Finally Seeing the Pelvic Pain Specialist

As trite as it may sound, Wednesday, October 21st 2009 will remain a day that changed my life and I’m still not sure how I feel about that. I was pretty good and pissed off before I ever even saw the doctor. I mean, having to wait almost an hour on uncomfortable chairs when you are already in pain with not much else to distract you but articles about pelvic pain and a giant bloody picture of some gross baby being delivered is not my idea of fun even if I was feeling well! When Kris, the Medical Technician finally came to get me, I did not conceal my annoyance at having to wait so long (something I later regretted doing). She told me, as I was sitting on the equally uncomfortable gyno exam table, that Dr. E. tries to take as much time as each patient needs and sometimes that causes him to run late. Since I was still bitterly convinced he wasn’t going to believe me, this reasoning offered me little consolation.

I was still fuming as Kris and I went over the huge packet of information I filled out prior to my visit. This packet was at least 15 pages long and asked questions about damn near everything in my life, from how often I pee to what I eat, to how satisfied I am with my life, to what kind of pain I was feeling and where and what kinds of recreational drugs I’ve used. It was the most extensive pre-exam paper work I have ever filled out and still I was certain that I was not going to be believed in this place. For Christ’s sake, they deliver babies, what the hell do they know about the pain my childfree body is experiencing? Turns out they know a lot. Too much even.
After Kris finished asking me tons of follow-up questions, she went to get the doctor as I sat, in growing agony, on my horrendously sore bum. As I l waited for the doctor, it occurred to me, in a sad sort of way, how I was determined to see the doctor for the pain in my right ovary and nothing else…not the fierce pain between my legs or my constantly aching lower back or my overactive bladder, and I had no idea why the ridiculously long intake forms even asked about those things.

When the doctor walked in the room, he shook my hand, introduced himself and asked if I preferred to be called Elizabeth or Liz. So far things were going ok. Then, without taking his eyes off my face, he told me that I was safe here and that I was believed, that these things were not in my head. I was stunned. I was relieved. I was terrified and I wanted to get the hell out of the room as fast as I could, because even when a man who looks a hell-of-a lot like Santa Claus tells you that your medical problems are real, it can be a very jarring experience. And, as if being believed before he asked me any questions wasn’t jarring enough, he, with very sad looking eyes, apologized for all the other doctors I saw over the endless years before him and their inability or unwillingness to correctly diagnose me.

I was now more confused than ever! I mean, I guess I was being believed but he hadn’t even examined me yet, and why was he so sad that no one else believed me? I wouldn’t be here if they had!

For the next two and a half hours (yes, you read that correctly, my appointment with him lasted two and a half hours…and that was just the part with HIM!) Doctor E. asked me even more questions about my life and my pain and gave me so much information my head is still reeling, three weeks later. He started with a lengthy differentiation between acute pain (which is immediate and short term) and chronic pain (which is long-term, 3 months or more and generally your body’s way of trying to protect itself from injuries that have ended. In other words, chronic pain shouldn’t be happening but, for a myriad of reasons, it does.). He took pains to make sure I understood what he was saying, which I did until all the other information started flowing, and then began the internal exam.

The internal exam was like nothing I have ever experienced. While there was the uncomfortable gyno table, the crappy paper “blanket” and yourself spread eagle in the ridiculous stirrups, there was no speculum, no “hurry up and get through this” attitude from the doctor and Kris was in the room with me the entire time, taking more notes than I ever took in grad school!

Dr. E. told me he would be talking to me every step of the way and explaining what he would be doing before he did anything. He began the exam with what looked like a toothpick and told me it was a sensitivity test. He touched a variety of places on the inside of my thighs and buttocks, some of which I could feel in ways that made my skin crawl with an itchy, electrical sensation and other places I didn’t feel at all. He then used a Q-tip to examine the inner and outer labia and check my vulva for sensitivity. Again, there were places where he touched me that I could feel and places I could not. What I could feel was a horrendous itching, burning sensation when he touched the Q-tip near the vaginal opening. The entire time he was talking to me, asking me questions about how things felt and almost nothing felt anything less than uncomfortable. Most things felt somewhere between painful and excruciating.

Dr. E. did an abbreviated internal exam which revealed all sorts of pain I thought was normal. Although he was so gentle and slow moving during the entire exam, I couldn’t understand why barely inserting a finger into my vagina made my vulva burn and itch with rage, my vagina recoil and that odd spot he touched inside my vagina throb with pain and a terrific need to urinate. Everything he was doing was a whole lot more gentle than sex or masturbation, so why the fuck did it hurt so much? Why couldn’t I stop my inner thighs from uncontrollably convulsing?

I mean, when I wasn’t deeply entrenched in denial, I could sorta allow myself to think about why these areas would hurt during sex or masturbation but I couldn’t figure out why everything bothered me so much now; especially when he showed me by touching my hand, how gently he was performing my internal exam. I was definitely not having a good time!

Throughout the exam, he tried his best to convince me that all the things I had been feeling, or in some cases, not feeling, were not normal, were causing me harm and are very much worthy of medical attention. While I wanted to believe him, I also really just wanted him to cut out the offending ovary so I could get on with my life. He refused to do that because, despite what other doctors have told me, the pain I came in for was not in my ovary. Hell, your ovaries aren’t even located where I feel the stabbing pain! Who knew? I sure didn’t!

He did agree, based upon what I was telling him, that I probably have endometriosis (which is invisible without surgery) and that was causing some of my pain, but not most of it. At this point I became baffled and angry. I was diagnosed with endometriosis in 2001 and in a peculiar way, this diagnosis had become something to cling to as a source of my pain and problems, even if it never got better with various “treatments.” Now, with Dr. E. telling me that the endometriosis was only a small part, at best, in what was going on, I didn’t know what the hell to do or believe.

After delivering that stunning bit of news, he then proceeded to tell me all sorts of things which challenged my long held beliefs and all-too-often ignored pain. He told me: it isn’t normal to feel as though your rectum is being ripped to shreds when you have a bowel movement. I protested that I only felt that way sometimes…like once or twice a month…but he still said that wasn’t normal and any amount of blood in or near the rectum is BAD. It isn’t normal to be able to feel stabbing, twisting, fireworks in my brain, pain when my vagina is penetrated. Again, I protested that I only felt that way sometimes and in some sexual positions. He still insisted feeling that way sometimes was too often. Apparently it is not normal to have a perineum that is chronically so inflamed and painful that it hurts to sit, wear pants or even some days, underwear, because of the constant feeling of extra coarse sandpaper lacerating its way between my thighs. Nor is it normal to feel as though your perineum is so engorged that you have to heave it off the ground before you can even put your underwear on. I’m being metaphorical here. My perineum never actually dragged on the ground but inexplicably, for days at a time and without obvious warning, it would get so swollen that it felt as it was an extra, protruding appendage. And finally, it is not normal to have to pee an average of 20 times a day, or to have trouble starting your urine flow, or to produce anywhere from a trickle to 3 or 4 ounces of urine each time you pee!

Who knew these things were not normal? I thought most of them were. For even as open-minded as I think I am, I’ve never discussed bowel movements or the swelling of my perineum or my painful bladder with my friends. And after not being believed for so long about the chronic stabbing pain in my right side, I stopped talking about most pain with my family members and any medical personal. Besides, I wasn’t there to discuss those things. I was there to have my ovary removed, even if it wasn’t the cause of all my suffering.

When Dr. E. began pointing out or poking at problems and other sources of pain that had been my companions for so long, I didn’t know what to do. Fortunately shock set in and kept me from sobbing my formerly not believed mind out.