Yesterday was the dreaded day. The day when I, well, my insurance company really, payed someone to put their finger in my arsehole…all in the name of healing. Now, I realize that I haven’t written in awhile about what I’ve been doing to manage my chronic pain issues, which in many ways, became the focus of this blog last October when my life was torn asunder by a multitude of unexpected diagnoses. And I realize I probably could have found someone on Craigslist or some other internet site who was more than willing to stick their horny little finger in my rectum for free-hell, maybe they’d even pay me for the pleasure of doing so (but that gets into all sorts of murky waters and possibly illegal issues and who can afford to lose the job they don’t have?). But now dear reader, I’m back at it-giving you a glimpse into a world hopefully you’re grateful that you aren’t living in.
Seriously though (I have a really bad habit of joking about the things that scare me the most) I had to undergo a humiliating and excruciatingly painful rectal exam by a Colon Surgeon before I could even be cleared to have someone paid to put their finger in my bum! Perhaps I’ll write about that procedure some other day, when I’ve recovered a bit from the shame of it. Oh, and speaking, err, writing about shame, my early childhood abuse experiences left my anything but ready for yesterday’s procedure!
However, I feel I am at my wits end. Sitting, hell, sleeping on my back has become such a source of pain that I can no longer do many of the things I formerly enjoyed in life like riding a horse or a bike (for fuck’s sake riding my partner is even a rarity!). Long, rambling car rides, writing for hours on end…anything that requires me to sit on my beautiful ass for more than 45 minutes to 2 hours (on the best of days and a heavy dose of pain killers) is just about out of the questions. Fuck, I’ve even been woken up from the little sleep I manage to get because the pressure on my rectal region is too intense…from a friggin” mattress!
I haven’t written about this yet either (although I swore I did…that’s the problem when you are always writing in your head…you tend to forget what you actually put down on paper, or cyber paper), but over the summer I was diagnosed with Pudendal Neuralgia by a specialist in New Hampshire who was fairly adamant that the only way to relieve my pain, if there was even a way to relieve it, was to have MAJOR surgery, which would involve two cuts deep inside my each side of my vagina to, “vaporize the ligaments which (are thought to) entrap my Pudendal Nerves”. This too, is a blog for another time, but in a nutshell, the doctor hardly evoked confidence from me, as he could not, or would not, answer most of the questions we had for him and he repeatedly stated that this procedure worked best, when it worked at all, on people who had this problem with a short on set; in other words, not so much with people like me who can easily remember being 5 years old and unable to sit without severe pain!
In the months that have followed the bittersweet and very uncomfortable 8ish hour drive to New Hampshire, I have received an intense amount of pressure to have the surgery and to not have the surgery. I left the doctor’s office in tears, all but refusing to have it done, unless it became all but impossible for me to sit, at all. I figured I’ve managed to cope with it, on so many levels, for the better part of my life, why the fuck would I want to undergo an incredibly invasive procedure, having yet another man I don’t trust violate my body once again, to have my vagina sliced open, to be on bed rest for roughly two months? And if all goes well after that, have to wean myself back into sitting at 5-10 minute increments and wait possibly 2 years for results which might never happen??? The whole concept seemed ludicrous to me!
The research I did, which in and of itself, was a difficult process (try Googling Pudendal Neuralgia and see what you come up with!) also helped confirm my belief that surgery, at least at this point in my life, even if, as my mom likes to declare, my insurance should pay for all or most of it, is not the right choice for me. So, that is what led me here…to having a finger in my rectum.
Here I was, again with Karen, my Pelvic Floor Physical Therapist. She’s the blessing from the universe who helped stretch out my vagina (although I may have used a pseudonym for her in earlier blogs, Karen is her bona fide first name) when I was suffering the worst of the Vulvadynia and Pelvic Floor Dysfunction (see earlier blogs). Now, after being cleared by the butt doctor, Karen was going to stick one of her slender, gloved fingers into my rectum in the hopes that doing this-for who knows, maybe a few sessions, maybe several months, would be enough to release the tension on my Pudendal Nerves and thereby avoid any need at all for surgery.
Although I was scared out of my mind, wanting desperately to clench my ass so tight that she couldn’t do anything at all, and spent the week leading up to my visit with her dreading THE DAY, even going so far as to make “jokes” on Sunday about how I was going to have a finger in my ass on Monday, there is no one in the world I would let do this, other than Karen. The amount of trust it takes, probably for anyone, to be curled up in a fetal position while someone lubes you up with Slippery Stuff and as gently as possible inserts a gloved digit into your poop shoot, at least in a medical setting, is tremendous. Now, this doesn’t mean I haven’t enjoyed some forms of consensual anal play in my day, but the very nature of it being done in an attempt to correct a medical problem, well, for me, that changes everything! That and the fact that the Ass Surgeon who had me bend over a rectal table for her exam, about broke my tailbone in THE MOST PAINFUL RECTAL EXAM EVER!!! I was none too keen on having anyone back there in say the next three millennia or so. Then again, my little air cushion that I bring with me everywhere I might want to sit, isn’t helping much and I’m not too keen on surgery either. Pasta fungul!
And so, after a plethora of questions…yes she knows what Pudendal Neuralgia is, yes she’s treated lots of women with it, no she doesn’t think I should have surgery if it isn’t what I want, and so on, we finally got down to the butt business. And as long as I kept reminding myself why I was there, why this was happening and that I needed to breathe (and of course, resorted to my defense mechanism of continuous questioning) it wasn’t that bad. That is, as long as she stayed away from my tailbone. If Karen’s finger was anywhere near my tailbone I wanted to projectile (vomit?) heave her out of my areshole it hurt so much! And as with my vaginal stretching, I was inexplicably tighter on one side (this time my left) than the other.
The entire procedure lasted maybe five minutes and that was that. She removed her finger as she promised she would and left the room so I could wipe the remainder of the lube of my rump and get dressed in privacy, although after that ordeal does privacy really matter? What I would latter find out was really the worst part of the whole finger in ass process was the most horrific smelling fart I’ve ever released in my life about a half hour after I left Karen’s office, enroot to my therapist’s office; and believe me, I’ve impressed some guys with what I can unleash! That and an almost uncontrollable need to shit every two hours or so. And I’m not talking about a little bowel movement here and there. I mean, the hardcore, been out drinkin’ all night, or Thanksgiving shits-the kind you worry could break the damn toilet and certainly leave a trail of evidence behind when you flush! All friggin’ day and most of the night long I crapped into the porcelain god. My bum began to bleed from wiping so much and even though we’ve stocked up on what I thought was enough toilet paper to last into 2011, I’m afraid if I keep seeing Karen (and it is supposed to me twice a week starting next week) and my bowels keep moving like this, we’ll need to buy a storage unit just to hold toilet paper! She has such tiny fingers too and she only used the very tip, I don’t get it. I will definitely have to ask her about this before she does any butt work next week.
Criminy I hope this is a better idea than slicing open my vagina! Ugh! Just re-reading that last sentence makes me want to vomit all over my keyboard…yes, yes a finger in my ass sounds much better than cutting open my vagina any day! I saw the movie Seven, and while not quite the same thing, it still conjures up images of the razor embedded leather cock harness. I’m fairly certain that’s a sign I’m not ready for surgery even if I have to shit for hours after seeing Karen!
Showing posts with label pelvic pain. Show all posts
Showing posts with label pelvic pain. Show all posts
Wednesday, October 20, 2010
Thursday, November 19, 2009
And The Doctor Says…(Part 1)
However, as the visit progressed beyond the internal exam, I struggled to understand what the doctor was telling me, what the problems are and what the treatment options are. It became increasingly difficult not to break down in heart wrenching sobs of relief and additional pain. On the one hand, I wanted to be believed. I wanted to know that I hadn’t been making all this stuff up for so long. I wanted to know that there are medical and scientific reasons for what is happening to me. Hell, part of me even wanted really fancy names to banter about the next time the pain in my side causes me to double over unexpectedly at the dinner table, just inches away from my food. I wanted to be able to wave banners in the wind proclaiming for all the world to see that I really am in pain, the doctor said so (as if that many people in the world would ever read my banner or care about my pain anyway!).
Yet, most of all, I did not want to feel the way I felt, the ways I still feel, once I got the diagnoses. I wasn’t prepared to feel so vulnerable, so raw and defenseless. I wasn’t prepared to be believed and so I went to my appointment alone. And as soon as the doctor walked in the room and told me I have a lot of issues going on, I wanted to hide in the corner, curled up in a ball, sucking my thumb with my back to the world. I wanted to give up. I wanted my partner to be there with me.
I wanted this to all go away. To go back “in my head” where it really belonged.
When the doctor told me he believed me before he even asked me what was wrong, I wanted to collapse into his arms and heave out the rancid tears of years of being disbelieved. I wanted the snot and the hurt and the relief and concern to flow from me on to him until I was cured. I also wanted to run in the other direction, screaming like a lunatic in denial.
I didn’t know what to do if I was believed, if the pain truly wasn’t all in my head. I wanted my partner to be there, to hold my hand, to make it all better, to take it all away. I wanted it to be a bad dream. I wanted it to be yesterday, when I was only afraid I wouldn’t be believed. I desperately didn’t want it to be today when I was believed.
All those emotions were before the exams and the conversations, before he told me what he thought was wrong. Before he told me how he thought we could fix it and it was most certainly before we discussed the harsh reality that I don’t have health insurance.
When I was finally able to extract my convulsing thighs from the stirrups, get dressed and pee for the third time since I got to the doctor’s office, the evaluation continued in Dr. E.’s office.
This is where he reviewed the bombshells he dropped when I was half naked (a state I prefer to be in when some stranger isn’t peering and poking his way between my thighs!).
While Kris appeared to be taking notes on diagnoses she must have heard dozens of times before, Dr. E. explained each of the following diagnoses (again) to me and three-ish weeks later, I remember about as much as I did when I sat, dumbfounded, in his office.
Apparently I have (which I’ll try to sum up as best I can):
Anxiety- Which while I won’t usually admit it upon pain of death, is true. It isn’t normal to be in such a constant, world hating state of tension and fear.
Chronic Pelvic Pain- The definition of this includes pain anywhere from around the belly button to the middle of the thighs and everything in between that region. Obviously this applies to me. It is also a condition which, due to its broad region, is different for everyone who has it. I have pain from just above my belly button, all throughout my uteral region (I think I just made that term up), my vulvar region, sometimes at the top of my left thigh, in my hamstrings and always in my lower back. Some of it comes and goes. Some of it persists, day after painful day, like a nagging sin I can’t do enough penitence for.
Lower Back Pain- Yup. My lower back as never been the same since I fell down a flight of stairs. But again, I was here about that damn ovary. I’d long ago accepted that my lower back pain was here to stay, at least until I got a job with insurance and could afford some more physical therapy.
Pelvic Floor Muscle Dysfunction- Apparently the muscles in my pelvis are (I think he described it this way) in constant “fight mode” from a whole slew of events and traumatic experiences throughout my life. According to Dr. E., these events are stored as “body memories” and are imprinted in various ways throughout one’s body. Sometimes you can live unaware of these imprints, but as they accumulate and the pain builds, eventually your body reaches a point where it can’t take it (or deny the pain) any more. Apparently I am at that point in my life. This explanation was also applied to my Chronic Pelvic Pain. So, since the muscles in my pelvic floor are in such a state of hyper stress and pain, they are contracted or in spasm, maybe constantly, and that is part of what makes it so fucking difficult to shit or piss or even have sex. Really super tight muscles don’t like to have things pass through them, no matter how vital it is that it happens!
Myofascial Pain- I think that this refers to the specific points on my body which cause various areas, such as my lower back, to go into spasms, but I’m not quite sure yet. I remember nodding my head along to Dr. E’s explanation, but my memory system was on overload a long time ago!
Iliopso and Psoas Spasms- This refers to specific groups of muscles which are in pain. And since the doctor’s office was thoughtful enough to send me home with a bulging packet of information, I can look back and see that these muscles run up and down my lower back (the Psoas muscles)…definitely pain there! And the Ilioinguial muscles run through your lower back, around your stomach (in fact, that is the source of the pain that I thought was my fucking right ovary), into the front of, and down part of each thigh. This would also explain why sometimes, out of nowhere, little demons on plows would tear their way through a small section of my upper left thigh, leaving behind an inexplicable row of centralized pain.
Sexual Pain- Here I’m not sure if Dr. E. is referring to my past horrible sexual experiences or to the pain I sometimes have during masturbation or penetrative sex, or to all of the above. While they ask about sexual abuse and rape on the intake form, he is clearly uncomfortable talking about these issues. In fact, he told me several times that while he needs to know if it happened (these experiences are part of the “body memory imprints”) he doesn’t need to know the details, nor does Kris, who asked me the same questions two hours ago. Both of their reactions to my revelations enrage me and in my head I shout at them, “It’s fucking child abuse! It’s not like asking about it is con-fucking-tagious! So don’t worry, I won’t hurt you with my memories!” But of course, after decades of training, I keep those thoughts inward and smile or something as he prattles on, and I try to give them some credit for at least asking the questions no one else wants to ask.
Eventually I am pretty sure he is talking about the pain I feel when being penetrated by whatever. He tells me that there are many layers to this pain, which, by this point in time, I can figure out for myself. These layers include all that I’ve mentioned above, plus whatever is going on in my head (which he tells me to discuss with my counselor, not with him) and the symptoms below.
I imagine I am nodding along like a puppet by this point. Sure, I understand. It all makes sense. I agree. I comply. I…I...I don’t hear most of what he is saying because I am so nauseous and so freaking overwhelmed, but please, I think to myself, do go on. I know you have other patients to see and I have overstayed my time.
The following additional diagnoses make me want to cry or bury my head in shame.
Yet, most of all, I did not want to feel the way I felt, the ways I still feel, once I got the diagnoses. I wasn’t prepared to feel so vulnerable, so raw and defenseless. I wasn’t prepared to be believed and so I went to my appointment alone. And as soon as the doctor walked in the room and told me I have a lot of issues going on, I wanted to hide in the corner, curled up in a ball, sucking my thumb with my back to the world. I wanted to give up. I wanted my partner to be there with me.
I wanted this to all go away. To go back “in my head” where it really belonged.
When the doctor told me he believed me before he even asked me what was wrong, I wanted to collapse into his arms and heave out the rancid tears of years of being disbelieved. I wanted the snot and the hurt and the relief and concern to flow from me on to him until I was cured. I also wanted to run in the other direction, screaming like a lunatic in denial.
I didn’t know what to do if I was believed, if the pain truly wasn’t all in my head. I wanted my partner to be there, to hold my hand, to make it all better, to take it all away. I wanted it to be a bad dream. I wanted it to be yesterday, when I was only afraid I wouldn’t be believed. I desperately didn’t want it to be today when I was believed.
All those emotions were before the exams and the conversations, before he told me what he thought was wrong. Before he told me how he thought we could fix it and it was most certainly before we discussed the harsh reality that I don’t have health insurance.
When I was finally able to extract my convulsing thighs from the stirrups, get dressed and pee for the third time since I got to the doctor’s office, the evaluation continued in Dr. E.’s office.
This is where he reviewed the bombshells he dropped when I was half naked (a state I prefer to be in when some stranger isn’t peering and poking his way between my thighs!).
While Kris appeared to be taking notes on diagnoses she must have heard dozens of times before, Dr. E. explained each of the following diagnoses (again) to me and three-ish weeks later, I remember about as much as I did when I sat, dumbfounded, in his office.
Apparently I have (which I’ll try to sum up as best I can):
Anxiety- Which while I won’t usually admit it upon pain of death, is true. It isn’t normal to be in such a constant, world hating state of tension and fear.
Chronic Pelvic Pain- The definition of this includes pain anywhere from around the belly button to the middle of the thighs and everything in between that region. Obviously this applies to me. It is also a condition which, due to its broad region, is different for everyone who has it. I have pain from just above my belly button, all throughout my uteral region (I think I just made that term up), my vulvar region, sometimes at the top of my left thigh, in my hamstrings and always in my lower back. Some of it comes and goes. Some of it persists, day after painful day, like a nagging sin I can’t do enough penitence for.
Lower Back Pain- Yup. My lower back as never been the same since I fell down a flight of stairs. But again, I was here about that damn ovary. I’d long ago accepted that my lower back pain was here to stay, at least until I got a job with insurance and could afford some more physical therapy.
Pelvic Floor Muscle Dysfunction- Apparently the muscles in my pelvis are (I think he described it this way) in constant “fight mode” from a whole slew of events and traumatic experiences throughout my life. According to Dr. E., these events are stored as “body memories” and are imprinted in various ways throughout one’s body. Sometimes you can live unaware of these imprints, but as they accumulate and the pain builds, eventually your body reaches a point where it can’t take it (or deny the pain) any more. Apparently I am at that point in my life. This explanation was also applied to my Chronic Pelvic Pain. So, since the muscles in my pelvic floor are in such a state of hyper stress and pain, they are contracted or in spasm, maybe constantly, and that is part of what makes it so fucking difficult to shit or piss or even have sex. Really super tight muscles don’t like to have things pass through them, no matter how vital it is that it happens!
Myofascial Pain- I think that this refers to the specific points on my body which cause various areas, such as my lower back, to go into spasms, but I’m not quite sure yet. I remember nodding my head along to Dr. E’s explanation, but my memory system was on overload a long time ago!
Iliopso and Psoas Spasms- This refers to specific groups of muscles which are in pain. And since the doctor’s office was thoughtful enough to send me home with a bulging packet of information, I can look back and see that these muscles run up and down my lower back (the Psoas muscles)…definitely pain there! And the Ilioinguial muscles run through your lower back, around your stomach (in fact, that is the source of the pain that I thought was my fucking right ovary), into the front of, and down part of each thigh. This would also explain why sometimes, out of nowhere, little demons on plows would tear their way through a small section of my upper left thigh, leaving behind an inexplicable row of centralized pain.
Sexual Pain- Here I’m not sure if Dr. E. is referring to my past horrible sexual experiences or to the pain I sometimes have during masturbation or penetrative sex, or to all of the above. While they ask about sexual abuse and rape on the intake form, he is clearly uncomfortable talking about these issues. In fact, he told me several times that while he needs to know if it happened (these experiences are part of the “body memory imprints”) he doesn’t need to know the details, nor does Kris, who asked me the same questions two hours ago. Both of their reactions to my revelations enrage me and in my head I shout at them, “It’s fucking child abuse! It’s not like asking about it is con-fucking-tagious! So don’t worry, I won’t hurt you with my memories!” But of course, after decades of training, I keep those thoughts inward and smile or something as he prattles on, and I try to give them some credit for at least asking the questions no one else wants to ask.
Eventually I am pretty sure he is talking about the pain I feel when being penetrated by whatever. He tells me that there are many layers to this pain, which, by this point in time, I can figure out for myself. These layers include all that I’ve mentioned above, plus whatever is going on in my head (which he tells me to discuss with my counselor, not with him) and the symptoms below.
I imagine I am nodding along like a puppet by this point. Sure, I understand. It all makes sense. I agree. I comply. I…I...I don’t hear most of what he is saying because I am so nauseous and so freaking overwhelmed, but please, I think to myself, do go on. I know you have other patients to see and I have overstayed my time.
The following additional diagnoses make me want to cry or bury my head in shame.
Friday, November 13, 2009
Inexplicable Pain, Part 2
At one point, I was prescribed Lupron which literally made me homicidally crazy. My first indication that something was wrong with me on this medicine should have come about two months after my first shot. It was early December and I was sound asleep, until my Christmas tree in the adjoining room fell over. Instead of reacting like a sane person and either going back to sleep or picking the tree up, I (and I am still embarrassed to admit this) began swearing at the tree, kicking at it with my bare feet, even jumping up and down on the tree!
I swear on my life this is true! At one point I paused for a moment and realized what I was doing hurt my feet, so I stopped just long enough to go back into my bedroom, put on shoes and commence jumping up and down on the tree again. Seriously, this might sound side-splittingly funny, but it is true. My sense of judgment while on Lupron was so skewed that I thought my reaction was perfectly normal and whats more, I couldn’t, I mean, could not stop myself despite the throbbing in my feet and the shards of broken ornaments everywhere. I couldn’t stop myself until I was so exhausted that I simply went back to bed, leaving the shattered tree on the floor until the following day.
Two weeks later, while stuck in traffic on Christmas Day, I literally pounded my head over and over on the steering wheel because I felt so hopeless and out of control, both because of being stuck in traffic and because I couldn’t control my body, my thoughts or my emotions any more. I don’t know if my sister, the only passenger in the car, was more scared for her life or mine.
The final straw for Lupron came about a month later, when, again stuck in traffic, I literally imagined what it would be like to kill the person in front of me. I mean I imagined getting out of my car, getting in to their car, putting my hands around their throat and squeezing the life-force out of them without any remorse…I could even feel in my hands what that would be like! It was one of the most horrible wake-up calls of my life and I had to stop taking the medicine because of the terror of my thoughts and what might happen if I stayed on it.
You may wonder why the hell I kept allowing myself to be a guinea pig to all these medical “treatments” and I often wonder that myself. But the heart of the truth is that even after my surgery and each new medical treatment, I kept feeling worse and worse each month and I just wanted the pain to go away. I just wanted to feel human. Instead I often felt like some grotesque blob that was being controlled by inexplicable bodily pains. I wanted so badly to believe that the next medical thing would cure me, and if it wouldn’t cure me, that at least it would give me some reprieve from the pain and the reassurance that this was not “all in my head."
A few years after the Lupron disaster, (as well as brief attempts to use the Nuva ring, which also didn’t work for me) I moved to Chicago. One of the few blessings to come out of living in Chicago was health insurance and a co-worker who referred me to a primary care doctor who had no idea what the hell was wrong with me. Instead of dismissing my pain, she was compassionate and humane enough to refer me to a new male gynecologist who did take me seriously.
St. Marc (as I will call him for this story) believed in me and in my pain. He also believed in my ability in my late 20’s to know for certain that I never wanted to have children. While he, like every doctor before him, refused to remove my ovaries or uterus, he did prescribe the Mirena IUD. He did this after carefully discussing with me what it was I wanted from my treatment and informing me that while I might like to have my ovaries and/or uterus removed, that likely wasn’t going to solve the problem. The IUD, however, should cause me to no longer have my period, which should quell the pain we believed was caused by the endometriosis (which flared up very month with my periods). Additionally, the Mirena doesn’t contain estrogen, which I cannot tolerate and should last for five years. I wanted that damn IUD more than a child wants to see Santa and a sack load of gifts on Christmas Eve!
In order to get the IUD, St. Marc had to battle his colleagues (I could hear them arguing outside the exam room door) who were adamant that I was too young for this procedure and too young to decide for myself if I did not want to have children. Since the IUD is rarely (at least in that office) given to women who have not had children (in the rare even that it could rupture my uterus and leave me unable to have the kids I don’t want), I had to sign a wavier that I knew what I was doing, knew what the risks were and wanted the IUD anyway.
Finally, on May 17, 2006, at the ripe old age of 29, I had the IUD inserted. That procedure and the following two weeks were far more painful than most of my periods, in part because I was never pregnant so my uterus was rebelling against being stretched out to have this thing inserted into it. There were even times of such agonizing pain that I rolled on the floor in the fetal position waiting for the massive doses of Tylenol to kick in while my partner looked on in helplessness (St. Marc did not prescribe any pain meds since he was falsely convinced that I would not be in that much pain).
However, despite the few weeks of intense pain, that Christmas I received the best gift I’ve had in decades…my last period. This December will mark three years without a period and the longest period of time I have ever been able to use any form of birth control without horrendous side effects. While the IUD and my former gynecologist have been blessings in my life, they were no cure. For a while though, I thought that the worst was behind me.
Then, five months after getting the IUD, (which, in all fairness, sometimes made my lower back feel achy) I fell down a flight of stairs outside our apartment while trying to take the laundry down the rain slicked stairs to the laundry room. I must have blacked out during the fall because when I “came to” I had no idea why I was lying on the cement ground in the rain. And yet, despite my aching everything, I forced myself to get up and start the laundry. Once that was going, I hauled myself up the three flights of stairs and called my mom for advice. Since nothing was broken she told me to ice what hurt and take some pain medicine. I didn’t go to the emergency room until two days later when I got a doctor’s appointment for the persistent pain. My doctor was the one who insisted that I go, despite the fact that the x-rays they took showed nothing abnormal was wrong. From that fall to this day, my lower back has never felt the same, despite plenty of pain killers and a few months of physical therapy.
Sometimes, over the past seemingly endless years, there were periods of respite from the pain, be it my lower back pain, the pain in my right ovary or the pain in my uterus, but always it came back. I don’t really know when the pain returned. In many ways it has always been there in one form or another and eventually the pain spread to other places in my body. However, once I left Chicago, I did not have health insurance, even when I was employed, so again I tried to force myself back into thinking the pain was all in my head.
Within the past year, the pain, in various forms, seems to have returned, usually out of know where…and generally when I am doing nothing more strenuous than standing still. And I cannot recall a time when it seemed to have such sudden onset and intensity. It was really starting to scare the hell out of me.
Even though I am currently unemployed and still do not have health insurance, the pain I am experiencing became so intense and so freaking scary, I finally sought medical help which I would have to pay for out of pocket. My gynecologist, a woman this time, was unable to figure out what was causing me such agony after all my routine medical tests came back “normal”. To her credit, she did not write me off or tell me, yet again, that it was in my head. Instead, she referred me to a Pelvic Pain Specialist, (one of the few in the country) who agreed to see me for hundreds of dollars less than he would normally charge. I took the first available slot and spent the next two months trying to convince myself to cancel this still very expensive appointment, because, you know, it was “all in my head.” But the pain throughout my body was telling that idea to fuck off.
I swear on my life this is true! At one point I paused for a moment and realized what I was doing hurt my feet, so I stopped just long enough to go back into my bedroom, put on shoes and commence jumping up and down on the tree again. Seriously, this might sound side-splittingly funny, but it is true. My sense of judgment while on Lupron was so skewed that I thought my reaction was perfectly normal and whats more, I couldn’t, I mean, could not stop myself despite the throbbing in my feet and the shards of broken ornaments everywhere. I couldn’t stop myself until I was so exhausted that I simply went back to bed, leaving the shattered tree on the floor until the following day.
Two weeks later, while stuck in traffic on Christmas Day, I literally pounded my head over and over on the steering wheel because I felt so hopeless and out of control, both because of being stuck in traffic and because I couldn’t control my body, my thoughts or my emotions any more. I don’t know if my sister, the only passenger in the car, was more scared for her life or mine.
The final straw for Lupron came about a month later, when, again stuck in traffic, I literally imagined what it would be like to kill the person in front of me. I mean I imagined getting out of my car, getting in to their car, putting my hands around their throat and squeezing the life-force out of them without any remorse…I could even feel in my hands what that would be like! It was one of the most horrible wake-up calls of my life and I had to stop taking the medicine because of the terror of my thoughts and what might happen if I stayed on it.
You may wonder why the hell I kept allowing myself to be a guinea pig to all these medical “treatments” and I often wonder that myself. But the heart of the truth is that even after my surgery and each new medical treatment, I kept feeling worse and worse each month and I just wanted the pain to go away. I just wanted to feel human. Instead I often felt like some grotesque blob that was being controlled by inexplicable bodily pains. I wanted so badly to believe that the next medical thing would cure me, and if it wouldn’t cure me, that at least it would give me some reprieve from the pain and the reassurance that this was not “all in my head."
A few years after the Lupron disaster, (as well as brief attempts to use the Nuva ring, which also didn’t work for me) I moved to Chicago. One of the few blessings to come out of living in Chicago was health insurance and a co-worker who referred me to a primary care doctor who had no idea what the hell was wrong with me. Instead of dismissing my pain, she was compassionate and humane enough to refer me to a new male gynecologist who did take me seriously.
St. Marc (as I will call him for this story) believed in me and in my pain. He also believed in my ability in my late 20’s to know for certain that I never wanted to have children. While he, like every doctor before him, refused to remove my ovaries or uterus, he did prescribe the Mirena IUD. He did this after carefully discussing with me what it was I wanted from my treatment and informing me that while I might like to have my ovaries and/or uterus removed, that likely wasn’t going to solve the problem. The IUD, however, should cause me to no longer have my period, which should quell the pain we believed was caused by the endometriosis (which flared up very month with my periods). Additionally, the Mirena doesn’t contain estrogen, which I cannot tolerate and should last for five years. I wanted that damn IUD more than a child wants to see Santa and a sack load of gifts on Christmas Eve!
In order to get the IUD, St. Marc had to battle his colleagues (I could hear them arguing outside the exam room door) who were adamant that I was too young for this procedure and too young to decide for myself if I did not want to have children. Since the IUD is rarely (at least in that office) given to women who have not had children (in the rare even that it could rupture my uterus and leave me unable to have the kids I don’t want), I had to sign a wavier that I knew what I was doing, knew what the risks were and wanted the IUD anyway.
Finally, on May 17, 2006, at the ripe old age of 29, I had the IUD inserted. That procedure and the following two weeks were far more painful than most of my periods, in part because I was never pregnant so my uterus was rebelling against being stretched out to have this thing inserted into it. There were even times of such agonizing pain that I rolled on the floor in the fetal position waiting for the massive doses of Tylenol to kick in while my partner looked on in helplessness (St. Marc did not prescribe any pain meds since he was falsely convinced that I would not be in that much pain).
However, despite the few weeks of intense pain, that Christmas I received the best gift I’ve had in decades…my last period. This December will mark three years without a period and the longest period of time I have ever been able to use any form of birth control without horrendous side effects. While the IUD and my former gynecologist have been blessings in my life, they were no cure. For a while though, I thought that the worst was behind me.
Then, five months after getting the IUD, (which, in all fairness, sometimes made my lower back feel achy) I fell down a flight of stairs outside our apartment while trying to take the laundry down the rain slicked stairs to the laundry room. I must have blacked out during the fall because when I “came to” I had no idea why I was lying on the cement ground in the rain. And yet, despite my aching everything, I forced myself to get up and start the laundry. Once that was going, I hauled myself up the three flights of stairs and called my mom for advice. Since nothing was broken she told me to ice what hurt and take some pain medicine. I didn’t go to the emergency room until two days later when I got a doctor’s appointment for the persistent pain. My doctor was the one who insisted that I go, despite the fact that the x-rays they took showed nothing abnormal was wrong. From that fall to this day, my lower back has never felt the same, despite plenty of pain killers and a few months of physical therapy.
Sometimes, over the past seemingly endless years, there were periods of respite from the pain, be it my lower back pain, the pain in my right ovary or the pain in my uterus, but always it came back. I don’t really know when the pain returned. In many ways it has always been there in one form or another and eventually the pain spread to other places in my body. However, once I left Chicago, I did not have health insurance, even when I was employed, so again I tried to force myself back into thinking the pain was all in my head.
Within the past year, the pain, in various forms, seems to have returned, usually out of know where…and generally when I am doing nothing more strenuous than standing still. And I cannot recall a time when it seemed to have such sudden onset and intensity. It was really starting to scare the hell out of me.
Even though I am currently unemployed and still do not have health insurance, the pain I am experiencing became so intense and so freaking scary, I finally sought medical help which I would have to pay for out of pocket. My gynecologist, a woman this time, was unable to figure out what was causing me such agony after all my routine medical tests came back “normal”. To her credit, she did not write me off or tell me, yet again, that it was in my head. Instead, she referred me to a Pelvic Pain Specialist, (one of the few in the country) who agreed to see me for hundreds of dollars less than he would normally charge. I took the first available slot and spent the next two months trying to convince myself to cancel this still very expensive appointment, because, you know, it was “all in my head.” But the pain throughout my body was telling that idea to fuck off.
Inexplicable Pain, Part 1
It has been almost a month since I’ve written and it hasn’t been because I don’t have anything to say, but because I am afraid to write what I have to say. Writing things makes things real. At least for me it does, and I have spent the better part of my life trying to believe that the now daily pain I feel is all in my head. And since it was all in my head, I saw no need to blog about it or even get help for it. That is, until the pain got so bad I just needed someone to cut something out of me. I needed someone to permanently remove whatever hideous and hellaciously angry part of me was causing so much pain that merely breathing sometimes exacerbated the problem.
Unfortunately, the doctor I finally went to see will not remove any of my angry organs. That bastard!
Over the course of the past fifteen years I have seen more doctors than I care count, to try and get answers about the stabbing pain on my right side. I remember exactly the day I first felt this pain. The summer before my junior year in high school I was 17 at cross country camp in New York with two of my friends. We were stretching before our run when out of nowhere came this searing pain in my right side. I doubled over in agony and was sent to the nurse who told me that I may have pulled something or maybe it was my appendix, we’d wait and see. While I was at camp the pain eventually subsided and was more or less forgotten about until the next month and the next month and the many, many months after that when it kept returning, always on my right side.
When the pain would return and when it would intensify, so too would the pain of my periods. Now, I don’t ever recall having “easy” periods since I started menstruating at 13, but they certainly became more painful with age, especially in college. It got to the point where I had such intense cramps I would curl up in a ball in bed all day, my tears as useless as the over-the-counter pain meds I tried furtively to numb myself with. Sometimes even without a period, I would get debilitating pain, again, always on my right side, which would come out of nowhere. I remember running through the woods one day in my early 20’s when a pain on my right side so fierce knocked me to the ground without any warning. All I could go was double over on the ground and wait for it to pass.
For over a decade since then, I’ve seen doctor after doctor, most of whom told me it was “in my head” or “the burden of being a woman” or “that’s just what happens when we menstruate” (which ALWAYS was said by a male doctor and left me wondering when the hell the last time he menstruated was!!). The few family members and friends I told about the pain over the years didn’t know what to do or they too told me it was all in my head, part of being a woman, nothing to worry my pretty little head about. Sometimes I believed them. Most times I didn’t but what the hell was I going to do? No one seemed to take me very seriously, especially since the pain would come and go, lessen and worsen, sometimes seem to disappear altogether for months or two at a time, only to return with a vengeance later on.
The doctor I was seeing at the time believed that my periods were the source of my “frustration” and prescribed birth control pills to get everything under control. My first negative experience with birth control pills occurred within the first few months of taking them. I was a freshman in college at the time and I was irregularly sexually active. A mere few months on the pill led to a weird tingling sensation on the left side of my face which appeared out of nowhere during a math exam. The tingling sensation spread down the left side of my face to my upper left arm until that went numb. From there the sensation slowly traveled down my lower left arm and eventually throughout the entire left side of my body to the point where I had trouble using my left hand, speaking, feeling my left foot or even thinking clearly. Finally, scared out of my mind, I had my sorta boyfriend take me to the emergency room. The ancient male doctor who finally saw me, without doing any medical exams, lectured me about how I was having symptoms of a stroke and how stupid could I be to keep taking these pills when they could, literally, kill me. I was too stunned and afraid to tell him why I was really taking these pills, although I did immediately stop taking them.
After that incident, other “more knowledgable” doctors and gynecologists prescribed different types of the pill which weren’t supposed to have the same side effects, and while it is true that I didn’t stay on them long enough to experience stroke-like side effects, I had a variety of other problems which caused me to go off them.
For awhile I relied on condoms, but I had problems with them too. It seemed like most (but not all) of the time when my partner used a condom I would get anything from a mild irritation in my vulva to a full out burning, acidic forest fire inside my vagina, the pain of which could last for a day or two. I discussed this once with my mom (yes, with my mom) and she suggested waiting until I was more aroused to have penetration and if that didn’t work, switching brands of condoms (I’d already tried quite a few and generally they all caused some negative reaction) and if that didn’t work, she suggested trying lube. No one ever suggested that I see a doctor about this (although given my past experiences, I doubt that it would have helped much anyway!). And anyway, condoms didn’t always cause such burning irritation, so when things were fine for awhile, I’d go back to telling myself what I was feeling was all in my head.
Once, while on charity care in New Jersey, (because even though I was working two jobs I didn’t make enough money to afford my own health care and neither job provided part time people with insurance) I sort of got a smattering of answers about my pain which refused to go away. The charity care doctor I saw initially told me that my pain “was part of being a woman” and saw no reason to pursue medical treatment. However when the nursing assistant tried to perform a routine gyn exam, I almost jumped off the table from the pain of her trying to insert the just the tip of her finger into my vagina. I fought back tears as she left the room, presumably to let the doctor know that something had to be done.
Reluctantly the doctor ordered an ultrasound to see what the hell might be wrong with me. He told me it might be an ovarian cyst or endometriosis, though he still seemed to think the tests were a waste of time and taxpayers’ money. Despite feeling that way, he did strongly suggest that if I have endometriosis, I really should consider getting pregnant because that would stop my periods (and presumably my problems) for at least 9 months…longer if I breast feed or had more kids. My highest paying job at the time was $6.50 an hour, never mind the fact that I never, ever want to have kids, and this was what the doctor thought was the best course of action for me?
The ultrasound revealed that I had a cyst on my right ovary (at least that wasn’t in my head!) and Doctor Charity Care begrudgingly consented to giving me a laparoscopy to remove the cyst.
Finally, on September 12, 2001, I had the first surgery of my life. The procedure revealed that the cyst on my right ovary had ruptured prior to surgery so that should not have been the cause of my current pain. It was also discovered that I had endometriosis; which I had suspected and attempted to discuss with the doctor when I first met him and he immediately dismissed. He told me they removed all the endometriosis they could see but since they weren’t expecting to find any in the first place, there was no way to tell, without further surgeries, if anything remained. At any rate, he “assured” me it would likely come back in a few years anyway, as long as I kept getting a period. Again he recommended the “cure” of pregnancy (which I later learned can often make endometriosis even worse!) as a means of “keeping the endometriosis at bay” since there is no cure for it.
Since I refused to get pregnant, this began years of failed treatments, increased pain, several new doctors and an increasing sense on my part that maybe this was really all in my head.
Over the years, when I was somewhat believed, doctors prescribed a plethora of birth control methods aimed at controlling my periods. I was on several types of birth control pills (both regular and progesterone only), even after the disaster I experienced in college because each new gyn “assured” me that this pill would not cause the same, or even similar side-effects. None of the pills worked for me since I appear to be unable to tolerate extra doses of estrogen.
From there I was prescribed “the patch”, which I thought was a miracle, since I had been able to use it longer than any form of birth control pills. That is, until the day I leaned over to pick something up off the floor of the nursing home where I was working and I felt an intense tightness in my chest followed by sharp shooting pains in my chest and down my left arm. Although I had tried to ignore the tightness in my chest that I was increasingly feeling on my drive into work that morning, even I wasn’t foolish enough to ignore these symptoms. My doctor diagnosed these symptoms as warning signs of a heart attack and ordered me to stop using the patch. I was twenty five at the time.
Unfortunately, the doctor I finally went to see will not remove any of my angry organs. That bastard!
Over the course of the past fifteen years I have seen more doctors than I care count, to try and get answers about the stabbing pain on my right side. I remember exactly the day I first felt this pain. The summer before my junior year in high school I was 17 at cross country camp in New York with two of my friends. We were stretching before our run when out of nowhere came this searing pain in my right side. I doubled over in agony and was sent to the nurse who told me that I may have pulled something or maybe it was my appendix, we’d wait and see. While I was at camp the pain eventually subsided and was more or less forgotten about until the next month and the next month and the many, many months after that when it kept returning, always on my right side.
When the pain would return and when it would intensify, so too would the pain of my periods. Now, I don’t ever recall having “easy” periods since I started menstruating at 13, but they certainly became more painful with age, especially in college. It got to the point where I had such intense cramps I would curl up in a ball in bed all day, my tears as useless as the over-the-counter pain meds I tried furtively to numb myself with. Sometimes even without a period, I would get debilitating pain, again, always on my right side, which would come out of nowhere. I remember running through the woods one day in my early 20’s when a pain on my right side so fierce knocked me to the ground without any warning. All I could go was double over on the ground and wait for it to pass.
For over a decade since then, I’ve seen doctor after doctor, most of whom told me it was “in my head” or “the burden of being a woman” or “that’s just what happens when we menstruate” (which ALWAYS was said by a male doctor and left me wondering when the hell the last time he menstruated was!!). The few family members and friends I told about the pain over the years didn’t know what to do or they too told me it was all in my head, part of being a woman, nothing to worry my pretty little head about. Sometimes I believed them. Most times I didn’t but what the hell was I going to do? No one seemed to take me very seriously, especially since the pain would come and go, lessen and worsen, sometimes seem to disappear altogether for months or two at a time, only to return with a vengeance later on.
The doctor I was seeing at the time believed that my periods were the source of my “frustration” and prescribed birth control pills to get everything under control. My first negative experience with birth control pills occurred within the first few months of taking them. I was a freshman in college at the time and I was irregularly sexually active. A mere few months on the pill led to a weird tingling sensation on the left side of my face which appeared out of nowhere during a math exam. The tingling sensation spread down the left side of my face to my upper left arm until that went numb. From there the sensation slowly traveled down my lower left arm and eventually throughout the entire left side of my body to the point where I had trouble using my left hand, speaking, feeling my left foot or even thinking clearly. Finally, scared out of my mind, I had my sorta boyfriend take me to the emergency room. The ancient male doctor who finally saw me, without doing any medical exams, lectured me about how I was having symptoms of a stroke and how stupid could I be to keep taking these pills when they could, literally, kill me. I was too stunned and afraid to tell him why I was really taking these pills, although I did immediately stop taking them.
After that incident, other “more knowledgable” doctors and gynecologists prescribed different types of the pill which weren’t supposed to have the same side effects, and while it is true that I didn’t stay on them long enough to experience stroke-like side effects, I had a variety of other problems which caused me to go off them.
For awhile I relied on condoms, but I had problems with them too. It seemed like most (but not all) of the time when my partner used a condom I would get anything from a mild irritation in my vulva to a full out burning, acidic forest fire inside my vagina, the pain of which could last for a day or two. I discussed this once with my mom (yes, with my mom) and she suggested waiting until I was more aroused to have penetration and if that didn’t work, switching brands of condoms (I’d already tried quite a few and generally they all caused some negative reaction) and if that didn’t work, she suggested trying lube. No one ever suggested that I see a doctor about this (although given my past experiences, I doubt that it would have helped much anyway!). And anyway, condoms didn’t always cause such burning irritation, so when things were fine for awhile, I’d go back to telling myself what I was feeling was all in my head.
Once, while on charity care in New Jersey, (because even though I was working two jobs I didn’t make enough money to afford my own health care and neither job provided part time people with insurance) I sort of got a smattering of answers about my pain which refused to go away. The charity care doctor I saw initially told me that my pain “was part of being a woman” and saw no reason to pursue medical treatment. However when the nursing assistant tried to perform a routine gyn exam, I almost jumped off the table from the pain of her trying to insert the just the tip of her finger into my vagina. I fought back tears as she left the room, presumably to let the doctor know that something had to be done.
Reluctantly the doctor ordered an ultrasound to see what the hell might be wrong with me. He told me it might be an ovarian cyst or endometriosis, though he still seemed to think the tests were a waste of time and taxpayers’ money. Despite feeling that way, he did strongly suggest that if I have endometriosis, I really should consider getting pregnant because that would stop my periods (and presumably my problems) for at least 9 months…longer if I breast feed or had more kids. My highest paying job at the time was $6.50 an hour, never mind the fact that I never, ever want to have kids, and this was what the doctor thought was the best course of action for me?
The ultrasound revealed that I had a cyst on my right ovary (at least that wasn’t in my head!) and Doctor Charity Care begrudgingly consented to giving me a laparoscopy to remove the cyst.
Finally, on September 12, 2001, I had the first surgery of my life. The procedure revealed that the cyst on my right ovary had ruptured prior to surgery so that should not have been the cause of my current pain. It was also discovered that I had endometriosis; which I had suspected and attempted to discuss with the doctor when I first met him and he immediately dismissed. He told me they removed all the endometriosis they could see but since they weren’t expecting to find any in the first place, there was no way to tell, without further surgeries, if anything remained. At any rate, he “assured” me it would likely come back in a few years anyway, as long as I kept getting a period. Again he recommended the “cure” of pregnancy (which I later learned can often make endometriosis even worse!) as a means of “keeping the endometriosis at bay” since there is no cure for it.
Since I refused to get pregnant, this began years of failed treatments, increased pain, several new doctors and an increasing sense on my part that maybe this was really all in my head.
Over the years, when I was somewhat believed, doctors prescribed a plethora of birth control methods aimed at controlling my periods. I was on several types of birth control pills (both regular and progesterone only), even after the disaster I experienced in college because each new gyn “assured” me that this pill would not cause the same, or even similar side-effects. None of the pills worked for me since I appear to be unable to tolerate extra doses of estrogen.
From there I was prescribed “the patch”, which I thought was a miracle, since I had been able to use it longer than any form of birth control pills. That is, until the day I leaned over to pick something up off the floor of the nursing home where I was working and I felt an intense tightness in my chest followed by sharp shooting pains in my chest and down my left arm. Although I had tried to ignore the tightness in my chest that I was increasingly feeling on my drive into work that morning, even I wasn’t foolish enough to ignore these symptoms. My doctor diagnosed these symptoms as warning signs of a heart attack and ordered me to stop using the patch. I was twenty five at the time.
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