#ElvesHaveEndo

[elfpuddle]

I’ve was diagnosed with Rheumatoid Arthritis at two. I did not know it was an autoimmune disorder until I was in my late thirties. My periods were always weirder than everyone else’s. I learned in my thirties that I had fibroids, endometriosis and PCOS. I learned in my forties that those were also autoimmune disorders, like the eczema and psoriasis I’ve had since puberty. I wish I’d known to ask questions and get help. I wish I’d known something was wrong.

I wish they taught a class on what being a normal human is like

Like, the normal amount of pain is zero. The normal amount of wishing you weren't ever born is zero. Food isn't supposed to itch or hurt*. Going numb (any time outside sitting in one position too long) isn't normal. Passing out isn't normal. Normal people take like 10-20 minutes to fall asleep, and sleep like 6-9 hours. You're supposed to get one period a month, which is manageable with a few tampons or pads a day and lasts 3-6 days.

These are all things I had to find out later, like a moron.

(fibromyalgia, depression, allergies, cataplexy, narcolepsy, PCOS and endometriosis)

*spicy food is supposed to hurt?

[elfpuddle]

Speaking of Infertility...

TMI warning: This is a rambling post about my infertility and the specifics of my period and cycle. If that bothers you, go away.

Nobody actually enjoys getting her period, unless she thinks she could be pregnant and doesn’t want to be; and then really it’s more of a relief than enjoyment.

Yesterday was cycle day one. (For those of you that don’t chart, that means it was the first full day of my period.) (Hey, why don’t you chart?) I started bleeding Tuesday evening. No, not spotting, full on light bleeding.

I have Polycystic Ovary Syndrome (read more here: http://www.webmd.com/women/tc/polycystic-ovary-syndrome-pcos-topic-overview), I have fibroids (read more here: http://www.mayoclinic.org/diseases-conditions/uterine-fibroids/symptoms-causes/dxc-20212514 ) *and* and I have endometriosis (read more about that here: http://www.webmd.com/women/endometriosis/ss/slideshow-endometriosis-overview). My husband and I are trying to conceive, and have been trying for years.

This July will be our fourth anniversary, and I turned forty-five last month. You can do the math, #ImmortalElvesAreOld. We got pregnant on our honeymoon, and miscarried our baby five weeks later. We haven’t been pregnant since. (And the age and timing is a rant for another time.)

Nor am I starting menopause, though the gyn I had at the time BabyElfTMC died thought so. Yes, my periods are heavy and irregular. No, it isn’t menopause; it’s the PCOS and endo. My periods have not changed – they’ve been heavy and irregular since they began some thirty-two years ago.

“Heavy”. Yes. I wear a size 2 Lunette cup (sorry for the long links; I’m on my phone: https://www.lunette.com/) *and* reusable pads. I woke up at 5:40 this morning because my underwear and jammies were soaked in blood. (I seem to have missed the sheets, so that’s a blessing. I hate it when that happens.) This happens at least once a cycle, every cycle. Always. I can honestly and without exaggeration say that physically, my periods are exactly like a first-trimester miscarriage. That’s what happens when you have excessive lining all over your uterus. I once passed a two-inch-long fibroid and didn’t notice until it didn’t show up on the next ultrasound–it just detached and fell off. The gyn (same one as above), said that I must not know what I was talking about. No, my periods are just that intense. She said the cramping, at least, would have been intense and I would have noticed. Yeah, well the cramping is always that intense, so… I’m so glad I found a new gyn who not only knows her stuff (she’s a national speaker on fertility issues), but actually listens to her patients!

So, now it’s nearly seven in morning, and I’m lying on the couch after changing my jammies, starting laundry, and taking some meds. My alarm will go off at 7:15 so that I can spend the day at VBS. Specifically, in Adoration, where I’m not supposed to leave the Blessed Sacrament alone. Which means no bathroom breaks if someone else isn’t in the room with me. And I need to go empty my cup again, because it’s going to overflow. It’s been an hour since I emptied it last.

Don’t take this to mean that the cup isn’t worth the money, or that reusables suck. I once bled through a super plus tampon in the time it took to walk from the toilet to the shower and turn on the water. Reusables have saved me thousands of dollars in the last five years, and I wish, for the sake of landfills and my wallet, that I’d found them thirty or more years ago.

I wish that I’d started charting then, too.

Honestly, I wish a lot of things related to my menstrual cycle.

Thank you for reading this far. If you would spare a prayer for me today, out of your mercy and kindness, I’d appreciate it.

I don’t often complain about anything–it doesn’t help–but between the pain, the hormones, and the depression of not being pregnant again, I needed to vent.

There over one hundred campers at the VBS I’m volunteering at. I’m a family sim without children. Nobody enjoys getting her period; but it’s especially hard for the infertile.

[elfpuddle]

Current Mood

Spiked Nutella Hot Chocolate

[elfpuddle]

And this is why I went reusable.

I once went through two boxes of Tampax super-plus in two days.

I went through one super-plus in the time it took to walk from the toilet into the shower.

[elfpuddle]

We lost our baby five weeks after conception.

If I had a penny for every time I heard, or had, a story like this, I'd have the financial freedom to ensure it never happened to anyone again.

People, it's simple...

BE KIND

and

ACT LIKE ALL LIFE IS IMPORTANT

even if you disagree, because, truthfully, you don't have to agree with someone to acknowledge that they are hurting!

Toxic pro-choice culture is:

A client of mine’s daughter had pregnancy complications and ended up miscarrying in the hospital. When she was discharged, heartbroken, she and her husband were leaving to begin to make plans for a little funeral when one of the hospital staff stopped them and said “here it is,” handing them a brown paper lunchbag with the body in it, and walked off without any kind or consoling words. Striken by the indignity of it, left without instructions, and still recovering, they didn’t know what else to do except take it home and put it in their refridgerator so that it wouldn’t decay as fast while they tried to make funeral arraingements.

Can you imagine the horror? You just unexpectedly lost your child, and it’s body is handed to you in a rude sack, leaving you with no other options except to keep it in your fridge?

And my client, as she was telling me this traumatic story, tearing up herself because she shared her daughter’s grief and loved the grandbaby that didn’t make it, thought she needed to emphasize to me how much of a loss it was because “it was a wanted baby.”

The pro-choice culture where I live is so vulgar and prominant that hospitals toss the remains of your unborn child to you as if it was nothing, and a greiving grandmother feels like she has to justify her sorrow by clarifying that it was a “wanted” child, to not go against the culture of “it’s perfectly fine to abort your pregnancy if you don’t want a baby!” But there is no difference between an unborn child who is wanted and one who is not. They are the same from every biological and moral standpoint.

It’s simply alien how much more acceptable it is to talk about supporting abortion rights than grieving the death of a “wanted” unborn child. In their hearts they know the dichotomy, but it isn’t okay to try to address it and solve it, since pro-choice is the only acceptable stance to most people.

[elfpuddle]

I was going to just reply, but then I thought about everyone who might need to see this....

I have endo. I also have fibroids and PCOS. The first time I saw a doctor about my pain, my horribly awful periods, or anything like it, I was 33, and my period had lasted for 30 days.

And the doc put me on the pill for 30 days and never checked for a cause.

I was 41, neely married, and having a miscarriage when I learned I had PCOS.

I was 43 when a doctor went over my chart with me and told me everything.

And because I waited so long, I was past the point of treating everything in a non-invasive way.

I wish I'd seen a doc in my teens.

Go. If you think something is wrong, see a doctor. And if you aren't listened to, or are only offered the pill, see a different one.

Please!

When 50% of you thinks you have endo but the other 50% of you just cannot bear going to a doctor just to tell you “well we didn’t find anything, I guess you’re just a weakling with low pain tolerance, all other women feel this and get on with their lives”