite broken and not of its own accord. Laziness is not the bladder’s issue….the bladder wants to be a surgeon but doesn’t have any hands. That’s an automatic fail.
Here’s some more  food for thought,  or if you prefer,  another notch in the don’t dare argue this with me belt. Would you want to have sex with UTI symptoms? And don’t automatically say no just  because you are running with the concept that it’ll spread the infection. Could you imagine getting any sort of pleasure with those types of symptoms? If you say yes…I hate your face and you’re a liar. Or you’re just a sadistic bastard…which in that case is a totally different argument and you can carry on. I will give myself a LOL here considering I’m giggling while writing this…

Can we see how things work against each other to wreak extra havoc?

Good. Let’s add another one to the pile.


Vulvodynia has no one specific cause. There are shit tons of speculations as to what can cause it but those speculations are not what i’m here to argue today. Look it up yourself and see if any of the people you so kindly tell do not have this have been through any of the many possibly causes. Once we get to that point we can continue.
Vulvodynia is pain of the vulva…cleary that’s for women considering men do not typically have a vulva or clitoris. If you didn’t know that.. people please take a damn anatomy class. This is just me and my thought process but the best way that I can describe it when it comes to my own Vulvodynia  issues is that it is a type of vaginal nerve damage. Either the nerve endings in the skin of my vulva are on high alert at all times and love to send and receive the wrong signals or I did so much damage to that very sensitive area that the nerve endings are on sabbatical. either way…the symptoms are all over the board. Some people experience a sandpapery feeling with any type of touch…and that doesn’t mean just someone elses fingers or body parts but could also be underwear, water, pants, a speculum etc. Some people get stabbing pain like what a back spasm feels like but instead in your genital region. Some people can get through every day with no pain but the second any amount pleasure giving is involved it feels like someone just used a brillo pad to clean your vagina and poured vodka on it before inserting anything phallic. Ouch. Not fun. Not one symptom. There are many variables here and that doesn’t make it any less believable. Some people get in car accidents and break their backs and never walk again. Some people get in car accidents lose both of their legs and have brain damage but eventually do walk again. All of our bodies are completely different from each other. Granted, we typically should  have the same anatomical and physical make up but not everyone will get lung cancer from smoking just like not everyone’s vulvodynia or Vulvar Vestibulitis will incorporate the same symptoms from the same activities. It also means the treatment that worked for me may not work for the next VV patient and so on. If anyone would like to argue this…now is the time. This is the same reason why some people survive certain things and others don’t. There are so many factors involved in the human makeup. There’s genetic disposition, body type, autoimmune, blood type, allergies…these are all things we as a community accept.
So why is it so hard to come to terms with when it comes to the difference in pain levels and pain control Chronic Pelvic Pain?
Again, I scream, Why?
When you take all these things and put them in the shit bag and shake them up together,  it makes perfect sense. Think of the Vulvodynia/Vulvar Vestibulitis as the black sheep of the family which is inevitably going to act like an asshole every chance it gets just to defy “mom”. The bladder is trying its best to get rid of all of the bad within itself despite being born with physical disabilities, and the rubber band/Pelvic Floor is trying to stretch every way possible to help everyone out but never is able to slow down and take care of itself. It’s your typical dysfunctional family…which I think should be pretty easy to relate to. I’m just sayin…
As a side note:
Dyspareunia means painful sex for any reason (all of the above conditions included plus many, many more) and this is where all parties who experience this come in. Men included. Don’t think they’re special. Both genders can be plagued with this ridiculously shitty issue. It excludes no one. It’s not racist. It has no age limit. It goes by its own rules. It’s an asshat. Just wanted to throw that umbrella up in there during a drought because I could.
So. That is my debate. It’s simple…oh so simple. All it requires is some “real people” thinking. Use those brains we were blessed with. Being so damn close minded doesn’t make anyone look pretty. It doesn’t suit you. It makes you look dumb.
I hope most of you non-believers have a better understanding now. Or at least have started to open your mind a bit…that’s really all I could ask for. For those of you who are still sitting there with that pompous look on your face talking about “why can’t they do anal sex instead if regular sex hurts and “(ps….the pelvic floor is still involved…dummies. What do you think holds every organ and muscle up in the abdominal region)  I can only pray that you don’t ever get diagnosed with an incurable condition/s that is not widely accepted or studied  because you will never be able to handle people acting this way towards you. I hope for your sake no one you genuinely love and care about  gets diagnosed with anything that seems unorthodox as well….it’s very unbecoming to those you love when you treat them like a piece of rotten pie because you don’t want to try to understand the “sick” concept. This is just a word of advice. All I can do is offer you that…and I have..and I will…and you will hate me…..and that’s ok because, quite frankly. I could do this shit for days and I don’t really mind when people don’t like what I have to say anyway. Afterall, I’m always up for a good challenge and Lord knows I get a sick enjoyment out of a good debate. Can ya tell?
**disclaimer- I am not a doctor, nor do I plan on being one. Not for humans anyway. Everything stated in this article is my personal opinion and should be treated as such. Please seek a doctor’s advice and guidance concerning diagnosis, treatment, or anything medically startling that could require hospitalization. I, Tali Keteri and The rambling’s of an IC patient make no representations as to the accuracy, completeness, suitability or validity of any information on this site and will not be liable for any errors or omissions in this information or any damages arising from its display or use.