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 a topic I just sit down and do so with no questions asked and absolutely no procrastinating. Unfortunately, this topic deserves pure thought, passion, and patience (and we all know that patience is not something that comes in abundance in the Taliverse). This topic 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. I’m quite surprised I haven’t attempted to tackle this subject earlier but as I said before…it deserves the utmost dedicated attention and the words that I write to do said topic a complete and utter justice. This is not an easy subject to handle but I plan to do so in a way that gives you no choice but to think about it from my point of view. I have a knack for making people see things my way if only until the end of my rant 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 think that a bladder disease that causes massive amounts of acid pissing and uti (urinary tract infection) symptoms with no infection, dysfunctional abdominal muscles that cause painful pressure and stomach spasms all of the time, and painful sex due to unruly nerve endings and constant muscle spasm is so unbelievably impossible? Why?
I want you to stop right now and actually ponder what it is about these conditions that make you shun the possibility 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 and I plan to, in excess, but only after you hear me out. 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 head tells you this pain that so many of us feel in this world is so impossible while there are so many other conditions that have less of a scientific and medical explanation out there than these 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. It’s important that there’s a thought process behind the non-belief. Not because you’ve heard someone you know who knows someone you know that has these conditions and that they’re not real. Not because you’ve heard a doctor say that the pain can’t be explained therefore the pain does not exist but why YOU yourself do not believe in the possibility that these conditions destroy so many people. After you’ve done that, please continue to read on. Open your mind before you read on and honestly 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?
So…
Herein lie some very important facts. Yes. Facts. Proven. Tried. Medically accepted. Facts. 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, pleasure, etc. 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…..fibromyalgia is widely accepted as well. People are so ready to prance around, charlie horses and all,with 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. Rather…not thought out at all seems a bit more like it.
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 form sucks but you continue to run every day , you will forever be battling shin splints, stress fractures, and sore leg muscles. You will most likely smarten up at some point and fix your form and most of these things will likely go awa. Unfortunately, your legs have been trained to run in shitty form style and even though you’ve corrected the form issue 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 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 patient, 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 as a 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)
The easiest way for me to describe what PFD 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. It must 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 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. Some people start out treating their rubber band well and some people are playing catch up 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. 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 insure 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. There are accidents, surgeries, abdominal muscle tears, downright underuse 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 unknotted parts. This equals issue. This equals long term fail. Long term fail equals painful movement…unfluid 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…
Interstitial Cystitis is simply this….our bladders are hypersensitive to anything acidic. This is primarily because the Glycosaminoglycans 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….
<—————–There can also be 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.
Ok. Forging ahead….
Time to put our rubber band and bloody 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 because 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 that is 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? Why?
So 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 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 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 takes 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:
D
yspareunia 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?
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**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.
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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.
It’s funny how you envision things a certain way when you look towards your future with someone. You weigh the good and the bad. The pros and the cons, and you make decisions based off of your emotional involvement, gut feelings, intelligence, and wisdom on the subject at hand. You may start out thinking that you can persevere through any hardships that come your way, ready for any challenge, trial, and tribulation and you may believe this with every fiber of your being. But when does it become too much? When does it become more of a settlement and business arrangement as opposed to something that you’re both in for advancement within yourselves and with each other? When does it become too stressful? When does it become just routine? And how do you proceed when this realization is brought to light ?
