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.