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endometriosis

Oh No! It’s Endo!

I normally shy away from getting super personal, but after a lot of thought and years of rolling it around in my mind, I figured I would share my story of dealing with Endometriosis.  Mainly because it’s a terrible condition that 11% of women suffer from, but it’s still not talked about enough- because, you know, periods are still a taboo topic in modern society. This leads to misdiagnosis, shame, and infertility.  I should know, because I got all three.  I figure if I can get even one young woman diagnosed and save her from what I went through, then this overshare is totally worth it!

First off, what is Endometriosis? Here’s the definition via The Mayo Clinic: “Endometriosis (en-doe-me-tree-O-sis) is an often painful disorder in which tissue similar to the tissue that normally lines the inside of your uterus — the endometrium — grows outside your uterus. Endometriosis most commonly involves your ovaries, fallopian tubes and the tissue lining your pelvis.”  So, basically, you have extra gunk growing in your uterus and when it’s that time of the month, it sheds with everything else, often causing extreme pain.  I mean, debilitating “I think my uterus is trying to murder me” pain. It can also cause adhesions, scarring, and is the leading cause of infertility, because all that fun stuff damages your eggs. Fun fact: You are born with the amount of eggs you have for life, so it’s not like you can generate new ones.  Kind of a flaw in the system if you ask me.

I honestly didn’t even know what Endo was until I was 27.  I started having really bad periods in my early twenties, and was a little concerned, because they started out of nowhere. I asked my doctor, and he said “It’s normal- try Midol”. Yeah, that doesn’t work, but ok.  When I was 24, I got really sick one night on my period and my husband took me to the hospital at Fort Stewart, GA.  I was almost delusional with pain, dizzy, had to leave work, etc.  I was told by the doctor there that I had “Dysmenorrhea” AKA “Painful Periods” (No, really? Thanks, doc.) and was told to take a Ibuprofen and get over it.  I felt so ashamed leaving the hospital, because I felt like I was being a drama queen and was making a big deal about nothing.  So I suffered for another three years until one day after my period started, I was in so much pain on my way to work, I literally almost had a wreck on I95 because I couldn’t concentrate on driving- AFTER taking four Ibuprofens that morning.  I also bled right through my pads twice that week within an hour each, staining the chair at work.  Fed up, I went to a different doctor, who told me I may have something called Endometriosis.  The problem is, the only way to diagnose it is with laparoscopic surgery -where they stick a little tube in your abdomen and diagnose and cut out tissue.  So, they did the surgery, and BINGO! Endo everywhere AND my tubes were wrapped up in scar tissue. They cleaned it out, and I got pregnant for the first time the next Spring, only to have a miscarriage three weeks later.  I figured I could easily get pregnant again. HA! Yeah, not so much.  And to make matters worse, Endo comes back. It’s like Kudzu in the South- just grows over EVERYTHING and you can’t kill it.

Uterine Kudzu. I like that.  Maybe that should go in a medical journal?

 

Since Endo comes back, I had four more surgeries to clean out the Endo and adhesions until the doctor said I could have no more.  Because, every time you have a surgery, you get MORE scar tissue. The last Laparoscopy I had, my bowels were glued to my pelvic wall by adhesions, and at this point the only way to cure it all is just have a full hysterectomy- where they take out the uterus. The problem is, I wanted a child.  You kind of need a uterus for that I hear.  And one of the only things you can do to relieve the pain is birth control.  So, I got to be on hella pain medication a few days a month because Ibuprofen and Midol is absolute crap.  Do you know how hard it is to get decent medicine to treat chronic pain?  Oh my gosh, they treat you like you are a drug addict. To be fair, there IS an opioid crisis in our country, but that really puts people like me- who have severe chronic pain- in a terrible position.  The only way to function with Stage 4 Endo is medication or Hysterectomy. This is the choice we get.  And you get shamed for both.  So, yeah, it’s been a super fun 11 years dealing with this!

One of the hardest parts – aside from severe pain- is the absolute shame that comes with it.  I would be working, and the pain would hit, and I couldn’t tell anyone.  Imagine trying to be live on the air while having a knife slice through your abdomen and you have to smile through it, because you don’t want to tell people what is wrong with you. Or be in a meeting with a bunch of men, and trying not to pass out.  It’s an embarrassing condition to have, as menstruation is still such a taboo topic. So many times, I had to cancel plans with friends due to the pain, and let’s not get started on the bloat! I looked like I was pregnant at times, because my stomach would swell so badly! But what do you tell people?  No one wants to hear about it or talk about it because it’s “gross”.  Ok, it is gross, but what the hell are we supposed to do about it?  And then there’s the infertility.  I was unable to conceive again, and it was heartbreaking. We tried everything we could, and kind of kept it to ourselves, save close family and friends.  So this led to the constant question: “When are you having kids?”  Or “Why don’t you want kids?” Or just the speculation- so many friends would tell me I was too skinny, worked out too much, drank too much wine (lies) or was too stressed… and I didn’t want to tell them the truth, because it was embarrassing.  Oh! And then all the friends that sell stuff on Facebook, like essential oils and isometrics or whatever would target me and tell me their stupid product would get me pregnant! I kid you not.  Please, if you have an infertile friend, just…don’t.  The only thing you can do is to feed them wine and tell them they’re pretty.  That always helps!

I know this is a long post, but it’s something I’ve been dealing with and finally felt like sharing.  The great news is, I am FINALLY pregnant- 21 weeks right now- after IVF (In Vitro Fertilization) earlier this year.  For me, it was the only way I could ever procreate on my own due to endometriosis damaging my eggs. It’s an extremely expensive and physically/emotionally draining procedure- but it’s worth it!  But I would like to keep other women from having to go through what I went through.  I’m 38, and at the end of my reproductive years.  Had more been known about this condition when I was younger, or less shame involved with women’s cycles, perhaps I would have been more of an advocate for myself and my reproductive health. Maybe I would have frozen my eggs like so many are doing these days! It was never an option given to me 5-10 years ago.

Here are some symptoms of Endo. I had them all.

If you are a woman, and you are having severe period pain, don’t be ashamed. Get to your doctor NOW and see if you can get a diagnosis.  Don’t be shamed into thinking you’re a wimp.  You’re totally not. The pain is ridiculous, and no woman should ever have to go through it on just Midol.  The medical community needs to step up and do better.  You deserve it!