Triggers

For almost a year, you suffer from chronic pain. And then you have surgery. You heal. You feel better. You aren’t in pain every day. So…what now?

It might seem like a strange question to ask: what do after the pain subsides, the constant nausea goes away and you don’t wake up 6 times to pee in a night? About three months after surgery, I realized that my life had significantly changed—again. This time, however, the change was for the better. But I had to transition into a healing phase, and that was also somewhat challenging. For example, over quite a few months, I had all but isolated myself from socializing outside of my nuclear family or work. I have to admit that it was kind of weird to start making social plans again, to have an alcoholic beverage or stay up later than 10 p.m.! I thought: “Shit, I wasn’t just sick. I’ve aged about 10 years!” While I was elated to be able to have more flexibility in my life, more mobility, my body had to adjust to being active again. This, however, is a great problem to have.

I still wonder, too, if my pain will return. Most recently, after months of feeling pretty great, I had forgotten to change over my Nuva Ring. Without getting into too many details, I began menstruating again—something my doctor recommended that I try my best to avoid. I thought: Oh well. No big deal.  I mean, I’d felt great for so long that I’d forgotten what it meant to have abdominal pain.

Big mistake. Almost immediately, the pain returned. I caught myself clutching my lower abdomen again—a habit I had acquired pre-surgery. It. Fucking. Hurt. Suddenly the fear had returned: What if I need to go to the Emergency Room! I don’t want to see that bitchy nurse! Yes, these are the exact concerns that ran through my head. They’re gonna think I’m crazy again! No—you’re not crazy. You’re just lazy.

Luckily, this bout of pain only lasted a few days. At some points—mainly when I was stressing out—I felt the sudden, sharp pangs shoot through my insides. And then there were moments after I’d eaten something I shouldn’t eat (like Wege Party Sticks—like nectar of the gods), I’d start to get the creeping, burning sensation in my lower abdomen. And finally, I noticed that my bathroom habits were way off. Cue the small bladder syndrome. Cue the need for Miralax in my life.

Over the past few months, I’ve been trying to pay attention to my “triggers.” Your triggers are things that do two, basic things: 1) facilitate inflammation and 2) activate pain. This is why it’s very important not only to follow the habitude of constant and consistent birth control, but also to forego certain foods or beverages. Your doctor should be recommending that you take birth control without skipping the week or taking the placebo pills—just go right into the next packet. Or, like me, change Nuva Rings after 3-4 weeks before menstruation. I didn’t know that being amenorrheic was such a crucial part of decreasing the likelihood of endometrial tissue growth. Basically, amenorrhea prevents uterine lining from shedding, re-growing, and shedding again. The growth cycle is stunted, thus, less chances that the endometrial tissue is growing in the abdominal cavity. Additionally, menorrhea causes the lower abdominal cavity to become inflamed. So whatever is growing in there that shouldn’t be will also cause pain and discomfort in your abdomen, as well as interrupt your normal bowel or urinary functions. Again, to echo Dr. Harkins, “it’s all connected.”

For women who are thinking about looking into the “endo diet,” which, I’ve found, is basically like eating a gluten-free diet which also limits fried foods and cheese (foods with high fat content), I strongly recommend trying it out. I admit that I don’t follow it to a “T.” I have drastically limited my intake of grains, mainly processed grains like white bread and pastas. Sure there are times when I indulge—I’m human! But knowing what I should eat helps me understand my body’s reaction to when I eat what I shouldn’t eat. In other words, if I make a solid effort to eat only the foods which I know will help decrease inflammation (like leafy greens, melon, or anti-oxidant rich berries and other fresh foods), I can actually feel the difference. So when I make a choice to eat that slice of cake or munch on those ever-so-delicious pretzel sticks, I can actually feel my body reacting (negatively) to these foods. I feel a twinge of pain in my side. I sense a bit of nausea. Almost like my body is rejecting those foods! *Shakes her head* Of course, that doesn’t prevent me from resisting desserts. Or Wege Party Sticks. So instead of denying myself foods that I love, I simply limit my intake.

In addition to certain foods, I’ve noticed that alcohol induces pain—especially beer. I know! No beer?! Yes, folks. I have pretty much given up beer. And I’m actually ok with it. I guess after you give up a certain beverage for a while, it’s not so bad. Also, I can’t really hold my liquor any more (another reason why it’s challenging to socialize with folks my age because we want to meet up in bars “for a drink!”), so I’ve found myself drinking much less.

Finally, I will simply say that if you feel as though you might be suffering the pains of endometriosis or have already been diagnosed, lifestyle changes are inevitable. Changing your diet is effective, as well as hormone therapy. While not everyone’s body is the same, sometimes it helps to know that small remedies make a big difference no matter who you are.

I heart percocet.

Oh yes I did.

I did say it: I love Percocet.

But before visions of Lindsay Lohan in rehab start swirling in your head, please let me explain why I heart this controversial, potentially-addictive, prescription pain medication.

I’ve been so excited to write this post. Partly because it’s controversial and partly because I’m mad. I’m mad because people like myself who suffer from chronic pain from legitimate health conditions are constantly treated like drug addicts. You see, here’s how I explain my experience with chronic pain:

First, it can be debilitating to the point where you can’t focus, can’t do your job, can’t function at all like a normal human being. And secondly, often times the onset of more moderate pain only leads to more severe pain. Which makes people like myself freak out when we start feeling those sharp pangs of pain; automatically I start worrying that I’ll end up in the ER later. If I am fortunate enough to have a prescription on-hand and if I’ve tried every other  OTC drug I can think of, then I take a pill. A (singular) pill. And typically, if the pain is bad enough, Percocet allows for me to be able to function, to re-join society. I liken it to feeling like negative 10 (-10). I liken the “high” like going for the positive 10 (+10) effect, which is not what I’m trying to achieve. Taking a pill when I’m in so much pain brings me back to zero, to a neutral position. The goal, for me, is not to take it for the high, but to take it for relief. To get back to neutrality. To function.

Which is why I love prescriptions of Percocet; they help me regulate severe (note: I did not say mild or moderate pain) bouts of pain that I cannot control by other means of prescription medication or pain management skills. The down side is, we’re told every day that opiates cause addiction. That I will become addicted to taking Percocet and I’m not to be trusted to take the drug responsibly. That I'm a social deviant because I know that percocet works for me, and I ask for it. Also, I'm allergic to Hydrocodone (Vidcodin), so I often times have to skip levels of pain medication and go right for the big Kahuna--my beloved Perkies. When I do this, I am often met with looks of disbelief and automatic questioning: "What do you mean you're allergic? What happens to you when you take Vicodin?" It makes me feel worse. And Percocet makes me feel better.

Please note that I completely understand why it's important to be wary of opiates. I’ve had family members and friends who have struggled with addition to prescription pain killers, and IT'S NO JOKE.  It’s a serious problem. You can lose your job. Lose your home. Lose custody of your children. Take your own life. The dark side of pain killers, when abused, can cause various health issues and, in some cases, can actually incite chronic pain which is why many doctors are hesitant to prescribe pain medication specifically for patients who exhibit only symptoms of chronic pain with no acute signs of disease. I, too, agree with medical practitioners who believe it best to treat chronic pain with non-addictive pain medications and ONLY using Percocet when all other options have been exhausted.

But we’re not all addicts. No. We're not. All. Addicts.

I love Percocet because it helps me come out of a pain coma. I love Percocet because it's cheaper to take one pill than to pay a $100 co-pay at the hospital. I love Percocet because I don’t like the side effects when it does make me feel a little loopy. (I prefer to be lucid, sharp, engaged.)

On a side note, I am addicted to Honey Nut Cheerios, carbonated water, and Dunkin Donuts coffee.

After almost a year of being prescribed this medication on-and-off, I’ve been able to regulate the exact dosage, take it only when needed, and resist taking it when I don’t need it. Currently my Dr. and I found that if I take Tramadol HCL (50 mg) for break-through pain 1x/day with 2 Aleve, this regimen works like a charm. But the dark underbelly of this story is the fact that I did often need to take Percocet for a prolonged period of time due to chronic pain and a large ovarian cyst. And when you have chronic pain like this, you begin to feel like you want to crawl out of your skin. It’s horrible! A lot of times it hurt so bad, I could hardly breathe. It hurt to breathe! And the part that I don't want to admit is that I did undergo the side effects of withdrawal when the bouts of pain subsided. But I didn't ask for more meds when I didn't need them. I didn't say "yes" when my Dr. offered to write me a refill.

Does having side effects after medicating myself for a month make me an addict? Does this make me a deviant because I stopped taking meds because my pain went away and I, in turn, came down with a terrible migraine and nausea? Was the headache and nausea from the endometriosis? I will never know.


But what I do know is that pain medication helped me. It helped me regain some control over my body which had been besieged by a disease that I could not control.

And for that, I love Percocet. Today, tomorrow, and forever.

Lost and Found: An Update

It's amazing that I suffered for so long not knowing, exactly, what was wrong with my body. It's equally amazing that in a few, short months I found a new physician, had surgery, had a definitive diagnosis, a laparoscopy, excision, and post-op counseling offering me a holistic view of the body as it heals from endometriosis.

To give an update (a happy update!), on August 2nd, I underwent a successful laparoscopy procedure, as well as a successful excision of the endometrial tissue. Because I'm not a doctor, I probably can't properly relay all of the medical details surrounding the excision process, but I can give a few remarks about my condition.

First, remember those endometriosis photos that you looked up on Google? (see above) Notice how the endometriosis is dark red, spotty, and clearly visible? Ok. Let's just say that mine looked nothing like this. In fact, most of the endometrial tissue that had clung to my organs and pelvic wall was white--like a plaque. My doctor pointed out that this kind of endometrial growth was, in fact, rather common but that pictures often represent endometriosis as being dark red and bloody, like a blood clot. I'll try to get some of my photos from the Dr's office so I can post them on this blog for further review. I eventually want to also post the details from his full report.

Secondly, he also discovered that I had 2 lesions on the back abdominal wall covering the uterus, as well as a site of adhesions where my own tissue had attacked itself due to inflammation. You see, when your body produces a foreign tissue in places that it's not "welcome," your body will attack it. This causes the tissue to be attacked, and thus, "dissolved." On one site of my pelvic ligaments, there was a horseshoe shaped spot that had been "hollowed-out" due to inflammation. Crazy! My doctor also mentioned that, to some physicians, this would appear as "normal" anatomy. However, he made a point to say that the apparent lack of tissue was not normal and was a classic sign of endometriosis.

Additionally, I wanted to remark about my personal issues associated with having endometriosis. And by "personal" I mean my peeing and pooping habits. No one ever talks about peeing and pooping--unless, of course, you're 8 years old. But as an adult, I thought it was normal that I had severe constipation at times (which is why I had a partially blocked bowel back in Dec 2011!) and I pee up to 30+ times a day. I know that peeing excessively was not normal, but I didn't have any reason to suspect frequent urination was caused by endometriosis. News flash: IT IS! So is constipation! Let me explain:

From what Dr. Harkins told me, your uterus, bladder & colon are all connected by your parasympathetic nervous system. When a woman with endometriosis has her period, the uterus and surrounding tissue with the growth, all becomes inflamed and agitated. You bowel habits are effected--sometimes you have diarrhea, and other times you are constipated. Typically, endometriosis patients have constipation. Constipation, in turn, leads to more frequent urination, as the pressure builds in your colon, so does the pressure in your bladder. Also, my colon was not even in its anatomical place, so to speak. Because of the endo growth, my colon had shifted and was not situated correctly in my abdomen. Hence, another reason why I had issues with constipation. Again, "it's all connected."

Back in 2011-12, I had severe back pain and constipation issues--along with my chronic abdominal pain. Which is why I was referred to both a Gastrointerologist AND a neurologist to assess my constipation issues, back pain, and more recently, urinary frequency. But it all can be explained by the endometriosis. In fact, it turns out that I have Stage III endometriosis (it is diagnosed in Stages I-IV). All along I thought (again!) that I was crazy--but I wasn't! My body was responding to the severe-moderate growth of endometriosis, and I knew all along that it was all related somehow. But doctors, in their defense, are trained to investigate the body's symptoms in piece-meal fashion. Which sucks for those of us who do not have unlimited sick time to get to every doctor's appointment that is scheduled for you.

Finally, I wanted to mention that because of the successful excision, my organs were found to be in-tact and not penetrated by the endo growth. Therefore, I'm lucky that I am predicted to not have issues with fertility if the endo growth does not come back more aggressively than before. My ovaries, uterus, and fallopian tubes are deemed "fine" to someday get pregnant. (someday!)

One more thing, though, that took me by surprise: I have adenomyosis. This is a condition that refers to when endometrial tissue grows (microscopically at times) in the outer walls of the muscular tissue of the uterus. My uterus is 1 & 1/2 times larger than the average uterus, which is apparently a "classic sign." So remember when my doctor told me in 2010 that I could have adenomyosis but that he couldn't diagnose me? Well, I have it. Dr. Harkins tells me that having a large uterus is pretty tell-tale of this condition. And since he teaches this stuff, seeing hundreds of uteruses every week, I trust him. Luckily in my case, this does not impair fertility. However, it can cause pain and eventual infertility. Fortunately, I know that this is another part of my "story." Unfortunately, there's not really anything that one can do about adenomyosis.

So for the longest time, I was lost in a haze of pain and grief, not knowing my full story, what was wrong with me, and what I could do to get better. But now I am "found." Dr. Harkins not only gave my life back to me, he also counseled me after surgery to help keep improving my quality of life. I have a daily pain regimen that does include Opiods, but they are non-addictive and work well to relieve me from my (still) chronic pain. I also take Miralax once a day, daily, to keep my bowels healthy and regular. Eventually, he says, the frequent urination will dissipate (and it can't come soon enough!), but I still pee at least 4-5 times a night. Also, I have the Nuva Ring and I insert a new ring concurrently so that I avoid getting a period. You see, if you can "shut down" the shedding and growth of the uterine lining, there is evidence to support a lack of endo growth. However, birth control is not a cure. It is only a preventative. Lastly, I am embarking on a dietary journey that is supposed to help suppress inflammation--and also may help me lose the excess weight that I have always had. You may or may not have heard of the "Endo Diet," which is quite similar to the Paleo Diet. Basically, the Paleo Diet eliminates processed foods, fat/fried foods, most of your carbs from wheat flours and dairy. So, you see, it sucks! But it's worth it. I've been able to mold it to fit my lifestyle. I haven't completely eliminated everything on the list, but I've been able to significantly reduce my sugar, fat & gluten intake which has resulted in a 3 lb weight loss in the past 2 weeks. Hooray!

Blogging about all of this has really helped me through the healing process. I have to be honest: I was in a really dark place for quite some time. I feel like I'm finally "waking up" from a long, horrific nightmare. And if my experiences can help one person believe that they "aren't crazy," and empower them to find answers, then I've done my job. When you have endometriosis, you begin to think you're all on your own, that no one could possibly understand. But we do! There are many people out there who know exactly what you're going through and want you to feel better! The problem is: they're not all right in front of your nose when you need them the most. So my advice? Keep looking for that doctor who listens to you. Don't give up to finding a pain regimen that works for you. There is light at the end of the tunnel, and when you get there, trust me, you won't feel so lost any more.

Ignorantia juris non excusat.

Please Please Help!

Answer me this: How many times did a doctor dismiss your questions or concerns about what your "next step" would be? How many times did you have to psych yourself up for an appointment because you know you'd be answering the same ole questions again or getting the same ole answers? How many times did you end up in the ER only to be treated like you're a crazy person, a drug addict, a nuisance?

When I originated my blog, entitling it "You Aren't Crazy: endometriosis is real," I had hoped that this made enough sense to readers, to women who have endometriosis. Because throughout my experience, I've never felt more anxious about knowing my own body than I ever have before. And I have to wonder: How did I end up like this? I'm a confident young professional. When did I start second-guessing myself so much?

Here's a common scenario for me:

It's a Monday morning, and I'm sitting at my desk. I've been thinking about calling my doctor since I got to work because the nagging pain in my lower right side is there. Again. I reach down for my cell phone from my purse, and I'm instantly shocked by the stabbing pain that shoots throughout my insides. I sit back and remember: "Deep breaths." In a few minutes I'll be calm enough to pick up the phone and dial the number for the doctor's office.

I get through after a few attempts.

"Hi, I need to make an appointment for later to--"

"--Hello, can you hold please?"

"Yep."

Finally the receptionist returns to our conversation and takes-down my information.

"Ok, Jessica. We'll see you at 3!" she chirps, cheerfully.

They know me so well by now that I think they have my birthdate memorized.

Three o'clock can't come soon enough, but I manage to get through the better part of the day without secretly lying underneath my desk. The shooting, stabbing nature of the pain has subsided somewhat, but I'm too afraid to move around or sit with my back straight in a chair for fear that it'll start again. Or get worse.

In the examination room, I'm perched uncomfortably upon the examination table. I find that, if I lie back on the crinkle of the sanitary paper table slip, I feel a little bit better. I close my eyes and try meditating to manage the pain. Concentrate on a body part that doesn't hurt. My little toe. Breathe in and out, slowly. My little toe. Notice the parts of your body that feel fine. My little toe.

"Hello, Jessica. Can you tell me why you're here today?"

My first inclination is to sit up at full speed, and I do.

"OOOHHH. Ugh. Ow."

Dr. S steals a glance at me between typing away on her computer.

"I'm in pain again. The lower right side." I try to be cheerful, pleasant. I like Dr. S.

"What has your OB/GYN been doing for your pain?"

Nothing.

"I have a prescription for Tylenol with Codeine."

"Does that work for you?"

No.

"Sometimes. I mean, I took some this morning."

She jots down more notes.

"Jessica, I think you should continue treating your pain with the prescription your Dr. gave you. This is not my area of expertise."

Finally, after having seen my regular doctor for years regarding lower abdominal pain, she tells me that she can't treat me any further. This is not her area of expertise.

Ignorance is NOT an excuse.

Lately I've been wondering what it's like to be a doctor, the person who is responsible for calling the shots,  as well as patient health and wellness. It's so incredibly easy to criticize those whom we cannot identify with. After all, isn't being a doctor one of the most difficult professions? To be fair, these individuals (doctors, nurses, etc.) devote and dedicate their lives to caring for every one else. Can you imagine cleaning up someone elses' poop everyday? Can you fathom working a 48 or 72 hour shift with surgical tools and life preserving (or potentially fatal) drugs? Can you wrap your mind around literally holding someone's life in your hands? It's incredibly overwhelming just to think about it. In defense of doctors, I believe that I have (almost) no right to criticize them while they're trying to improve the quality of my life. The gift medical professionals give us, patients, is the chance at understanding our bodies and how they work.

So when is your doctor at fault for not trying to find you answers? 

The truth is, I don't know the correct answers to these questions. But I do know that allowing your patient to suffer is not excusable, even if your area of expertise is limited to Family Medicine and you don't feel comfortable treating someone for women's health problems. I get that. But I don't understand the logic behind allowing your patient to feel like they have no where else to go when their Dr. is clearly not providing the care that the patient needs, that I needed.

 When should you be concerned that a doctor doesn't take your needs or questions seriously?

You should be concerned if your doctor does not take you seriously if they continue to treat you in the same manner as your symptoms progress. YOU KNOW YOUR BODY BETTER THAN ANYONE ELSE. So listen to it! Bottom line: if you're not getting answers and you are starting to feel like a fool, see a specialist! (preferably at a reputable hospital or clinic which specializes in endometriosis, ovarian cancer, ovarian cysts, etc.)  

I know Dr. S means well when she tells me that my uterus is out of her comfort zone, and I appreciate her honesty. But if I would've have insisted on seeing someone who DID specialize in lady parts, I probably wouldn't be typing this today.

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.

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.