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.