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.