It’s true that when you get a serious illness, co-morbid illnesses always follow.

Now I also have to fight like a girl for Endometriosis.  I didn’t see it coming, as I had seen so many doctors for my pelvic pain and had been dismissed (probably for being a girl who presents with a large number of illnesses…).  Finally, I went to a surgeon, who is the only doctor who deals with sexual problems on the side of his main practice in the area.  I went in expecting sexual therapy advice, and instead, he listened to me and immediately scheduled me for surgery.

I rarely listen to my answering machine messages, so I found out on a Wednesday that my surgery was going to be Friday morning.  It was probably better like that, as I would have had too much time to think about the situation otherwise.  I came out of surgery in extreme pain and once the doctor came around he told me that there was indeed a reasonably serious case of endometriosis causing my pelvic pain.  I normally wouldn’t be happy to hear such a diagnosis, but I was because a) it made the surgery and pain worthwhile and b) showed that the pains I feel in my body are indeed accurate and real.

Currently, it’s hard to get doctors to take you seriously for having Fibromyalgia, as there is just not enough solid evidence out there to support what we all feel and know to be true.  I do not doubt for a second that my body suffers from Fibromyalgia and MECFS.  All the signs and symptoms are there and match up with everyone else I know who has been given the same diagnosis.

Endometriosis is another tricky illness to fight, and I hope I don’t have to have many surgeries to keep it under control.  Either way, this discovery has landed me more credit in terms of listening to my body (both for myself and for my physicians).

These illnesses do indeed flock together, and if you are suffering from Fibromyalgia and have severe pelvic pain – make sure someone investigates.  Knowledge is power, even in the case of chronic illness.

I hope you are all keeping up the fight!

Much love to you all,

Annie

So, one night back in April last year, I was so tired that I fell asleep with my clothes on. I woke up around 4am having some pain in my left breast because the underwire from my bra was poking into it. I started feeling the red spot on my breast and began to panic cause I felt a lump. Two days later, my journey to combat cancer started.

I went from feeling a lump, to having a mammogram, to having a biopsy – in a matter of about a week. I fell on my kitchen floor crying when I was told over the phone that I had breast cancer. Next up was a lumpectomy and 33 tiring treatments of radiation. My world got turned upside down. But here I am… cancer free!! I fought like a girl! I fought for me and fought for the memory of my mom who passed away twenty years ago from cancer.

Cancer survivor and proud of it!!

Rachel
Submitted 9-14-11

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

So, I have been here before…sharing my FLAGC story about RA. Since that post, my story has changed.

I received a phone call from my doctor that left me in tears, then ready to press on. As of today, I don’t have answers as far, as my diagnosis, but I’m finding my way back from square one!

The following is from a blog post in September; I decided to continue sharing my story so others won’t be discouraged by their present situation.

” I ask not for a lighter burden, but for broader shoulders.”

This was one of the first quotes I clung to when I first made the choice to speak up about my illness. I knew it was going to take a lot of God’s guidance, faith, and guts. I have reached many cross roads over the last year: raising my son, getting laid off, losing insurance, my condition getting worse, finding “the right doctor”, trying to uncover the best pain management, looking for work, applying for this and that while keeping a smile on my face and saying “I’m okay”.

This week posed a new set of issues (mind you, it’s only Tuesday!).  Monday, learned that my diagnosis was incorrect, in so many words. The blood work was inconclusive for RA and Lupus so I’m not quite sure what’s going on. For most people, this would be good or encouraging – for me, this has become a game. If I could name the game, it would be “Jenga” – pulling away different blocks from the stack, hoping the entire thing doesn’t fall apart. I was never good at that game.

While this is going on, my pain has been off the charts for weeks now. I do have a considerable amount of pride and it took four people to convince me to go to the ER. Now, I haven’t met one person that enjoys hospital visits in any degree…but I would classify a nine (yes, “9″) hour wait as beyond ridiculous. I did find a way to make it somewhat enjoybale (refer to #TalesFromTheER via Twitter).

Also, the last two days posed some personal drama that should be scripted for Lifetime.  I can’t apply all of it to virtual paper but it includes pain, betrayal, deceit, and misunderstanding.  For now, I can’t control the physical pain – but I can do my best to lick the emotional wounds so I can brave the new journey ahead.

I believe that God will continue to carry me through all this, no matter how dark the night. Yes, I’m back a square one, but I will be stronger because of all of this. My shoulders are weak, but they are indeed broad! I appreciate my #spoonie friends for “getting it”, kinda hard to explain how people whom you never met have sympathy for each other, but it’s easy to understand. I also thank my immediate family (Dad, Mom, Sis, Bro) for fussing at me and smothering me in a loving way.  That’s how we roll.

Best!

Ebony
Virginia
Submitted 9-13-11

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

In November 2009, I was diagnosed with something most would panic and question, ”Why me?” I have Young Onset Parkinson’s Disease. I am now 47 years old.

I noticed the tremor in my right hand in May 2009 and I finally decided in October of that year, ”I don’t think this is normal.” My physician did several tests including an MRI to rule out certain things. He had already told me he was sending me to a neurologist anyway.

On the first visit, my neurologist had me do specific movements and actions while he observed. He noticed that the tremor wasn’t the only thing not normal. My right arm has almost no swing when I walk, I get tongue tied and have to hunt for words when I speak, and since the diagnosis other symptoms have appeared confirming that I do have Parkinson’s Disease.

I have a daughter that is a senior in High School. She plays clarinet and marches in the band. I go on every trip. I help the band members get ready and this year I am in charge of their uniforms. I am also an Ordained minister and youth pastor along with being in ministry with my daughter. I am loving every minute with all of these teens. They keep me going when all I want to do is give up. These kids all know about the disease and are always there to give me a helping hand. They all lovingly call me “Mom”.

I have to deal with some adults that just don’t get it. I get tired of people saying, ”Oh, that’s awful. I am so sorry to hear that you have Parkinson’s Disease.” I just ask them, ”Why?” That’s when I tell them it is not a death sentence. I can do most all of the things I use to do at this time. It just sometimes takes a bit more time to get it done and it is getting a little harder. At least I give it my best shot and keep on going.

Yes, I do fight like a girl and I am proud of it.

Anita
Tennessee
Submitted 9-13-11

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

Hey there warrior girls!  It’s time for our first Member Spotlight of 2012 and–drum roll please–we are proud to shine the light on Shannon from Toronto,Canada, who sends us all sunshine and smiles.

Shannon is a proud member of the Fight Like a Girl Club and blogs over at Living with Fibromyalgia.  She can also be found on Twitter as @LdyLarke.   She lives with chronic pain, fibromyalgia and chronic fatigue.

Up Close and Personal with Shannon

Here is Shannon’s take on living life with chronic illnesses:

What would the title of your illness story be?

It’s a long road from undiagnosed to invisible illness.

Who were you before you got sick? Who are you now?

I was a gregarious, vivacious, physically active, attractive and sports-minded person who enjoyed life and lived life to it’s fullest. Now I’m homebound, frequently angry and frustrated, severely overweight due to pain, medications and depression.

Sometimes I feel like all the things I enjoyed to do have been taken from me because of illness and my inability to work due to disability from illness.

How has being ill affected you physically, emotionally, socially and spiritually? How do you cope with these changes?

Physically, I am simply incapable of doing much of anything at all. I must now ask for help for many “normal” day to day activities. If I want to get something done or run an errand I have to wait until my hubby has time or can do it himself. I don’t have the option of just going out and do it myself anymore. Even when I can, my energy and physical ability to do so is so depleted that I could never get what I wanted done anyway!

A simple visit to my doctor’s office often lays me out for 2 to 3 days afterwards!

Emotionally, I’m actually doing “O.K.”   I had a severe bought of depression with agoraphobia in the early 2000′s. I managed to get out of that dark black hole of misery and I refuse to ever allow it to happen again.

Spiritually, I’m still the same gentle and kind soul I have always been. I’m just more likely to turn the other cheek and avoid confrontation, because I find that confrontation of any kind physically hurts me.

Socially, I would be considered to be completely inept! I don’t socialize due to my health and financial situation. I have no close friends where I live. But don’t feel sorry for me!  My online social life is plenty enough for me.

Do you look at your life differently now than before you were diagnosed? If so, how?

Being diagnosed with FM/CFS was a revelation to me. My life suddenly made sense. The physical and emotional experiences I have had over the last few decades make sense! I now know that a lot of the symptoms I have had over the decades are not just weird personal quirks or flaws. They are actual symptoms of a real illness that I have no control over.

Now as I slow down everything I do, I find I have a greater sense of patience than I ever had before.

I also find that I look at people a whole lot differently because I have an invisible illness. I now think ‘Who has the right to judge anyone about anything when you have no possible way of really seeing what someone is going through in their daily lives?‘

What has been the hardest thing about living a life with illness?

Being chronically in pain has definitely given me a huge hit in the self-worth department.  Between the pain, inactivity because of it and pain medications, I have gained a lot of weight and my body image is terrible. I often have negative and demeaning thoughts of myself because of it.

I often don’t feel worthy of anything.

I sometimes feel that somehow I have caused my illness to happen, because of something I might have done. Sometimes I feel that being sick, tired and always in pain is a price I’m paying for something I said or did in the past.  Now don’t get me wrong here, because I haven’t done any horrible or illegal things … I think of it as being a “I played hard and now I have to pay hard” kind of thing.

Who and/or what has helped you cope with your illness?

Social media sites (especially Twitter) and all the wonderful people I’ve met there who are just suffer just like me.  Finding support from people who know exactly what you are going through is so important.

I have found a daily journal extremely helpful to me. I also seek to help others by blogging about my personal experience with FM/CFS.  I hope my writing encourages others to speak up to their own family, friends or even their doctor so they can get the support they desperately need AND deserve.

What have you learned from your illness experience?

By expressing how I feel through daily journals and blogging, I have really learned about myself! I’ve become re-aquainted with an old friend–ME! I am slowing realizing that I AM worthy and that I do deserve to live a happy and relatively pain-free life.

What are you most grateful for?

• My husband and caring family who support me emotionally and financially whenever necessary.
• The ability to still walk on my own, even if not very far.
• Most of all, I am very grateful that I am not alone in this.

If you were to give someone advice about coping with your illness, what would it be?

First, I suggest you write everything down. Create a daily journal to help you keep track of what you are feeling, which medications you are taking and all the other things you do to treat and cope with your illness. This is especially helpful if you think you are going to need to apply for disability or financial support.

Secondly, find an online support group. If you have difficulty talking about what you are going through with friends or family, you would be amazed at how truly helpful it is to talk about it to strangers. Those strangers will become dear friends that truly understand you and what you are going through like no one else in your life. You don’t need to use your real name or share your personal details unless you want to.  There is no excuse for not reaching out for help.  Just do it!

What do you want for yourself and what do you want for others living with your illness?

I want researchers to hurry the hell up and find a solution for to chronic pain.

I want doctors to wake up and start actually listening to patients in chronic pain. And I want doctors to actually care for the well-being of their patients.  I’m also tired of drug companies pushing doctors to try out their new drugs on desperate people who only want some pain relief.

I don’t want politics or a patient’s size/appearance to continue to be the reason why so many chronic pain patients do not get the support or relief they deserve from the medical practitioners.  Chronic pain really is a serious issue that is not being addressed adequately in North America.   We shouldn’t have to beg for pain relieving medication, not ever!

I also hope more and more people to rise up and become advocates for the invisible illness they suffer with.  I think that if we got together online, we’d be a massive number of people that could overwhelmingly make a difference.

I hope a brighter light shines on those of us that suffer debilitating pain and anquish in doing the simplest “normal” day-to-day things “normal” people do and take for granted.  Because we ARE worthy and we DO deserve to live a “normal” as possible life, just like everyone else.

Want To Be In the Spotlight Too?

The informational content of this article is intended
to convey general educational information and should not be relied upon
as a substitute for professional healthcare advice.

 When you are first diagnosed with Endometriosis it’s hard to understand exactly what’s going on in our bodies but even harder is when you try to explain it to someone else. You can give them a list of symptoms - painful periods, Pain with bowel movements or urination, Excessive bleeding, the list could go on but for the most part that is a huge chunk of it. One of the worst things is getting that look that says you’re a wimp and then “Well I have heavy painful periods too.”

So how do you tell your family and friends why yours is different? And how do you explain it in a way that will make them see what you’re going through?

The first thing is you have to know what Endometriosis is. If you’ve been diagnosed with it then your doctor has already explained it but just to remind you, here is what the Mayo Clinic defines Endometriosis as-

“Endometriosis is an often painful disorder in which tissue that normally lines the inside of your uterus — the endometrium — grows outside your uterus. Endometriosis most commonly involves your ovaries, bowel or the tissue lining your pelvis. Rarely, endometrial tissue may spread beyond your pelvic region.

In endometriosis, displaced endometrial tissue continues to act as it normally would: It thickens, breaks down and bleeds with each menstrual cycle. And because this displaced tissue has no way to exit your body, it becomes trapped. Surrounding tissue can become irritated, eventually developing scar tissue and adhesions — abnormal tissue that binds organs together.

This process can cause pain — sometimes severe — especially during your period. Fertility problems also may develop.”

Now, in this definition, it says that rarely emdometrial tissue spreads beyond your pelvic region. This past December I had Endo removed from my stomach cavity, from off different places where it was eating along the lining of my stomach, and along some of my organs.  Everyone is different and my observation has been that Endo seems to not want to totally stay with the textbook definition of things.

Now that you know what it is, and you’ve talked to your doctor about what stage you are at and where all the Endo is in your body it’s time to tackle how to tell your family and friends.

The way I explained it to mine was similar to what the Mayo Clinic’s definition is. I simply told them that the lining of my uterus had gotten out of my uterus and was bleeding in my pelvis causing pain, scar tissue and growths. I explained to them that I had pain equal to an appendicitis every month and I was in so much pain that sometimes I couldn’t move, couldn’t speak, couldn’t do anything and would spend days in bed.  It’s also a very good idea to talk to your doctor about how to tell your family. I was around 17 when I was diagnosed so my mom was the first one in my family to talk to my doctor and get the first hand information. Find out if your doctor is willing to talk to your family members if any of them have a question.

When you first are diagnosed let’s be honest, it’s scary! In a way it’s a relief to find a reason for the pain but then you think “Oh my gosh, I have an incurable disease.”  It’s scary and it’s hard to wrap your head around in a lot of ways.  When you start to tell your family and friends remember how you felt that first instant you found out. When you felt like your world totally turned upside down because that’s how the people that love you are feeling too. Think about your mom, sister, daughter, and niece, think about how much you love them and how you would feel if they came to you and told you what you are telling them.

People react in different ways. My mom cried, some of my friends wanted to know what they could do to help me, some wanted all the details and some didn’t want to talk about it at all and still don’t to this day. When you tell someone you have to understand that each person handles things in their own way. As much as we need someone we’re close to and we love to reach out and support us that are not always the case. Sometimes we have to be willing to support them. Often times I have to remind myself that I’m not the only one affected. I’m not the only one fighting this fight. My parents, my fiancé, my close friends that see me go through these things; they are all in it with me too. I have to remember that even though I’m sick it’s not all about me. Watching someone you love fighting a long painful battle is never easy.

So to kind of give us all prospective on what it’s like to be someone on the other side of the fight I’ve asked my mom to give a little of her experience of what it’s like to be the mother to someone fighting endometriosis.

“One of the hardest things I’ve ever had to do is watch Rachel fight this terrible disease. There are no words to explain the helplessness I feel when I hold her as she is in so much pain her entire body is shaking.  She is stronger than anyone I know.  She fights hers silently.  I would tell anyone who has a loved one who is fighting this disease to give them all of the encouragement you can to keep pressing on.  It is not easy as you watch this happen month after month and watch treatment after treatment fail.  We searched from the time she was fifteen years old until she was seventeen years old to find why she was in such severe pain.  She underwent test after test as her doctor searched for an answer.  Unfortunately, the doctor she saw at that time didn’t know very much about endometriosis and thought you had to be older to even have it. She began to act as if she thought it was all in Rachel’s head.  Finally, we had a break through during an ER visit.  A male nurse stuck his head in the door after hearing my frustration at the doctor.  He asked if we’d ever taken her to a Gynecologist and had her checked for endometriosis.  I said no and he advised me to give it a
try.  Thankfully he pointed us in the exact direction we needed to go.  I was so tired and frustrated with doctors by this time.  I was tired of seeing my daughter crying in pain and no one being able to give me a reason. But the helplessness and frustration didn’t stop with a diagnosis.  Then came the educating time and the disappointing news that there wasn’t much known about this disease and that it seemed as if it was put on the back burner with research.  It seems with this disease you have to just have a hit and miss time of trying to find an answer that works for you.  I know that someday someone will finally find an answer.  And until then I encourage you all….KEEP FIGHTING and pressing on and know that you have people rooting for you every step of the way!” – Lisa Bain

This is not an easy fight. And we cannot do it alone. We can’t get through this fight, day in and day out without the support of the people around us. So as you lean on “your person.” remember that it’s a fight for them too and let’s not forget the other side. Because we couldn’t do it without them.

Much love and pain free wishes!

The informational content of this article is intended to convey general educational
information and should not be relied upon as a substitute for professional healthcare advice.

I remember my Mom telling me how lucky “we” were that we didn’t get painful periods. Heavy, yes. Painful, no. Well, at least according to her. And for some reason I can’t pinpoint, this made me unwilling to speak up and say that I DID have pain. In the early womanhood years, the pain was bearable. The heavy flow (had to get up every two hours the first couple nights to change) was a tougher battle. But, over time and bit-by-bit, the pain came. At first, it was pretty minor but it steadily got worse. In college, I’d occasionally lie down to escape it. By grad school, I’d curl up to cry and lose a few days of studying. Within a year after finishing school (24 yo), it was at the “just hope to die” level.

I still didn’t speak up. I don’t know why. I’d never been healthy. Two prior ENT surgeries, hives from nowhere, migraines…I was used to docs and talking but there was a block here. I went on the Pill for the heavy flow (and, well, the birth control side) and STILL didn’t speak up about the pain. It helped the flow but not the pain. Eventually the pain became an every day demon instead of a monthly visitor. I finally spoke up when I fell out of my desk chair from the pain. The doc fit me in, my secretary offered to drive but settled for putting me in a cab because I looked like a ghost (hard for an Italian girl!).

As soon as the docs and I talked, I KNEW endo was the culprit. But, since endo diagnosis requires surgery, we did lots of other tests first. Each test (ultrasounds, upper GI, barium enema…) was a roller-coaster. I wanted an ANSWER but feared what it would be. I finally got the laproscopy scheduled and I showed up for my pre-op screening – with walking pneumonia…I guess I’d been toughened…just thought it was allergies. A delay (and a BIG cry in the office women’s room) ensued but eventually the diagnosis was made.

Endo is a tricky beast. I was in a LOT of pain but it was actually a small amount of endo that was the culprit. This is a reality…pain and the amount aren’t always correlated….some women with severe growths never hurt (and only learn of it with fertility troubles), others have a small amount that just hits the wrong spot. The small growths make it tricky- I’ve had three laps to remove tissue but still struggle. I take continuous BCP (no placebo week) and will end up in tears if I somehow miss even one. I’ve had three surgeries for it and wonder if it’ll just be a recurring event. There’s no cure. I appreciated the doc who said “It is likely we’ll never get you pain-free” because it was honest. I learn to deal – the bad days are less often but still bad. I warn people I’ll be snappy when it hurts (my favorite phrase: “it is NOT an excuse, but it IS an explanation”). I’ve faked a phone call on the train to voice the invisible pain and guilt someone into offering a seat.

By far, the best thing I’ve done is live this fight openly. I’ve found other women who can relate. It took my breath away when another woman shared that she also sometimes hoped the pain would notch up JUST a bit because then she’d get to “go away” (not fainting, not sleeping, just the brain letting you leave…). And I hope that I’ve also helped at least one other woman.

A few years ago, I started having a bti of pain I wrote off as gym-soreness but eventually clearly became something else. In an odd way, my severe back pain “cured” the endo for a bit – an 8-level pain in the back beat out the 7 in my pelvic region. And it was oddly comforting to have something we could TREAT rather than just CONTROL. I did all the basic treatments and ended up in surgery on Aug 8, 2011 (spinal fusion). I’m healing from that now.

And it has made me realize a bit more about what makes endo an evil beast. After surgery, the doc (who does a few of these a week) said my disc was among the worst he’d seen in years. And I felt an odd relief – not just because it bodes well for success – but because I felt VALIDATED. My pain was REAL and BAD and I wasn’t a whiny baby. THAT had been an issue in a failed marriage. And THAT is one of the real cruel parts of endo…it is so often written off as minor (“Oh, I get cramps too…sometimes I need TWO Midols…”) or even imagined.

So, MY mission is to tell every woman out there fighting this demon…IT IS REAL.

Cheryl
Pennsylvania
Submitted 9-13-11

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

I had an incredible dream early this morning. My dreams are typically interesting, vivid and in color but on a rare occasion I’ll experience a dream that I know I’ll carry with me for the rest of my life. This particular dream was about fear. I wasn’t running from monsters, death or pain but instead I dreamt of fear as if it was an actual tangible being.

This particular dream began in black and white, and with a great sense of urgency. I was forced to leave a dear friend. I promised her that I’d return, but she was paralyzed with fear that I’d never come back. Time passed and I returned as promised. I opened the door of her home and found her slumped over in a corner with her face to the wall.

The room had become infested with fear. The walls were like catacombs and porous. Fear had embedded itself into each chamber and had grown into the walls. Each cavity contained an amebic shaped being with a haunted face that moaned and wailed. This thing had become part of the walls it lived in and was feeding off my friend like a parasite. I grabbed my emaciated friend in one arm and then wretched each being out of its cell with my other hand. It took all the strength I had to eradicate fear. I carried my friend out of the room, out of the house and into the light. Black and white turned to color and I awoke.

I believe this dream is very symbolic. So often we let fear interfere in our lives. We let it keep us from reaching our goals. We let it keep us from self-actualization. Fear of being hurt … fear of hurting someone else … fear of death … fear of failure … fear of the unknown … fear of the power that’s within each of us. Fear can be everywhere and in everything, if we let it.

Yes, I realize the woman I saved was me.

The attached artwork is my illustration of fear.

Jeannette
Texas
Guest Writer

The informational content of this article is intended to convey general educational
information and should not be relied upon as a substitute for professional healthcare advice.

Before you go running for the antibacterial wipes I just want to let you know that I’m not contagious. What I have is not catching. What I’m about to relay will not travel through your computer’s innards as a deadly Trojan virus or spread through the air like an uncovered sneeze. It’s called stage IV endometriosis and according to the information traffic jam, over 70 million women around the world live with it every day and, I’m guessing another 50 million or so women don’t even know they have it. Those women are probably lying on the bathroom floor right now, gritting their teeth, clutching their wombs while saying, “What the F*ck!?” and praying for the strength to live through the next couple of days.

So what is endometriosis?

I usually tell people, strictly out of exhaustion, that it’s a “girlie” disease. This comes from being raised in a household where you don’t talk about stuff like this. If by some circumstance of extreme horror a particularly cute boy asks, I worry that he thinks I have funky bacteria of the hoo-ha and imagine him running home to Google. A medical professional might say something resembling a foreign language like, “endometriosis is a disease in which the lining of the uterus grows outside of the uterus so that when one menstruates this displaced tissue bleeds as well, but has nowhere to go, thereby causing pain, infertility and various other problems.”

That is, when it’s been diagnosed. Unfortunately there is no diagnosis without actually opening ‘er up and going in by laser, chunky dagger, or perhaps heading up there with an extraordinarily long tube the length and width of an elephant’s trunk. Those of us who have been diagnosed would describe it by asking you to imagine the worst pain you’ve ever felt multiplied by 108. We sufferers would not say, “endometrium lining has moved into our bowels.” We would say, “I think I might [crap] my pants at any moment,” or, “my anus is falling out.” Those of us “blessed” by it would NOT say, “endometriosis causes painful intercourse.” Rather we would calmly ask our partners to “put that thing back immediately,” or say, “I’ve made up the bed in the guest room.”

For me, endometriosis pain is the kind of pain that hunches you over, makes you nauseous, causes sweat to bead on your upper lip, and forces you to bed. Frankly, pain is difficult to describe, and when people ask what it feels like, I tell them to imagine a three inch tall Benihana griddle chef. Yeah, that’s right, and this knife wielding guru is standing there at the prep station in his white toque, with a red kerchief tied around his neck, and he has my ovary, fallopian tube, uterus, pulsating in front of him and he’s poking, stabbing, slicing, dicing, said part before squeezing it dry and placing it on the scalding hot grill where it proceeds to sizzle and pop. To say one suffers from endometriosis is to say “Oh, I stubbed my toe.” So let’s just say I’ve been stubbing my toe for the past twelve years.

Broaching the topic

Before we venture further, I think it’s important to address the fact that few people want to hear that you’re sick, period. It makes people extremely uncomfortable and I’ve seen people act against their normal compassionate nature when talking about illness of any kind. Some folks gloss over it and pretend they didn’t hear you, others rapidly change the subject, and still others will actually cut you off and physically step away. I’ve come to the realization that we’re not so far removed from animals in this regard. Weed out the weakest, the sick, leave them to die, hunt them down and put them out of their misery. Not to mention that our society doesn’t look kindly upon weakness of any kind. So imagine adding the terms: vagina, blood, uterus, and cramps to the equation, you’re pretty much pushing people beyond their limits to cope. It’s better that I don’t say a word, or that I just pretend that I have the H1N1 virus.

I find that most people with disease-riddled organs aren’t keen on talking about them anyway. I know that I’m not constantly talking about my illness either, there aren’t many people who know I have it, and I certainly don’t enjoy sharing the details. Though, with head dipped in shame, I admit that once in a great while it would be nice to have someone understand and listen without performing the fifty mile dash in twenty seconds.

Salt in the gaping wound

With the bitterest of irony all of the fun events in my life seem to fall on the days I’m in the most severe pain. I’ve missed countless birthday parties, concerts, dinners with friends, you name it. “Oh, I’m sorry,” I want to say (but can’t), ”I’m massed up in a ball with a 700 Kelvin heating pad on my shriveled ovary popping a combo of Aleve, Excedrin, and Bayer.” Oh, and that’s right, I said ”ovary,” not ”ovaries.” I’ve already lost one along with what I imagine was quite a beautiful little fallopian tube. I wonder where they are now? Did the nurse flush them like I flushed my first beloved deceased African Dwarf Frog? Were there any words uttered? Or did they end up in a lab somewhere floating in formaldehyde with a bunch of pre-med students sitting around munching bags of Cheetos and analyzing the state of my diseased organs? I can hear the professor now, as she pushes her glasses up past the bridge of her nose, saying, “this specimen belonged to a thirty-year-old Caucasian. Notice the massive amounts of endometriosis covering the ovary. Both the ovary and fallopian tube were encased in a 12 cm cyst and these organs were attached to the patient’s pelvic wall when the cyst ruptured. In other words, what we have class, is a big mess.”

Hope?

All hope is not lost, however, there are options for someone like me. When I lived in Utah (or what I like to call ”The Land of Seven Million Children Riding in Mini-Vans”), I was advised by one family doctor to become pregnant in order to treat my endometriosis. He explained that after giving birth I would need to breast feed in order to continue ceasing my menses, and that if I quickly became pregnant again after my bout of breast feeding, I could continue this cycle of birth, feeding, birth, feeding and, twenty-six children later, I would be in menopause (or the grave), and I would have won my battle with endometriosis (but not my sanity)!

Then there was the doctor at the Cleveland Clinic who did not examine me, but rather stood back and chatted with me as I sat in a crinkled paper robe with a draft tickling my ass. She advised me to take Lupron, explaining that it’s only $500 per month, per shot, and that there is a possibility it may help. She also reassured me that I may gain forty plus pounds, and, as I read about Lupron later while fully clothed, there’s a high probability that it might cause in me a fervent desire to commit suicide.

Another person leavened my hope by telling me I could just have the whole she-bang blown up. Ablation, I think it’s called. Doesn’t that sound awesome? Total annihilation! I imagine it’s like an atomic bomb going off in my uterus, the mushroom cloud billowing and turning everything to dust. I can’t help but wonder where that dust goes. Do they sweep it out before they close you up or does it turn to a mantle of sedentary mud steps leading out of my vagina?

Let’s not forget the beloved hysterectomy – a procedure some two-thirds of the female population undergoes, even when it’s not necessary. Lastly, there are the two laparotomies I’ve already had which, as you can plainly see, did wonders. I’ve convinced myself that cesearan section scars are all the rage during bikini season – and the scarring is totally worth the fact that I was pain free for three whole months.

The creative center?

I do realize that sooner or later something needs to be done and frankly I’m torn. If I go for the Atomic Womb Bomb would they be cremating the center of my creative energy? And since I consider the womb to be the center of creativity will I still be able to write? To create? Or will I be an empty shell that has just obliterated her mojo walking around hollow and listless, not quite a woman?

I’ve resolved myself to the fact that I can’t have kids. This condition’s “symptom” is infertility. I’m fine with that. I’ve just always figured that because God decided I couldn’t create a child He figured He’d give me the ability to create in my writing. I happen to believe that there is a connection between mind, body, and spirit, and ponder whether these organs are vital to my ability to create, to birth my best seller. If I rip them out, blow them up — if I gain forty plus pounds and try to hang myself in my walk-in closet — am I then ripping up the pages I’d write on, blowing up the words inside me that are waiting to be born? And maybe, just maybe, I’m semi-attached to my shriveled lone ovary that works so diligently to keep on trucking those hormones down the line so I don’t become a raving-low-on-estrogen-Converse-wearing-serial-killer.

The latest chapter

Though my decision went unmade and my thought process went on jumbled, I recently went in for a vaginal ultrasound, and a shiny new doctor. One outpatient laparoscopy, a hospital stay, four incisions and the loss of about a Coke can’s worth of blood later, it turned out that my loverly little fallopian tube was the culprit this time – instead of being the size of a string of spaghetti, it was the size of a large naval orange.

I’m tubeless now and coming down from a heavy bout with narcotics (which is another article in itself), but I’m on the mend and praying every day that my spring cleaned uterus and lone right ovary will be enough for me to create.
What do you think? Has your health ever affected your ability to create? How do you make the decision of what to hold on to and what to let go of while still remaining semi-whole?

Melanie Bates
Guest Writer

The informational content of this article is intended to convey general educational
information and should not be relied upon as a substitute for professional healthcare advice.

In 2000, when I was 13 years old, I was running pre-season for cross country…my FIRST year in high school!!! During a practice, I twisted my ankle, but finished the practice before finding the athletic trainer and talking with him. He told me to get an x-ray and stay off of it for a week before trying to run again.

The x-ray came back negative and I began high school on crutches, just as I was told. A week later, the pain was worse, NOT better. I went through a series of MRIs, more x-rays, bone scans, etc. Nothing was coming back with any reason as to why I was in pain. I now felt as though I was on fire, my foot was swollen, and quite discolored.

After about 3 months, my pediatrician ran out of ideas and sent me to a pediatric orthopedic about an hour away. After talking with me, my mom, and looking at my foot for about 5 minutes, he diagnosed me: Reflex Sympathetic Dystrophy. That’s quite a mouthful of jumbled words with ZERO meaning for someone so young. He explained it to me that, yes, I was initially hurt and feeling pain as I should have after twisting my ankle. However, once my ankle healed, my brain was still sending pain signals to my foot, telling me that I was still hurting.

I started seeing a neurologist who had just moved into the state. He had experience working with adults with RSD and was interested to take on a pediatric. I went through months of med changes, epidurals, more meds. I remember VERY little of my freshman year due to the medication I was on.  At one point, I was even using morphine lollipops! My mom, being a teacher, worked with the school to get the accommodations that I needed, including more time to finish assignments and taking exams at home with my mom sitting there with me to make sure I didn’t cheat. I would only be in school a couple of hours a day, for only a couple days a week. I was taken out of school to do water therapy as it was only offered during the school day.

I was sent to Boston Children’s Hospital for a week-long epidural treatment/program. Once the epidural was implanted, I walked with a PT for the first time in MONTHS. I even walked on a treadmill for .5 miles! I was EXHAUSTED after each walk, as I had lost so much muscle mass in my left leg, that I was very weak. However, towards the end of the week, the epidural shifted in my back, and the medication no longer was being sent to my leg. The RSD pains came back full-force. I had been hoping to walk out of that hospital, but instead, I was wheeled out to the car in a hospital wheelchair.

After that, my neurologist told me that the only way I would be able to walk or run again, was to just do it. I began this journey of walking again by standing with my crutches, and just touching my foot to the ground (not even any weight on it), for 10 seconds a day. Then I would put a little weight on it, then I got to the point where I could walk with crutches for a few minutes at a time. It was the most grueling of tasks, but by the end of my freshman year of high school, I was walking again, WITHOUT crutches!

By my junior year, my doctors all agreed that I could try running again. My senior year I ran on my xc team, and finished second for my team at States, and then ran the junior olympics out to New Mexico for Nationals! In college my sophomore year, my friends and I completed a half marathon! I would send my neurologist photos of each race to show him how awesome I was doing!

While training for another half marathon the following Fall, I was doing a fieldwork for a class, and a powered wheelchair ran over my RSD foot and stopped on it. Within 5 hours, I knew that I had relapsed due to the burning pain and sheer agony that I was in. My neurologist took me in the following week, and decided to do sympathetic blocks. Over a few weeks, I had two. With a change in pain meds, combined with the injections, I was back in remission by the time second semester started that year.

I graduated from UNH in 2008 in fantastic health. I got a job working in my field, and was making great new friends, and starting my life! In 2010 I started grad school for OT. This past summer, July 2011, I relapsed again, seemingly out of nowhere! The RSD has quickly spread up to my knee, and I am on a cocktail of medication. My night stand looks like a pharmacy! I have had to make the tough decision to take this Fall semester off from school to focus on my health. I struggled with this decision for a couple of weeks, but my school advisor reminded me: ”you can’t help other people until you help yourself.” Her words are staying with me this week, as classes have begun, and I’ve been home trying to get better, going to PT appointments, and getting my medications changed, yet again!

I’m hopeful that the new treatments that will be starting in the next couple of months will help put me back in remission. Until then, I will keep repeating her words to myself. I can’t be an effective OT if my health is terrible as well. This is the time for me to be selfish, and focus on ME and MY recovery. I think that following those words will help me to become a better OT in the future! Now is the time to help MYSELF, so I can make other people feel better.

It is a fight and a struggle every single day, to walk on a leg that feels as though it is on fire. It is a fight to focus on the end goal, through the haze of my medications. But I’m doing it. I’m fighting RSD back. This monster won’t win against me…I will go into remission again!
(Photo: DANCING down the aisle 9/3/11 in my friends’ wedding. I was in a TON of pain, but it was worth it to be able to celebrate the love of my friends!)

Kerry
Massachusetts
Submitted 9-8-11

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.