Secret Relations

When I first went to my current OB/GYN, I decided that "This is it. I'm going to get some answers today." Hopeful and somewhat optimistic, I prepared myself to relay my story from start to finish. That I had had pelvic pain on and off for about 5 years. That I had heavy bleeding during menstruation, cyclical depression, and often had to take off work or school. That I had a history of ovarian cysts. That I was thought to have endometriosis, but the doctor who performed my exploratory laparoscopy said to me after surgery: "I don't really know what I saw in there." Say what? "Short of doing an autopsy," he continued, "we may never know what is causing your pain. It could be microscopic and hidden within your muscle tissue." Are you freaking kidding me?

So there I was: fleeing from Dr. "I Don't Know" to someone better, someone who could help me, listen to me. I talked myself up, put on my big girl panties and began: "I've come to you today because I need someone to listen to me," and I continued on to tell my story. On that day, my doctor assured me that he would help me treat my symptoms and figure out what was causing me so much pain and discomfort. We began by a series of hormone treatment, as I recall, in the form of birth control pills. I have to admit that I was not the best at taking pills, and I'd often miss my doses. So clearly this was not the best option for me, and I own that responsibility as a patient; I didn't do the best to be proactive at this point. We decided, then, that perhaps a more aggressive form of therapy would be required to minimize my symptoms and pelvic pain. My doctor suggested Depo Lupron injections, which would last for a duration of three months for each dose. The first dose was given, and I had been prescribed hormones to accompany the injection to reduce the side effects. For the most part, this worked. For the second dose, I was not prescribed hormones, and I figured that this was supposed to be part of my therapy. However, I found out much later that having the hormone "replacement" was essential, and of course I suffered the nasty menopausal side effects of Lupron.

Okay, so fast forward to the end of my Lupron therapy. I was SO happy to be done with it! I would say that it was, for the most part, an effective form of therapy, and I would recommend to at least try it if you haven't considered it. Apparently it can be expensive, but I was lucky that my health insurance covered the expense. Despite my experience with Lupron, however, my symptoms did not cease. In fact, they became worse. Instead of continuing Lupron, I had been prescribed the NuvaRing (I love the NuvaRing!) to keep me from ovulating. Unfortunately, this hasn't been enough to stop the endo pain.

It seemed like things went from bad to worse, and as I sit here at this very moment, I feel the gnawing, sometimes stabbing, pain in my lower right abdomen that makes me want to throw up if I don't try to concentrate on other tasks. Like writing. Anywho, I went back to Dr. N (my current, general OB/GYN) and mentioned that I felt worse than ever before.

It was then that he asked me: "Jessica, are you having secret relations?"

Are you fucking kidding me?! I laughed it off at first, but then became angry at the insinuation that I had contracted an STD from a "secret affair." Are you fucking kidding me? was all I thought as sat there, bewildered, for I had come to Dr. N in the first place for these very same symptoms. Is it so hard to believe that my endo would come back? Is it beyond the scope of reality to believe that I'm not just making this shit up?

If there are secrets to be had, I was holding back all of the bouts of pain that nearly left me incapable of moving from my bed to the toilet to throw up. The memories of doubling over from sharp, stabbing pain faded as his gloved hands slid between my legs to feel my broken insides. "Your ovaries seem fine," he said.

DIAGNOSIS

If you've done the research, you'll see a vast array of "diagnostic" recommendations for endo. And I have to say that more often than not, medical journals reveal that proper diagnostic tools pretty much require a laparoscopy (see Engamise, et. al.). If you do the fifty cent tour of Endometriosis via WebMD or even the Mayo Clinic, you'll find that they recommend non-invasive forms of diagnostic tools like transvaginal ultrasounds (but let's be honest: TVU's can be painful!). Let me be clear, here: any doctor who wants to just jump right into your Pamela Beard (my pseudonym for my uterus) via surgery is probably not doing you any favors. You should be checked first by non-invasive methods like abdominal ultrasounds, X-rays, abdominal palpitations, and MRIs for example. But even then these tests may not reveal the extent of your endo growth. Additionally, it appears that doctors should want to limit your exposure to potentially harmful side effects of radiation via non-invasive diagnostic technology (Busard et. al. 2011). However, in some instances of severe endo growth in the bowel, MR imaging may be helpful. Moral of the story: some one should be paying attention to your symptoms, to your story, and guiding you through the process of discovery.

I had gone from Dr. "I Don't Know" to Dr. N (my regular OB/GYN) who told me that my last option for therapy was to get pregnant ASAP. I had come to him for hope, and now I felt like I was being scolded for wasting my femininity on stuff like education and a career. After 2 years of being his patient, however, Dr. N did not at least offer to perform a diagnostic laparoscopy to make sure that the pain was coming from endo. It was at that moment when I realized that if I wanted answers, I'd have to look somewhere else. I had no choice but to ask my family doctor for a referral to a specialist who offered me a diagnostic laparoscopy to "start over" from scratch.

As you will see in Engamise's article, the typical delay in diagnosis is 7-8 years. For 7 years, I have been wondering why it hurt so bad to poop and pee. Finally I have an answer.

My surgery is scheduled for August 2nd and I have to admit: I'm scared. I'm scared that even after (finally) having some closure, the lap report will come back "negative" for endometriosis and all these years I've been pretending to be in pain. I guess that's another secret symptom of endometriosis: you'll always question yourself because, after all, you're no medical expert.

You're just an expert on being yourself.