“I was walking with a ghost. No matter which way you go, no matter which way you stay. You’re out of my mind”

Does anyone know that Tegan and Sara song? I love them. Way more than I probably have any reason to.

ANYWAY,

I’ve had about a million hot flashes in the past week.

It’s so freaking uncomfortable. Guhhhhhhhhh.

But more than the hot flashes, the past week has held some new challenges.

My mind has seemed like it’s not my own, not really. I’ve found myself so scatterbrained, so forgetful, so ditzy and forgetful… did I say forgetful already? I can’t remember. I’ve been so forgetful.

But more than that, I’ve been fighting this growing wave deep inside my heart. It feels like I’m using my bare hands to hold back a tsunami… But I CAN’T bring myself to let it crash. Because my conscious mind knows that there really isn’t anything wrong.

I’ve gritted my teeth and forced the stinging behind my eyes to retreat, for no other reason than I know I haven’t any reason to cry.

I’m not sad. Nothing sad is happening. I’m not lonely or disapointed. I know that the urge to cry, the feeling of sadness is being caused by the disruption to my body’s natural chemistry.

I’m beginning to long for the day when my hormones will be my own again. It is my hope that my decision to not get a second injection means that the remainder of this monthly dose will run its course and be out of my system in a few weeks.

But apparently, with Lupron, there’s no telling.

I’ve definitely managed to maintain as much of a positive attitude in the past week as is possible. That being said, I haven’t done a dedicated “this is me moving my body to increase my fitness” thing. I mean, I’ve been up, walked a lot at work, and walked some this weekend while shopping… (like when I got to my car after walking while shopping for over an hour, by leg muscles were actually twitching-whoa.) So, I guess that’s as much evidence as I could possibly need to convince me that truly, honestly, sincerely, I’ve been completely laid up for a good long while… Since before thanksgiving.

So, I plan to continue to increase my weekly walking, and before too long hopefully up the ante. For those wondering there’s no reason I couldn’t jog right now, except that it hurts the incision sites still. I have pretty intense pain at the main incision site if it gets moved too much. I’ve jogged in place a couple times, and its really painful.

Anyway, I’m still here, one step at a time, and I know that I just need to get through this period with as much patience and kindness as I can manage for myself.

So, the drug which prevents me from generating or utilizing estrogen caused me worry from the start.

I’m someone who has more than a few “hippy” tendencies and ideals. I try to live an environmentally friendly life. I prefer to use sustainable resources, and I like to minimize any impact on my body that is chemical or artificial.

The idea of entering a medically induced state of menopause, maybe 20 years early made me leery from the start. Aside from any of the potential side effects of the drug (and there are MANY), just the idea of forcing my body to do something that isn’t natural caused me a great deal of stress.

When the doctor discussed the drug with me, I was instantly anxious. It didn’t feel right to me.

Arguments that, “all medications are unnatural” or “every action you take every day has risks” didn’t offer me any comfort.

To complicate things further, I experience this horrible disease over and over, and what if this drug would allow my body to actually have reprieve?

I looked into this drug, and searched and searched to try and find out how other people’s experiences with this drug have gone; and over, and over, and over again… all I found were these horrible experiences.

And I’m not talking about the menopausal symptoms. Honestly, in this first month, none of the menopausal symptoms I’ve experienced have been deal breakers. Don’t get me wrong. Hot flashes suck. And feeling fuzzy headed isn’t the most appealing way to go through the day, but I could deal.

However, as the date for my second injection draws nearer, I continued to try and find people who had success with this drug…

Instead, all I found were people, hundreds and thousands of testimonies online of how this drug (or at least they believe it was caused by this drug) side effects like severe depression, and a complete alteration of personality traits, all manner of diseases and complications like blood disorders, weight gain, and cancer just to name a few.

There are warning groups about this drug.

I’ve had strangers contact me and say, “STAY AWAY FROM THIS DRUG. IT WILL RUIN YOUR LIFE. WHEN YOU’RE DONE, YOU’LL WISH YOU STILL JUST HAD ENDO”

Sheesh.

It was scary.

But what if those problems only occur in 3% of users??

What if those people didn’t do something right, or there was some other kind of reason.

But the more I asked, and I did present these concerns to my doctor (who I do trust, by the way) the more I realized that they just don’t have answers for my questions.

The long term effects of  the use of this drug for endometriosis just haven’t been studied. Or if it has, I certainly can’t get my hands on the data.

And on top of all that, I still have this nagging, gnawing feeling that it’s just the opposite of “ME” to put my body into menopause against it’s natural clock.

I heard rebuttals of, “Well, going on birth control to modify hormones and control periods isn’t normal either.”

You’re right. Which is part of why I’ve adamantly refused to take hormonal BC for years. I’m just not down with it. For exactly the same reasons.

I’m so horrible at making decisions. HORRIBLE. I can vacillate for WEEKS on an issue.

I’d been back and forth a hundred times since before I even had surgery, and just couldn’t decide if I wanted to do the Lupron therapy. Doc asked me to just give it a try for a month. And I agreed.

But the thing is, this first few weeks of the treatment haven’t been that bad. There haven’t been any horrible, unbearable side effects… But that STILL doesn’t mean that it’s a drug that I’m comfortable taking.

And I guess, I’ve decided that I’m not.

Not comfortable taking it after all.

I guess I reached the critical turning point when I realized that during my winter break, I had two weeks to be social and hanging out with all of the people I don’t get to see much when school is in session. I usually spend my break having lunch dates and coffees, and catching up with people. Being social. Being out. Being in town.

Being Me.

On the last day of break, I realized that I’d spent the ENTIRE break on the couch.

I’d ignored invitations from friends for coffee. I’d ignored lunch dates.

I’d been a reclusive, melancholy, tired, probably at least moderately depressed, lazy lump of a girl for two weeks.

Nothing made me want to get up or outside, and nothing made me really smile or laugh, or be excited. (Save my sweet hilarious husband, who can always make me grin.)

I think THAT was the thing that I couldn’t accept.

I’ll take the hot flashes.

I’ll take the risk of other complications.

But to take away my optimism. To take away my gregariousness… that’s something I just can’t accept.

It’s who I am.

It is the CRUX of my personality.

Having this drug in my system for a few weeks took a bit of the liveliness from my heart, and combine that with the gut feeling of hesitation… I just had to decide not to continue the therapy.

Is this risky? Am I going to make my disease worse?

Well, here’s the thing.

With estrogen in my system, the endometrial cells (or adnomeiosis cells within the uterine walls themselves-which are not removable via surgery) will continue to be fueled.

But it is my hope that the cells which my doctor WAS able to remove will lessen the pain I experience month-to-month. At least for a while.

And it is my hope that instead of altering the fundamental hormone of womanhood for 30 days a month, 365 days a year, I can use pain medication, and pain management techniques to manage the intense pain 3-5 days out of the month instead.

I may need to have another surgery at some point in the future, or I may have to go back on this therapy in the future, and I know that is possible.

But here, and now, I know that it isn’t the path I’m choosing to take. I just know it.

And I’m choosing to trust my gut on this one.

So, there probably won’t be too many reports on menopause after another month or so… but I will certainly be writing about my continual experience with this disease…

Anyone who’s actually read all of this, well, I don’t even know what to say. Just “thanks” I guess.  

<3

168 months.

I experienced crippling, life-interferring, fainting at the mall, up all night sobbing, want to DIE pain for approximately the last 168 months of my life. Some months were better than others. Some months were almost more than I could bear. It was unrelenting.

I can’t put into words how horrible and disheartening it’s felt to be told by doctors that “everyone is uncomfortable during periods” or to have peers look at me with disbelief and a “suck it up” look on their face.

A few months ago, around 2:30 in the morning, when I stumbled upon the truth about endometriosis, the symptoms, and the likelihood that this disease- undiagnosed by any of the several providers I’d seen since puberty began- was the source of my continual pain and problems, I wept.

I cried for hours.

I cried while reading the symptoms. I cried while reading the statistics. I cried when I started reading the stories of women like me who had suffered with out help, without a diagnosis for YEARS, and sometimes DECADES before the right doctor told them about this disease and helped them take the next steps. That night I read a statistic somewhere that said that, on average, women with endometriosis suffer for 12 years before getting treatment.

I was over that average.

That night, I became determined to find a doctor who cared about this disease. Because, unfortunately, the big business is birthing babies, not pelvic pain… frankly, most doctors just don’t keep up with their endo studies. And that’s a shame.

…

Who wants to talk about hot flashes?!

The pain of endo is caused because these cells, which grow all over places they don’t belong (including on intestines, fallopian tubes, ovaries, appendices, just to name a few) are highly responsive to hormones. In the presences of the hormones by body produces naturally, these cells react (usually during a woman’s cycle) and become painful.

While excising the cells, and removing what can be seen through laparoscopic surgery is a way to remove some of the problem, it doesn’t SOLVE the WHOLE problem.

Much like when cancer cells are removed, and chemo/radiation treatment is used to ensure that any cells that are left behind are extinguished, cutting edge endometriosis treatment has another step too.

By taking the drug, Lupron, my hormones are stopped, which will hopefully cause any remaining endometriosis to keel over and die… or at least shrink…

But, for those of you keeping score, if my hormones are taken out of the picture, that means that I’m entering a medicinally induced state of menopause.

Of course, the perks of that could include an absence of the excruciating, and chronic pain that has plagued me for the last 14 years.  The downside is… FREAKING MENOPAUSE! Hot flashes, mood swings, bone loss… oh my.

I find it pretty hilarious that yesterday, I blogged about all of this nonsense, and that very night, I had my first hot flash.

Ohmygod. It felt like I was a pot of water and someone had turned the burner to high. It crept up before I even realized it, and all I could do was RIP my sweater off as fast as I could and grab my sweet Spanish fan.

Honestly, I laughed. I laughed a lot… because it’s funny, I guess. Being suddenly slammed with this radiating heat!? Out of nowhere, wanting to hurl the cats to the opposite side of the room like little furry footballs, because their cuddling just contributed to your sudden skin melting temperature change…

Hahahaaaa. Anyway,

I hope this post wasn’t too alienating. Anyone stick with me through this one?  I hope so.