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.

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.