An Endo Primer or Why Endometriosis Awareness is Necessary

Let's assume that you're in pain.  You're absolutely miserable.  If someone asks you about that pain scale where zero is no pain and ten is the worst pain you've ever had, you'll tell them you're at about a six or seven on the daily.  You'd go to the doctor, right?  (Assume that you're in a position where you're able to afford and go to the doctor in this scenario.  If you're not, that's an entire other kettle of awful fish.)

So you make your appointment and you go in.  You're told that the pain will probably go away if you take this other medication, so come back in a week or two.  You take the meds, and nope.  Still so bad you end up going to the hospital's emergency room.  The pain's still so bad you faint and vomit on a regular basis.  The emergency room says there's nothing they can do, and to wait for your doctor's appointment.  So you go back to the doctor, expecting them to have some sort of action plan.  They tell you that there's nothing they can do specifically, that you will always have this pain, and that a pain clinic is all you can hope for.

Depressing, huh.  That's my life.  I've been told this by four separate gynecologists about my endometriosis.  Endometriosis (or endo for short) is a disease wherein the lining of the uterus appears outside the uterus, most commonly in the abdomen.  Now, menses isn't "normal" blood.  Menses is meant to help a fertilized egg implant in the uterus, meant to cushion an embryo and foster life.  It's tacky.  It behaves differently.  And if it's free floating in your abdomen, it's going to attach to parts of you.  At this point, it can make parts of you attach to other parts of you.  

That shit hurts.  It hurts a lot.  I'm one of the unfortunate people that has pain around the clock, 24/7/365.  Some people only have this pain around their menstrual cycle.  This pain isn't something that'll just go away if you take Motrin (no matter what previous doctors have told me).  I've taken as much as 800mg of ibuprofen every four hours to no effect.  Menstrual cycles can be affected by this too.  A lot of people have longer cycles with endo.  Personally, I tend to bleed for about 14 days on average when I have my period. There's also problems with bowels, nausea and/or vomiting, pain with sex, and infertility to contend with.  (I tick every endo box.  Lucky me.)

Endo can only definitively be diagnosed through laparoscopic surgery.  Sometimes a doctor will suspect that you have it because of an MRI or CT scan or pelvic exam, but the only way to determine with 100% certainty is through a laparoscopic surgery.  During the surgery a biopsy will happen, and checking those cells is how one determines if one has endo.

How is endo treated?  Right now, the "gold standard" is excision surgery.  This is done laparoscopically and involves the surgeon cutting out the endometrial lesions deeper than other extraction methods.  If you've ever had a mole removed, it's similar to that; in addition to removing the surface tissue, the layers beneath must be removed as well because they're also part of the problem.  There's only one problem with this.

Endo isn't well known.

There is an average of a ten year delay in diagnosis of endo in women who have the disease.  (And it is a disease - there is no cure.)  Personally, I've had every symptom since I was fourteen, and was only diagnosed at thirty-four.  Every doctor I've ever had said I'd either grow out of it or was overreacting.  I've been called hysterical, a faker, told I have IBS, told that a different birth control pill would fix it, told to just suck it up and deal because women are supposed to be in pain sometimes.  All of that is bullshit.  

Unfortunately, finding a doctor who is knowledgeable and won't do any of this crap is difficult.  Because the disease isn't well known, most gynecologists aren't prepared to deal with endo patients.  We get pushed to pain clinics, to other gynos, to surgeons, to ERs.  To date, I've had seven surgeries, been to the ER hundreds of times, been to at least thirty gynos, and I'm still in pain on the daily.  My last gyno saw me twice and didn't look at any of my records, didn't do a pelvic, didn't ask me how much pain I was in: he just prescribed a different birth control pill and told me to go to a pain clinic.

Birth control is an important tool in the toolbelt to help maintain symptoms at a certain manageable level.  After excision surgery, a doctor can use hormonal BC to keep the endo from coming back as quickly.  But it will come back.  It's a disease.  There's no cure.

But there damn well should be.

Sources:
http://www.endofound.org/endometriosis
http://www.mayoclinic.org/diseases-conditions/endometriosis/basics/definition/con-20013968
http://www.womenshealth.gov/publications/our-publications/fact-sheet/endometriosis.html

You Took Everything

When I was in my twenties, before endo really got its grips on me, I had sex.  A lot.  All the time.  I was a slut, something I'm unrepentant about now in my mid-thirties.  If anything, I miss those times.

See, I haven't had sex in almost eight years.

Not because I don't want it, or because I suddenly grew another head.  But because it hurts.  Penetration hurts, so forget that.  Clitoral stimulation is fine until I approach orgasm, at which point it feels like I'm being ripped in two.  Why should orgasms hurt me so badly I burst into tears every single time?  And why haven't any of my doctors treated this like a problem?  I bring it up, but I get told it'll sort itself out.  Well, it hasn't.  I used to masturbate a few times a week.  Now, I'm lucky if I do it once a month, and I have to take painkillers and cry myself to sleep afterward.

I feel like I'm being punished for having a libido, for wanting to do something that's a simple biological function, something that should be a joy.  Something I used to love.

Thank you for taking that away from me too, endo.

Insomnia

I've never slept normally.  I can't blame my insomnia on endometriosis; I've never had a good night's sleep like a normal person, even when I was a child.  But now that my nights are pain blue, aching grey - now I do blame them on my illness.

Right now: my head hurts because I'm coming down with yet another cold (endometriosis is theorized to be an autoimmune disease, and there's been some correlation between it and poor immune system function that's being researched).  My pelvis feels like my intestines are being slowly tugged through my belly button.  My hip is on fire.  My back has been on fire all day.  I want to sleep, but I don't.

Not just because of pain, but also because of fear.  I'm so scared I won't find a job.  I'm so scared that if I do find a job, I won't keep it long because I'm so ill.  I'm scared I'll never get better and lose the friends and family I've managed to retain through fighting tooth and nail.

I'm exhausted.  But I can't sleep. 

So Sick of Being Sick

I had my first ovarian cyst when I was fourteen.  Like, I got my period when I was thirteen, and then it just ... didn't stop until I was fourteen.  Then one day I came home from school and started throwing up every five minutes.  I went to the ER, they found out I had a cyst that was going gangrenous on my left ovary.  I went from the girl who'd never even held hands to the girl who'd had three pelvic examinations in one day.  I had my first surgery then, and the day after was put on hormonal birth control.  I was told I'd never have children.

Since then, I've always had painful periods.  I'm not talking "take some Midol and get over it" periods.  I'm talking throwing up.  Fainting.  Going to the hospital gritting my teeth and biting my lip bloody because I am going to scream if I don't periods.  This is my norm.  This has always been my norm.  I was told all through my teens and early twenties that this was what all women went through.  I was told that I was overreacting.  I was also told that yes, it sucked that I got ovarian cysts about the size of a grapefruit on my left ovaryevery other month, and that it probably did hurt when they ruptured.  (Cysts are frequent among those with endometriosis.)  I was told I might have PCOS (polycystic ovarian syndrome) and that the only treatment for that was - you guessed it, the pill.

Doctors only really started listening to me in my late twenties.  When I was twenty-eight I moved to Houston, and over the course of two years, I had two grapefruit sized cysts on my left ovary removed.  That means I was having surgery annually.  After the first surgery, the doctor said that he "saw some endometrial lesions" but they were too close to my ureter and he "wasn't confident touching them".  But he also said they probably wouldn't hurt.  That they would be okay, because I was on the pill.  He also said he wouldn't take out my ovary.  I found another gyno.  He took out my left ovary and fallopian tube, but also said that endo shouldn't be an issue.  I was on the pill!

Right.

In 2013, I was hospitalized twice.  I was in the ER, writhing with pain, fainting with it, seven times.  SEVEN.  I also think I gave up hope then.  In a desparate bid to have a better life, I moved to Chicago with my BFF.  I'm happier here, but no less ill.  So, here's the part you probably know about.  I was hospitalized in June, and the doctor that saw me said that he was pretty sure it was endo.  He referred me to a pelvic pain specialist.  We'll call him Dick.  Dick prescribed me nerve drugs, muscle relaxants, and to lose weight.  He said that yeah, it was probably endo, but all that stuff would help.  I'm sure you can guess what happened.  It didn't help.  The nerve drugs made me incontinent, and I was still in pain.  Only now I was in pain and leaking.  Also, I don't eat a lot on any given day anyway because pain makes me nauseated.  Plus, it's super hard to exercise and do yoga and all the lovely things he wanted me to do when I'm curled up in a ball with a heating pad.

So I went to get a second opinion.  This doctor is a wonderful person.  She's kind, and she was smart enough to realize that nobody had gotten a 100% definitive diagnosis of me having endometriosis.  So she did surgery.  This is what I had a month and a half ago.  She found endometriosis.  She found that it was creating adhesions - essentially, since the endometrial tissue has nowhere to go, it makes this thick, sorta ropey, almost scar looking tissue.  My uterus was fused to my colon.  I don't know how to express how scary that is.  Maybe caps will help.  MY UTERUS WAS FUSED TO MY COLON.  So much for the pill controlling things, right?

But here's the kicker - my pain never stopped.  So I asked second opinion doctor what to do, and she recommended that I go back to Dr. Dick.  So, I did.  That's when he told me that if I didn't trust him and got a second opinion, nothing with him was going to work, that if I'd "stuck to the plan" I'd be fine, that if I lost weight, my endo would go away.  (Fun fact, endo is an immune disorder, it can happen in people of any weight.  I'm not opposed to getting in better shape, but losing or reducing my pain would be great.)

So, here I am.  Still in pain, and hoping that my next doctor will actually help.  Because my pain never stopped.  MY PAIN NEVER STOPPED.  I can't think of a month where I've been totally pain free since I was twelve.  I'm thirty-four.  Twenty-two years of this shit.  And endo is a progressive disease.  It will only get worse.  It has been getting worse.  It's absoblutely terrifying to be given Percocet for pain and have it not even touch it.  It's terrifying to need Dillaudid in high doses every two hours in order to be comfortable.  I don't even bother with Advil or Tylenol anymore because I'm sure my liver and stomach are pretty important to being alive.  (One day, I was really hurting and had to go to work, so I took eight.  Nothing.  It was like taking Tic-Tacs to combat pain.)

I've lost every job I've ever had (and most of them I was good at, and a couple I even enjoyed) to this illness.  No employer wants to hear that you have to work from home two weeks of every month.  I'm looking into jobs I can do from home.  Or disability.  But really, I just want respite.  From the pain, from feeling like a burden, from being scared that tomorrow will be worse

Don't Cry

I love my family, I really do.  We're pretty close, or so I'd like to think.  But none of them really "get" my body, my life, my dysfunctional reproductive organs.  I think that's something every woman with endometriosis goes through.  Nobody seems to think it's "that bad" - unless they have it, or have seen you go through it.

My mother came from a home where her father was an ex-Marine and her mother cleaned houses her whole life.  Aches and pains were the status quo.  You took some Tylenol, shut up, and went on with your day.  Unless you had a fever over 102, a broken bone, bleeding that couldn't be stopped with super glue or a bandage, or were vomiting more than three times, you didn't go to the doctor.  

When I had my first ovarian cyst at thirteen, it went gangrenous due to having twisted upon itself.  I threw up every five minutes on the dot and got so pale and dehydrated my gums were a greyish blue.  Even then, my mom took me to my GP first instead of the hospital, following his advice for another six hours until she took me to the emergency room.  I didn't blame her for this - the GP actually wanted to wait longer for me to go to the ER.  (He thought it was a touch of the stomach flu.  Mom says he had a touch of the fucking stupid.)

In college, when I fainted walking from class to class, I'd just drink some water and "walk it off".  When I had ruptured ovarian cysts, I'd take ten Advil and lay in bed and cry.  I thought I was lazy.  That normal people didn't have these problems.  That if I tried really hard, someday I wouldn't be in constant pain.  That I wouldn't be fat.  That I wouldn't be afraid to move, afraid to go out for fear I'd be in pain and pass out, or get the crippling stomach pain that so often comes with endo.  Of course, I didn't know I had endometriosis or polycystic ovarian syndrome at the time.  I wouldn't be diagnosed with that until I was twenty-eight.  

There are days where I don't have to take painkillers, though they are few and far between.  I'm lucky enough where traditional Chinese medicine (acupuncture, herbs) has alleviated the stomach symptoms that are so often bros with endometriosis, that show up and hang out to add to the pain party.  But there are days like today, where it feels like someone's got a hold of my guts and is trying to rip them out of my belly button - that I want to weep at my work desk.

But I don't.  I don't ever cry when I'm in pain.  I've been in ERs where I've passed out on my way in the door, where I've been sheet white and writhing - and I don't cry.  I may whimper on occasion.  I mumble to myself, phrases that mean something at the time.  I rock back and forth.  I ball my hands into fists so hard I draw blood.  But I don't cry.

I feel guilty, but I rarely shed tears.

An Introdcution

I kind of feel like I should hand you all a bowl of popcorn because this story is long and ridiculous. It's kind of like The Hobbit, only with a lot less Ian McKellan.

ANYWAY. I'm Sarah, and I don't think I've had a single day where my female reproductive organs were active and NOT pissing me off. I got my period one day in summer when I was thirteen years old. And it just ... didn't stop. For the first year of my menstruating life, I bled for 25 days out of thirty. It was ridiculous, and led to me having anemia and needing fluids almost all the time. My well meaning GP at the time said my body was just "adjusting". Flash forward to September when I'm fourteen. I go to school, I come home, I have a snack. I'd been in pain all day, but that was ALREADY THE NORM for me. 

But this was different. I threw up, and ended up throwing up every ten minutes or so that whole night. The GP thought it was the flu, but my mom took me to the hospital. At fourteen, I ended up having my first ultrasound and my first pelvic. It ended up I had eight cysts on my left ovary, one that was grapefruit sized and had gone gangrenous. I had that out and was put on the pill. I'm still on the pill (not that specific one), but that's another story.

And the blood stopped. But the pain ... never really did. Once a year, I'd snap and I wouldn't be able to take it anymore and I'd go to the hospital. Most of the time I'd have a cyst that had ruptured to go along with my pain, but when I complained it was constant, year round, they said it was probably in my head. That went on for years. I remember fainting in an undergrad class from the pain, I remember flunking out of school because I was so exhausted and in so much pain I just couldn't. I remember taking a whole bottle of Advil in a week (one of the 200 count ones!) because dear god, nothing helped the pain.

And then, one day when I was twenty-nine, I went in for my fourth ovarian cyst removal lap surgery. When I woke up, and was wheeled to my recovery room, I was told the cyst was gone, and I had endometriosis. Then I was given some pretty pictures and sent home. The doctor told me that it would make my cramps worse. That's it.

I ended up having to do a lot of research on endo myself. I've had my appendix out because I had to go to the ER for endo pain and was told that it was probably my appendix. (I figured hell, either way, it's not like I need the appendix, may as well be safe. It wasn't infected.) I've been in the hospital for weeks while doctors did CT after CT thinking it was gallstones. Colonoscopies - it must be IBS. Benzies - it must be all in my head. I had a doctor tell me to my face that there was no way it could hurt this bad, that I was being a hysterical woman and my mother would be ashamed. (I may have told that man I'd sue him. I didn't, but I don't regret it.)

And now here we are. I'll be 34 in five days, and I'm still in pain more often than not. It's better than it used to be - acupuncture and TCM seems to actually work for me somewhat - but I'm still trying to find a gyno that can do a lap and excise this newest round of lesions. I'm sick of gynos saying that I should just "wait and see" with the pill. I've been on my current pill since 2006, I think I've been waiting a while.

I'm just ... really tired, I guess.