Endometriosis and my breaking point

As with most things in this world, menstrual cramps and those of us who suffer from them were not created equal.  Some (lucky) women don't even get them.  I am definitely NOT one of those women.

Instead, I get cramps so bad I can't function for days on end.  I'm talking pain-so-debilitating-not-even-heavy-narcotics-can-touch-it-agony-I-wouldn't-wish-upon-anyone-not-even-my-worst-enemy.

And no, I'm not exaggerating.

Ever since I was a teenager, I've struggled with painful menstrual cramps.  But over the past year or so, they've gotten significantly worse.  I can honestly say I've experienced a pain level of 10.  And when it says "writhing agony", that is truly what it feels like.

I've passed out from the pain (and not just once).  Thankfully someone has always been there to catch me (except one time in college my roommate found me on the bathroom floor and totally freaked out).  I've been driving and had to pull over because the pain was so bad.  I've been to the ER (several times).  Just last month I was in the ER and after finding nothing else wrong with me - liver, kidney, gallbladder, and appendix all checked out fine - was finally given a shot of morphine.  Only to discover that morphine doesn't really work for me, or at least it wears off much sooner than it's supposed to, despite the nurse insisting that "morphine works for everyone".

After being on some form of hormone therapy since I was 15, I decided enough was enough.  No more pills, no more shots, no more blood draws, no more tests, no more waiting rooms, no more invasive procedures.  This was in January 2011.

I had been on the pill (for pain management) since before I could drive.  After getting married and finding out we probably weren't going to get pregnant the old fashioned way, we started seeing an infertility specialist.  For anyone not familiar with reproductive medicine, it can seem like a big guessing game.  What works for some women doesn't work for others.  If a cycle ends in a BFN (big fat negative), sometimes the only "medical" advice you'll get is to just try again, which we did over and over.  After more than 3 years, including 8 cycles of Chlomid and 4 cycles of IVF, my hormones (as well as my spirits) were a mess.

After the twins were born (via gestational carrier), my cramps were so bad again I could barely take care of them, I did 7 rounds of Lupron Depot.  Lupron is an estrogen suppressant, so basically it "tricks" your body into thinking it's in menopause so you don't get a menstrual cycle.  However, the price of NOT getting a menstrual cycle came with a whole list of things I DID get, including acne, hot flashes, weight gain, anxiety, and insomnia.  After everything I had put my body through, I just wanted some time to do nothing.  No hormone therapy of any kind.

After stopping the suppression shots, I didn't have a menstrual cycle for over a year.  This was anticipated, but still ... Yipppeeeeee!  And even after that, my cycles were sporadic (sometimes I'd go 6 weeks in between cycles, sometimes 2 weeks).  For about 5 months, from July to October 2012, my cycles were every 28-32 days.  At first I was excited, I had never experienced a legitimately "regular" (non-hormone induced) cycle.  In the very back of my mind there was even a glimmer of hope that maybe I'd have less pain (or maybe, just maybe, I could even get pregnant on my own).  But then my cycles were getting shorter and shorter.  I had one that lasted 21 days, then 16 days, and then two cycles almost back-to-back.  The LESS time I had in between the MORE I was in pain.

I'll never forget the Tuesday before Christmas, I was working and about half way through my shift I was so miserable I had to take half a Vicodin.  By that evening I was in so much pain I couldn't eat or sleep.  I spent the next 5 days almost completely bed ridden.  When I did get up, I had to walk slumped over.  I was taking pain pills every couple hours, and even that was barely taking the edge off.  Christmas Day was a total blur.

The next day was more of the same.  I called and got a same day appointment with Dr. W.  She ordered blood work, she did an ultrasound in the office, and even referred me out for an x-ray.  Everything was normal, which I guess was a relief, except I still didn't have a game plan for dealing with the pain.

By New Year's Eve I finally starting to feel better and I remember being so thankful that I could take my kids to the Zoo and not be doubled over in pain.

A couple days later, it started all over again.  I think I had maybe been pain free for 3 days.  Cramps and pain like I've never experienced.  The pain never got below an 8, and hovered for days on end at a 9.  I was mentally and physically at my breaking point.

Dysmenorrhea is the medical term for the cramping that occurs before and during a woman's menstrual cycle.  For anyone with more than the normal amount of cramping, there's usually an underlying reason.  For me, that reason is endometriosis.

Endometriosis is defined most simply as the presence of endometrial tissue outside the uterus.  It's not supposed to be there, and from a medical perspective they actually aren't sure how or why.  Making it even more of a mystery is the fact that you can't even confirm the existence of endometriosis without surgery, and (why yes, there's more) there isn't even a direct correlation to the more endometriosis there is the more pain you have.  In other words, a woman can have a minuscule amount of endometriosis and a severe amount of pain, or a significant amount of endometriosis and very little pain.  I happen to have both - a lot of endometriosis and a lot of pain.  Still baffles me that we can create human life outside the human body but we don't know why tissue grows somewhere it's not supposed to and cause some women to suffer incredible pain.

There are theories, of course.  The most common is that during menstruation some of the endometrial tissue backs up through the fallopian tubes and implants itself in the abdomen where it continues to grow.  Another theory is that endometrial tissue is distributed from the uterus to other parts of the body through blood flow.  Yet another theory is that it's genetic.  In my case, a genetic predisposition is the most plausible explanation.  My mom and maternal grandmother also had endometriosis and struggled to conceive.  My parents were actually told by numerous doctors they would never be able to have children.  When I came along 6 years later, one doctor actually told them I couldn't possibly be their child (not exactly what new parents want to hear upon having their "miracle" child).

The only definitive way to diagnose endometriosis is to perform a surgical procedure called a laparoscopy.  Although my mom had all the symptoms, she didn't know for sure she had endometriosis until she had a hysterectomy at age 46.  My grandmother had a hysterectomy even earlier at the age 38.

I actually had my first laparoscopy in November 2006 (after my first of two miscarriages) and I had so much endometrial tissue in my abdomen that it actually adhered to several surrounding organs, including my bowels, liver, and kidney.  They were able to remove most of it, and the prognosis was that I should no longer have any problems getting (and staying) pregnant.  Sadly that wasn't the case.  

The one and only thing that can actually eliminate endometriosis altogether is a hysterectomy.  A couple years ago I had proposed it to my previous OBGYN and he flat out refused.  He claimed I was too young and still within child bearing years (never mind that despite all efforts I was still unable to get pregnant, had decided to use a gestational carrier, AND had 10 embryos still frozen from my past IVF cycles).  Not too long after that we switched insurance carriers to Kaiser.  My first appointment was with a midwife, and while I really liked her, she wasn't licensed to perform surgery.  She did refer me to Dr. S and although her first available appointment wasn't for another 2 months, she was absolutely worth the wait.

I first met with Dr. S in July 2012.  At that time we talked over my history and while she wasn't immediately opposed to a hysterectomy, she also wasn't willing to jump right in either.  She wanted to run some tests and just get to know me.  We talked at length over the course of several appointments and each time she made sure I understood that a hysterectomy was a permanent solution and there was no going back.  We also talked about the possibility of leaving one ovary, even though I was fairly set on removing both.  I think all along she wanted me to leave one ovary, but she never pushed me one way or the other.  Not only are there cardiovascular and other risks associated with taking both ovaries, but I would also have to do hormone replacement - the exact thing I didn't want to do.  

It wasn't until after back-to-back cycles in December and January, and she could actually see for herself how miserable I was, that she agreed to the hysterectomy.  Surgery was schedule for March 1, 2013.

After one last discussion we decided to leave the left ovary, assuming it was clear of endometriosis and scar tissue.  She would take my uterus, cervix, both fallopian tubes, and my right ovary.  Surgery couldn't come soon enough.

More to come on the actual surgery, what happened just a few days before, and my recovery.

"As a disease, endometriosis can take away many additional aspects of a normal life. Mothers cannot reliably meet the needs of their children. Wives try to push through the pain. Grinding fatigue as severe as that experienced with advanced cancer is present in most cases. Bloating, moodiness, and bladder and bowel issues are common as well.  Feeling like a vibrant woman is long since gone. Acting like the loving and compassionate woman, mother and partner that she truly is becomes more and more difficult. The stress on family relationships is common and real.  Even at this stage, most women fight the disease, refusing to let it completely take over their life. You would most likely pass right by them in public, having no idea of the devastation they are dealing with. Most of the time they get up, put on a brave face and do their best to live a normal life."

- Dr. Cook, world renowned gynecologist who specializes in the treatment of endometriosis and pelvic pain

What I learned from my son's experience

Our son, Max, was diagnosed with severe GERD (gastroesophageal reflux disease) at the age of 4 months.  I wasn't breast feeding and despite trying every brand of formula on the market, he was barely eating.  After months of trial and error we were finally introduced to a formula, called Neocate, which seemed to work for his tummy.  Neocate is an amino acid based formula, or elemental formula.  The proteins contained in Neocate are in their simplest and most broken down form, making it easier for the body to process and digest.  They are also the least likely to trigger an allergic or adverse response.  Not that it mattered but Neocate wasn't covered by insurance, only came in a sample size, and cost $85/can.  Of course we would have paid double (triple!) if it meant he was getting the nutrition he needed.

Neocate worked for the most part until he was about 10 months old.  Once we started the transition to solids, Max developed a debilitating fear of food in any form.  He wasn't sleeping for more than 45 minutes at a time.  He was irritable and at times inconsolable for hours on end.  I remember holding him in my arms and walking around our house for what seemed like forever, and yet he just kept crying.  Despite his pediatrician telling us everything was fine, I knew it wasn't.  Something was wrong, and despite all of my pleas, no one seemed to believe me.

Just after his first birthday, Max was hospitalized at Doernbecher Children's Hospital.  He had gone from the 25th percentile for weight down to the 3rd.  He was diagnosed as "failure to thrive" and given an NG tube (a thin, soft tube that went up his nose and into his stomach).  And yes, watching my son get strapped down and a tube forcefully threaded up his nose was even more horrific than it sounds.  But then having to do it at home by ourselves for the next 2 months ... well, it was absolutely terrifying.

Initially I felt like it was my fault, that perhaps I hadn't done enough, said enough, complained enough, for someone to take my concerns seriously.  But then I remembered all of the phone calls I had made, frantic voicemail messages left on the after hours line, a notebook full of research and questions, and oh so many appointments.  At one point they recommended bringing him in every other day for a weight check, which made us that much more nervous and concerned, but of course we did it.  And then how after a while the nurses started asking us why we was in the office yet again, and my increasingly enraged reminders to them that no, he still wasn't eating.  One look at my son with a tube up his nose and clearly everything was NOT fine.

The reality of the situation was my son was in pain, I didn't have answers, and I felt helpless.  Per the GI specialist, we had done what was medically necessary (the NG tube).  But I had become increasingly skeptical that he hadn't outgrown at least some of the symptoms of GERD, and perhaps we were dealing with something else entirely.  Until this time, we had been relying solely on what the doctors and nurses were telling us about Max's condition.  But no one - not even our inner circle of health care professionals - could tell us why Max wasn't able to eat on his own, and more importantly, how he was going to get better.

As the weeks dragged on, the stress of having our son on a feeding tube (both emotionally for us, and physically for him) was just too much.  Once I stopped second guessing and blaming myself, I became convinced that we needed a different approach - something less invasive for sure, but also something more personalized and more proactive toward an eventual solution.  I was at the mercy of others for the care and treatment of my son, but when you have little to no faith in the people providing that care, I knew we needed to look elsewhere for help.

With no one willing to look beyond his initial diagnosis, I started reaching out to friends and acquaintances. Eventually I came across someone who understood what we were going through, what life was really like for Max (and us), and suggested we take him to a behavioral therapist.  A what?  I mean come on, Max didn't have behavioral issues.  He didn't act out.  He wasn't aggressive towards others.  In fact he was the exact opposite - loving, sweet, docile, and according to every evaluation or test he'd been given, he was perfectly fine.  So what would we take him to a behavioral therapist?  No one wants to hear their child is outside the norm, but in the end going to see a behavioral therapist was one of the best decision we could have made.  (More on this in another post.)

While this experience totally sucked and tore me apart emotionally, it also shaped me as a parent.  I wouldn't be the person (or parent) I am today without having gone through this experience with my son.  Part of me is still angry and bitter, but I also learned a lot about myself, about my role as a mother and a parent, and realize now that it happened for a reason.

If I had to list the things I learned from this experience (and could pass along to anyone else going through something similar) here's what they would be:

1.) Always trust your gut!  Call it mother's intuition, call it a Mama Bear protecting her cub, call it whatever you want, but when you're at a crossroads or have to make a decision, go with that feeling in your gut.

2.) When people give you advice - be it someone in the medical profession, a family member, friend, or even someone you just met - they usually have good intentions.  But things like "well, I'm sure he won't starve to death", or "he'll eat when he's hungry", were just plain cruel and made me want to scream nasty things at them.  Proved by the fact that Max dropped so low on the weight chart that he ended up on a feeding tube, he was clearly not the type of kid that would "eat when he's hungry".  Max wasn't your typical picky or lazy eater, and yet from a medical perspective everyone treated him like he was, and just expected him to grow out of it.  While he did eventually overcome his fear of eating and to some degree I do think he needed time to mature and "grow out of it", it wasn't without a great amount of suffering (on his part) and effort (on our part).

3.) I had to be the most aggressive advocate possible for my son.  Even if it meant questioning everything I was being told.  I had to learn the hard way that just because something works for "most" kids doesn't necessarily mean it would work for mine.  And not being afraid to get a second, third, or even fourth opinion.  This would become especially true when it came to my own health struggles down the road!

Resolution #1: Drink more water

I’ve been told I should be drinking approximately half my weight in ounces per day.  I’ve tried but drinking that much water takes real effort.

Resolution #1: Drink more water

I don't know exactly but I probably drink about 30 ounces of water per day, maybe upwards of 50 ounces on a good day.  Not nearly enough, I know!!!  So in order to motivate myself, I did a little research and here's what I found out: 

By the time you’re thirsty, you’re already dehydrated.

That feeling of craving a drink of water, or having a dry mouth or chapped lips, means your body is already working overtime and less efficiently than if you were properly hydrated.  Chronic dehydration can cause sickness, premature aging, allergies, asthma, colitis, constipation, and migraine headaches, just to name a few.  YIKES!  It can also cause more everyday ailments such as irritability, confusion, and fatigue.  Not to mention that more and more people are using prescription drugs as their primary form of treatment, when instead many of these conditions (if not all of them) could be prevented by just drinking the right amount of water.

Not drinking enough water when exercising causes your heart to work overtime.

Water acts like a lubricant and is a vital part of the many chemical reactions in the body.  When not properly hydrated, oxygen and nutrients are transported less efficiently to the muscles, thus making them recover slower.  Being well hydrated also means your heart doesn't have to work nearly as hard to pump blood throughout your body.

Not all water consumption has to be in the form of liquid H2O.

When I think of "drinking" water, I think about it as just that.  But you can also “eat” your water.  Foods high in water content are (fruits:) strawberries, watermelon, raspberries, pineapples, cantaloupe, peaches and oranges, and (vegetables:) cucumbers, iceberg lettuce, celery, radishes, zucchini, tomatoes and cabbage.

Water helps to fight fatigue.

When drinking caffeine in the form of coffee or sugar sweetened drinks, you're actually masking the issue of fatigue, not fixing it.  Coffee in particular acts as a diuretic, which can cause dehydration.

I've heard varying opinions on drinking fluids at mealtimes.  One argument is that water helps us to break down food and be able to absorb the good nutrients that come from whatever we've eaten.  The opposing argument is that water dilutes the digestive enzymes and stomach acids that are essential to breaking down food and absorbing nutrients.  They both sound like valid theories to me.  Personally I don’t tend to drink a lot at mealtime, but not necessarily for any of these reasons.

For now my goal isn't necessarily to drink a certain amount of water per day.  I'll just start by drinking more than I do right now, and trying to stay ahead of the curve by not waiting until I'm already thirsty.

My cranky tummy

I've struggled with tummy related issues for a long time.  As in 10 years, if not longer.  The major stuff has all been ruled out .... no tumors, cancer, blockages, or other structural issues.  But I still get stomach aches ALL THE TIME.  And there's no rhyme or reason as to when or why I get them.

The previous September had been a particularly bad month so I made an appointment to see my primary care doc.  Dr. W is wonderful and always very proactive.  After discussing my pain and doing an exam, she ordered blood work.  I got most of the test results back the same day and other than a slight elevation in bilirubin (which is related to your liver), everything was fine.  She also ordered an ultrasound to check for inflammation.

I had a chiropractor appointment the next day and also Dr. G what was going on.  I've been seeing Dr. G on a regular basis for 2 years, so he's also familiar with my history.  As I was explaining to him where I was hurting and my symptoms, he had me lay down and take a deep breath.  He then pressed deep into my tummy and said he could actually feel some inflammation in my liver.  He recommended I start taking a couple supplements to help detox my liver and reduce the swelling.

I had an ultrasound 2 days later which confirmed my liver was inflamed, but only slightly.  My kidney and gall bladder were both fine, so that was good.  Dr. W didn't seem too worried and suggested I come back in a week for follow-up blood work.  I also asked if she would test me for food allergies at the same time.

The second round of blood tests showed my bilirubin was back to normal.  Although the allergy tests were also negative, they only tested the 3 main culprits -gluten, dairy and fish.  A couple weeks later I still wasn't feeling well so I emailed Dr. W and asked if I could see an allergist.  At this point, I was convinced my tummy issues were food related.  She gave me a referral but the next available appointment wasn't for several weeks.  In the meantime I decided to cut certain foods from my diet, namely dairy and beans.
 
I met with the allergist in late October and after making a list of all the foods I eat on a regular basis, he tested me for over 40 different foods.  As I waited for the test results (which took another 3+ weeks), I got lazy and just didn't keep up with my self prescribed diet, or with taking the liver supplements.  Then it was Thanksgiving and ... well, you know how dieting usually goes during the holiday season.  Let's just say I was not a beacon of will power.

And then in the middle of December things went from bad to worse.  More on that to come in a separate post.

***************

Although I essentially passed over the part about the irregularity in my bilirubin levels, at the time I was much more concerned.  I had a similar panel of blood tests completed about a year ago by a naturopath and my bilirubin was slightly elevated at that time as well.  After quite a bit of research, here's what I found out ....

Bilirubin is the bi-product of a destroyed red blood cell, and an excess of bilirubin can manifest as yellow pigment (most often in the skin and eye tissue).  It is completely normal to have some amount of bilirubin in your blood as red cells have a 120 day life span.  As they die off, new red blood cells are created.

Bilirubin is absorbed from red blood cells and excreted it in the form of bile into the stomach.  Between the liver and stomach is the gall bladder, which stores the bilirubin/bile.  When we eat, hormones signal the gallbladder to contract.  The bilirubin/bile is then released into the stomach and used to aid in digestion.
High bilirubin levels can come from either:

1.) Damaged liver cells that aren't able to convert the bilirubin into a soluble from to become part of the bile.

2.) Blockage of the bile ducts with a stone or growth, malformation or narrowing of the ducts, or infection in the ducts.

3.) If the red blood cells die off too fast or there are too many red blood cells.
In the first scenario, the danger comes when the bilirubin/bile is blocked and can't reach the stomach.  The immune system's response is inflammation, and if not treated, can cause the liver cells to die off and scar tissue to form.  This is known as cirrhosis of the liver and can become an irreversible, progressive disease.

In the second scenario, again the danger is a blockage or back-up of bilirubin/bile into the liver.  Stones are known to be incredibly painful and sometimes have to be surgically removed.

In the third scenario, blood test results will usually show a corresponding abnormality (increase) in red blood cells.  A hematologist would then need to be consulted.

In general, any of these can be cause for concern.  Thankfully, mine appeared to be just a temporary blockage and my liver was able to recover on its own.

New Year, New Resolutions

This is my second foray into blogging.  I also have a blog for all things kiddo related.  I will admit I'm not exactly sure where I'm going with this one, except that I'll be writing about diet, exercise (Crossfit in particular), and my (various) health struggles.

And since we just started the new year, how about a few resolutions.  Stay tuned for Resolution #1 on becoming a BETTER, HEALTHIER, and FITTER me.
Until then ....

HAPPY 2013!!!