My name is Jessica, and I'm not going to shut up anymore.

Monday, July 2, 2012

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.


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.

Crocodile Tears

I have to write to you because you are NOT alone if you are like me.

I've been suffering from the symptoms of endometriosis for years.

I say "symptoms" because until last week, no one had told me, definitively, that my corporeal enemy was, in fact, endometriosis. Until last week, I was crazy.

For the last few months, it has become an every day struggle to "keep it real" and do my job, be a wife, make plans with friends, etc. My life has significantly changed, and since December 2011, I've never felt more isolated in my entire life.

After many months in 2011 with hormone therapy (that simulates menopause--yes, I was 28 and having hot flashes), I felt like I had exhausted my options. I had decided that Lupron injections did not suit my body and my needs. In fact, throughout the better part of a year, I felt like I was dead, like I was a person functioning in the shell of a body which used to be Jess. To be clear, from December 2010 until August 2011, I was given injections of Depo Lupron, a hormone which simulates menopause and shuts down your baby factory. For some folks, this therapy works great. For others, it is accompanied by horrible side effects, including hot flashes, night sweats, migraines, loss of sex drive, weight gain, fatigue and depression. This is the part where I mention that I had ALL of these side effects. In short: it was hell.

With Lupron seemingly off the table of options, my OB/GYN told me that my best choice of therapy was to get pregnant, like, RIGHT NOW. For those of you who know me, I am a hard core believer in (women's) rights to make your own life decisions, to devote your attention to your profession, your education, to raise children, etc. But it's MY choice. Not my doctor's. The day my doctor told me that I needed to have a baby or "get off the pot," I cried right there on the examination table. I felt judged and belittled. I felt like my body was viewed as a mere vessel of reproduction rather than a human being. I wanted to tell my doctor: "Hey, wait a second, buddy. I'm a young professional, graduate student, aspiring writer who happens to also have female anatomy." But I couldn't say anything. Instead I just sat there, silent. And cried.

Until last week, I had seen a myriad of doctors and been treated for a series of things: IBS, nerve entrapment, pelvic myalgia, lower back pain and sciatica, to name a few. Yet no one was able to put the pieces together. A few weeks ago, during a bout of pain and a dreaded trip to the ER, I was all but treated like a drug addict when the nurse looked at my chart. "You were given percocet 6 weeks ago by your family doctor. You should still have some left." Through tears, I replied, "But I don't. I had an ovarian cyst the size of my fist. I was taking 5 pills a day just to make it through." She was not impressed: "Well, I can tell you this right now, you're not getting any percocet from me today." Thanks, lady. Also, I so very much enjoy taking trips to the ER and appreciate paying the $100 for care you refuse to give me.

Until last week, I thought I was crazy. I stopped expressing my concern for my symptoms, tried arduously to maintain normalcy in my life and pretty much gave up all hope that I would ever feel "normal" again. Instead of being proactive, I felt ashamed to even have medical problems. All I ever heard from doctors was, "You're a healthy 26,27,28,29 year old. You shouldn't be having pain like this." Well, to be frank: Fuck you.
I am. So there.

When you look up the symptoms of endometriosis online, you might find a list that looks like this:
  • Painful periods (dysmenorrhea). Pelvic pain and cramping may begin before and extend several days into your period and may include lower back and abdominal pain.
  • Pain with intercourse. Pain during or after sex is common with endometriosis.
  • Pain with bowel movements or urination. You're most likely to experience these symptoms during your period.
  • Excessive bleeding. You may experience occasional heavy periods (menorrhagia) or bleeding between periods (menometrorrhagia).
  • Infertility. Endometriosis is first diagnosed in some women who are seeking treatment for infertility.
  • Other symptoms. You may also experience fatigue, diarrhea, constipation, bloating or nausea, especially during menstrual periods.
 What you won't find under the list of symptoms is this:
  • Shame. A feeling you may have when your life decisions are questioned by medical practitioners.
  • Guilt. For all the times you've taken off work, RSVP'd "no" to a social invite, neglected your chores around the house, said "no" to your spouse when they want to have sex because you're afraid it might hurt.
  • Fear. That every time you start to feel the pain creeping throughout your insides, sense the cramping, gnawing, throbbing pain radiate throughout your lower abdomen, you'll need to take a trip to the ER. Because, when you get there, all they'll do is tell you you're not dying and send you home.
  • Stupidity. Because even though it's your body and you know what's normal for you, someone else believes you have IBS or nerve entrapment. They don't care about putting the puzzle pieces together; they just want to solve your symptoms piece meal. Besides, it's easier to put a bandaid over problems than get to the root of them.
  • Lunacy. You're healthy. No way you can be in this much pain. You're not getting pain meds today; don't you know they can be potentially addictive even though you are responsible at managing your pain with them? You can't be trusted to have a prescription; you're just a silly girl with silly girl problems. Go back home and remember to throw that load of laundry in the dryer.
  • Abandonment. When your doctor decides that he or she can no longer treat you because either they're not experts or that they've done everything they can to help you. It's out of their hands now.
  • Other symptoms. Like realizing your life has been drastically changed by a condition that was not your choice to have in the first place.
Obviously, there are many other sentiments and experiences that occur when you have endometriosis that I haven't listed here. Every woman's story is different--which is actually what my new (and WONDERFUL) OB/GYN specialist made very clear to me last Tuesday. He said, "Every woman has the right to know her own story. It seems to me that you don't even fully know yours." He's right. No one has ever said, "Jessica, you have endometriosis." I've heard a variety of "It sounds like it could be endometriosis." Or, "We're probably dealing with endometriosis, here. But I'm not really sure." After just talking to me (no examination required!) Dr. Harkins told me, "Jessica, it's clear that this is endometriosis." Eureka!

Wow. What an incredible perspective. Throughout my journey, I had noted the oppressive nature of medicine whereas your doctor is the gatekeeper of knowledge, and you're literally at the mercy of their expertise, waiting for their medical know-how to rescue you from an ocean of ignorance. But Dr. Harkins (Penn State Hershey) is different; he wants me to know what's going on in my body. He wants to educate me about my condition. He gave me the ability to choose some options: "We can choose from various options or we can start over again."

So I said: "Let's start all over again." And I started to cry. Tears of hope this time.