Hystorecto(me) - 1 year later

Today marks one year since I had my hysterectomy and partial oopherectomy. The first few months had some hiccups. I've had some endometriosis flare-ups, which have been uncomfortable and have left me looking pregnant for a few days. That's the nature of endo - which will never be fully "gone" from my body.
That being said - I feel amazing! I've started running again. Today I celebrated my hysterectoversary by beating my old record and running my fastest mile to date! (I also credit a friend who suggested I get new shoes that wouldn't make me want to cry after half a mile in.)
I'm so thankful to my friends and family for listening to all my (sometimes graphic) bitching and moaning. My biggest thanks go to my husband, who was and has been so unbelievably supportive and understanding, and believe me, there were times where he certainly could have been irritated with me. There were many times I was irritated with me.
There may be times in the future where more excision surgeries are needed. 20%-30% of women with endometriosis need another excision surgery within 5 years. I'm living in the now, knowing that's a possibility and accepting it as gracefully as I can.
I learned I had big egg-sized cysts on my ovaries March 18, 2017 after running a 5k. I had them removed April 2017, which was the first time I even learned wtf endometriosis was. Since my diagnosis, I've read hundreds of stories from women suffering. All I can think of is how lucky I am.
Fittingly enough, March is endometriosis awareness month. There's not enough research on this disease that affects one in ten women worldwide. 10% of the female population has this, yet it's this big mystery to most of us unless or until we're diagnosed with it.
 Infertility, chronic pain, bloating, painful bowel movements, painful intercourse, fatigue, cramping, anemia, heavy periods and body aches. Consider learning more about it. Consider donating to find a cure. Consider how this disease would affect your life or the life of a woman you love.

#1in10

Short Update

Now that the sting of the setback has cooled, I am feeling... well not necessarily okay about it, but as okay as I can be. I'm back to healing, back to "taking it easy" (right), and back to not feeling like I've been run over and dragged behind a truck. 

In three months, I'll need to go back under general anesthesia to have the stitches removed. So I have that to look forward to(?). Not gonna lie, those few seconds between when they inject you with the sleepy juice and when you conk out are 👌. Obviously the rest of it is less enjoyable, but you gotta look for the good, right?

Without devaluing my own frustrations and feelings, it does help me to remember how fortunate I am when it comes to endometriosis and adenomyosis. I'm a member of several online communities for endo sufferers and there are so many young women who still have dreams of being able to conceive and carry and birth children. For them, a hysterectomy isn't yet an option and so they deal with constant pain, endless doctor visits and a roulette wheel of treatments, all of which are taxing on the mind and body. 

The lack of research done on endometriosis is astonishing, considering its prevalence. Regular, run of the mill gynecologists, much like the one I originally saw, know little to nothing about the treatments available. Going to a specialist for this disease is an absolute must. Unfortunately, healthcare in this country isn't cheap, and specialists can come with a big price tag. Which makes further research and education for doctors and patients all the more important.

So that's that for now. I'm hoping the next time I post I'll be on the other side of this and it will be all rainbows and cupcakes! 

Set Backs

My recovery was going so well. I even had the thought last week that finally - FINALLY - I was done with this whole shitshow of surgeries and doctors and pain.

Thursday was the 8 week post-op milestone in which the hubs and I were once again allowed to have relations. Unfortunately, things didn't go as planned and I ended up back at the doctor Friday morning where I was told there was a "defect" with my vaginal cuff (remember, they removed my cervix during the hysterectomy so everything was sown shut) and it hadn't healed properly in one place. I immediately went downstairs to their surgical center where I was squeezed into the schedule.

*Note: there is no telling what caused the "defect" for sure.

I was given general anesthesia to repair things with non-dissolving stitches that will need to be removed in 3 months. Of course, I understood this would mean more pelvic rest (no heavy lifting, intercourse, etc), but the surgeon never told me a timeline or what to expect recovery-wise.

And of course Saturday morning I slipped on the stairs and hit hard. I've no idea if this impacted the new stitches. I'm uncomfortable and feeling exhausted while I wait for my surgeon to call me and tell me wtf I'm supposed to do.

So I'm just here venting after being told I should blog this because most women don't know enough about their parts, and clearly everyone should know about the many misadventures of my personal parts.

Hystorecto(me)

This post will contain images that some may find graphic or gross. They are from inside of my body or of things formerly inside my body, and they're not nearly as cute as my kids. I'm including them because I think they clearly show what endometriosis is and the havoc it wreaks on women. And my case really wasn't as bad as it gets. Not even close.

Because it's been a while, I'm going to recap what I had going on in parts down under.

In April of 2017 I underwent a cystectomy to remove two cysts from each of my ovaries. What both my regular GYN and I thought to be a clear-cut case turned into a year-long battle that I could never have foreseen. 

The cysts were endometriomas, or, cysts caused by endometriosis. Now I'm going to remind you what endometriosis is:

Every month a woman of reproductive age has hormones that cause endometrial cells to line the uterus in preparation of pregnancy. The lining of cells is what the egg embeds in after fertilization. When pregnancy does not occur, the cells detach and the woman gets her period. In endometriosis, for one reason or another, the endometrial cells have been introduced elsewhere in the body, usually around other organs in the pelvis.

Because of the nature of the cells, hormone stimulation causes them to line whatever area they can reach. This means normally free-floating organs like the ovaries could be attached to the pelvic wall, or intestines could be surrounded and formed together. Sometimes the cells can be found attached to the diaphragm, lungs, even the brain. But almost all cases are focused on the pelvis and surrounding organs.

Symptoms of endometriosis vary. Some women have really heavy and painful periods. Others have constipation, cramping, pain during intercourse, or just overall discomfort.

So now's a good time to bring up that I'd been experiencing some of those very same symptoms for years. For so long that I can't recall when they actually started. I mentioned them once or twice during my annual woman's check up but never pushed for an answer. I chalked it up to all manner of different things, and - maybe because it is such a very personal matter - didn't make too much of a fuss about it.

After my cystectomy, my pain grew worse. What had once been a minor annoyance was now a daily struggle with pain and discomfort. It impacted my life and what I did and how I did it and how much I could do. I found an endometriosis specialist in Rockville and in June had my second laparoscopy. He found some pretty tell-tale signs of endo. My right ovary, ureter and uterus were all "plastered" to my pelvic wall. This is caused by the adhering and then subsequent shedding of endometrial lining.
He separated them and put everything back to rights. He also sent tissue samples to the lab for testing.

Here's the frustrating part - when the results returned there were NO traces of endometriosis. However, because my surgeon had been in there and SEEN the signs, he still diagnosed me, but said he was confident he'd removed it all. Unfortunately, after what is called "excision surgery" there is still a high chance of recurrence.

I'm not sure that's the right word for me, however, as the pain really never went away. It was less debilitating but still pretty constant.

In July I called the surgeon enough times that he ended up giving me his personal cell phone number (his office sucks at getting messages to him in any sort of timely manner). He finally recommends that I get an MRI of my abdomen which could potentially rule out something called adenomyosis, which is endometriosis of the uterine wall. If this isn't the case, the next step is physical therapy for pelvic floor dysfunction.

I get the MRI done the beginning of August. If the thickness of my uterine lining was below 8mm, it's normal. Above 12mm, it's adenomyosis. Mine was 10mm. 😑

I find THE ONLY pelvic floor physical therapist in the town and go to her weekly from the end of August to the beginning of December. Literally no change, but I'm so DONE at this point that I take a break from trying to figure this shit out because I'm just beyond exhausted.

January, I decide to get a colonoscopy because - hey - maybe this is all related to my GI issues instead. Seems unlikely but why not? I did that the end of January and let me just say, not a fan. They find nothing to explain the problems (although they did find something else which, let's just say it's a good thing I didn't wait till I was 50 to get my first one).

I'm frustrated and beginning to feel like this is just going to be my life now. I try to start running in early February and something about that triggered another... idk. Maybe a partial cyst rupture? There were tears.

I am forced to promise to see my surgeon again, and he recommends a hysterectomy, removing my uterus and cervix and leaving my ovaries since I'm 33 and don't wanna do the whole menopause thing just yet and at this point I'm like WHATEVER you gotta do, dude. Seriously. If he'd told me he had to remove my feet to make this all stop I would have been on board.

So the surgery takes place toward the end of March. Prior to this, he has to get a tissue sample of my uterine lining just so he doesn't go in and SURPRISE, cancer or whatever. This is where we learn that my cervix has been completely covered with scar tissue for... who knows how long? I'm certain it wasn't like that in September of 2011 because I had my last baby then but honestly it could have been like that ever since. He has to push through it to get the sample. 0/10 would not recommend.

The day of the surgery arrives and I'm scared to be too optimistic about things. There's also a slight emotional component of "this is what carried my babies safely" and "I'll never commiserate with my girls about periods" but also an excitement of never having to use tampons or pads again. Oh and, you know, the potential of no longer being in pain 24/7.

Doc tells the hubs it'll be an easy surgery - in and out in an hour and a half, tops.

Then he gets his scope in there and is like, oh.

I will just describe what he saw up here, and add the pictures for the curious below.

1. No endometriosis on my liver - YAY!
2. Uhm... holy crap, there is a HUGE cyst in the right ovary. No really, it's as big as the uterus.
3. The uterus is about twice as big as it should be.
4. Endometriosis lesions all over the pelvis.
5. This time the left ovary is attached to the pelvic wall.

He removes the uterus and the right ovary because of the holy wow cyst, takes the cervix and excises the endo lesions. He puts everything else back to rights. 3 hours later, the hubs learns I'm alive and well. I go home, sleep, sleep some more, and do a little more sleeping.

And now I feel phenomenal. I'm 5 weeks out and I got permission to begin running again two weeks ago - and I have! It's not pretty, but it's happening. I feel like I've gotten my life back!

Listen to your gut, guys. Advocate for yourself. And keep pushing. Don't give up.

Okay. Pictures are below.

 Ovary and uterus

 Endo lesion

Left ovary stuck to wall

Endo(and)me-triosis

It's hard to know where to start in this. Do I begin at the diagnosis? At the first sign of symptoms that I ignored for years? Or when the symptoms reached a point where I couldn't ignore them any longer?

First I'll explain what endometriosis is, as I had only a vague idea before being diagnosed.

If you google endometriosis, you'll find the description as "a disorder in which the tissue that usually lines the uterus grows outside the uterus." But what does that actually mean?

Every month a woman of reproductive age has hormones that cause endometrial cells to line the uterus in preparation of pregnancy. The lining of cells is what the egg embeds in after fertilization. When pregnancy does not occur, the cells detach and the woman gets her period. In endometriosis, for one reason or another, the endometrial cells have been introduced elsewhere in the body, usually around other organs in the pelvis.

Because of the nature of the cells, hormone stimulation causes them to line whatever area they can reach. This means normally free-floating organs like the ovaries could be attached to the pelvic wall, or intestines could be surrounded and formed together. Sometimes the cells can be found attached to the diaphragm, lungs, even the brain. But almost all cases are focused on the pelvis and surrounding organs.

Symptoms of endometriosis vary. Some women have really heavy and painful periods. Others have constipation, cramping, pain during intercourse, or just overall discomfort.

My symptoms began years ago, but I ignored them. I was diagnosed with IBS as a teen and most of the symptoms I had were easily explained by that. Until the 5K.

March 18 I started the Lucky Leprechaun 5K. I hadn't run more than two miles in a while, but I was confident I'd be fine. About halfway into the second mile, I started experiencing pain/pressure in my stomach. I chalked it up to needing to go to the bathroom and pushed through. I finished with a terrible time and tried to go to the bathroom with no luck. I drove home, had to take a mid-term on campus, and after another several hours of this horrible pain/pressure, I broke down and went to the ER.

6 hours later I was diagnosed with two cysts on my right ovary, one of which was roughly the size of a chicken egg, and the other about half that size. Best guess was that running caused them to temporarily twist and that caused the pain. I had the cysts removed on April 7th, and from that we learned they were endometriomas, caused by endometriosis.

We won't know the full extent of my diagnosis until I have another laproscopic surgery on June 14. At that point, the specialist will categorize what stage I am at, try to remove the majority of the scarring and endo tissue, heal the lesions caused by the detaching of the endo cells, and remove my fallopian tubes.

In the meantime, I'm uncomfortable. I have some days where I'm totally fine, and others where I can barely think straight. I am literally counting down the days until my next surgery and hoping that this will be the fix I need.

And now for a little fact: 1 in 3 women have endometriosis. And over 40% of them never know. I was diagnosed only because the bouncing of my running caused two organs that had formed together to break apart. It's only in hindsight that I realize I'd been having symptoms for so long and that maybe that could have been avoided. Don't ignore pain because it's embarrassing. 

Advocate for yourself. My regular GYN only had 3 options of treatment for me and only one of them didn't result in me going into menopause at 32 years old. I refused to accept that and found a specialist who is dedicated to treating this surgically and with the hope of stopping any further instances.

The more I've learned about endometriosis the more I realize how very lucky I am. This disease causes infertility, and yet I was able to easily conceive and carry two healthy babies to term. I am on message boards with women world-wide that have been diagnosed and the biggest thing that stands out to me is that I'm the exception and not the rule. Most of these women will never be able to conceive naturally, if at all. Yes, having endometriosis sucks, but I acknowledge that it could suck so so much worse.

The Cry

Yesterday, my sisters and I drove to Washington, DC to march with 500,000 of our fellow nasty women, bad hombres, and people who believe in the power of unity, see the good in diversity, and are just plain fed up with having the rights of the many ignored for the benefit of the few.

This was my very first rally/march/protest experience. I'll admit, I was nervous going into it. I didn't know what to expect. Would it be too crowded? Would there be fights? People shouting insults? Violence?

Getting to our reserved parking space in DC by the Verizon Center in China Town - a mere 3/4 mile from the National Mall - was bananas. Being native to the area, we had opted to drive based on prior experiences with the DC Metro System. While we were right to have done so (lines at the closest station to our houses were three hours long), by all accounts the DC Metro workers handled the crowds with kindness and understanding and were as efficient as they could be, given the circumstances.

We got to our parking space at about 9 AM and went to a nearby Corner Bakery for breakfast. Being so close to the march and with roads already closed to traffic, that poor restaurant had already been put through its paces! Even with the pandemonium of long lines, long wait times, low toilet paper and low available seating, I could tell right away that the general feel of the day was going to be solidarity. 

Women of varying ages and backgrounds exchanged stories of travel and tales of how they got there. I was shocked to learn how many had come from so far away just to march. North Carolina, Texas, Michigan. The lady from North Carolina had gotten on a bus at 3 AM that morning to get there in time. Their drive and dedication impressed me. There were marches in or nearby almost every city in the country, but these women had come here, to the heart of DC. Like me, I think they wanted their cries to be heard by Congress and the White House directly.

When we finished eating, we headed out toward the Mall. 

Immediately we were greeted by thousands of people with signs scrawled with messages of importance. Not all signs covered the same topic. Women's Rights was just one of the many issues this march was about. Black Lives Matter. Pro-Choice. Health Care. LGBT Rights. Planned Parenthood. Diversity = Unity. End Misogyny. Protect the Environment.

The crowd was much too thick to get to the stage where celebrities such as Alicia Keys, Madonna, Ashley Judd, Gloria Steinhem and America Ferrera spoke. After one attempt to move closer, as a group, we opted to roam the Mall. There were so many important messages to see. Like these Buddhist men and women who, after silently walking through masses of people, sat and meditated on the grass of the Mall. 

We saw signs from women describing ways they'd been discriminated against throughout the years. One I remember in particular stated she was fired from her job in the eighties because she'd refused to sleep with her boss. 

Occasionally a loud cry would ring out and, like a wave, would grow closer and closer to us and we'd find ourselves, too, shouting out loud. Presumably, it would begin with what someone on the stage had said. Though none of us could hear from where we stood, the sentiment was felt and expressed. We were here and we would make our voices heard. The sound would echo throughout the city, ringing off the walls of these great, historical buildings seeped with tales of all the protests and marches and rallies that had come before this one. It was awe-inspiring, energizing and comforting.

Much like those mighty cries, an emotion would wash over me in waves, leaving me momentarily breathless and bringing tears to my eyes. It wasn't sadness, it wasn't anger, it wasn't pain. It was relief. 

For the first time since November 9th, 2016, I didn't feel so alone. For the first time since November 9th, 2016, I didn't feel so hopeless. For the first time since November 9th, 2016, I believed that we could do something; that we could fight for the things they were trying to take from us; that our voices would be heard.

Among all the heartfelt, ooey-gooey sappiness, we found humor. Hand-knit uterus hats, a man dancing as a unicorn, hilarious signs, and some genius people who taped "Russian Voting Booth" on several of the porta-potties. This wasn't angry women whining about oppression. It wasn't "down with the man!" or "fight the power!" It was men and women showing one another, telling one another that they weren't alone. That we were awake, we were watching, we were listening, and we were going to be okay. 

Don't booby trap my uterus.

Queef on him.

Eat pussy, don't grab it.

All that twitters is not gold.

We got lunch, being savvy locals(ish), we ate at the cafe of a less popular museum not on the mall. Even in there, Our numbers were strong. I've never been so happy to be in long lines as I was yesterday, and that's a fact. The longer the bathroom lines, the more people were there to make our presence known. 

Walking back out onto the streets, we were again overtaken with awe. The numbers had nearly doubled.

I have never seen this many people in one place in my entire life. I knew then that we were making history. 

Again, I feel I need to emphasize that every single person was happy. The feeling of the crowd was positive. There was no impatience, no urgency, no frustration. We were all pleased to be there; all happy to still live in a country that this was legal. Yes, it was crowded as hell. No, I couldn't move if I wanted to. And it was wonderful!

The march started and we joined up, quickly being swept up in the masses. 

I am one. We are many.

We chanted with the people. "Show me what democracy looks like! This is what democracy looks like!" My favorite being, "We want a leader, not a creepy tweeter!" The wave of that wonderful cheer would move over us, sometimes beginning at the front and moving back, sometimes coming from the back and moving up the front.
When we reached the Washington Monument, we decided to separate from the group - a process that ended up taking well over 30 minutes to move about 20 yards. Again, it was amazing. I would happily extract myself from that same crowd a thousand times over if it meant drawing attention to all the reasons we were there again.
At the base of the monument, I got my first clear look at the full extent of the march.

You can see the White House between two groups of trees here toward the center.

Just look at all the crazy, glorious, strong people!

Even after the march, the streets were teaming with people. I have no idea what time it actually ended, but we headed back to the car around 5 PM. On that walk back, the cry would sound out and we would shout back. I know we were heard.
In the end, we made over 18,000 steps, walked 7 miles, climbed 20 flights of stairs and brought hope back to hundreds of thousands of Americans.
If you're feeling like I was, hopeless and alone, try to imagine the cry. I know if I need it, it will carry me through darker times than we're facing now. We will be heard. We won't be silent any longer.

Why

Two days ago, my faith in humanity was shaken to the core. The entire time Trump was running for president all I could think was, "There is no way anyone is gonna elect this asshole." I think a lot of us thought this. So much so that I really never even considered the possibility that people would. And when people did... I have no words to describe the emotion I felt at that moment. When I woke up and logged onto facebook, my entire feed was filled with worry, sadness, anger, shock... and gloating. So much tactless, rude, unbelievably prejudiced gloating.

After I unfriended a person or two, I lashed out with something along the lines of "If this is what America wants then we deserve the bad shit that's gonna happen." Not my finest moment and not, exactly, what I was really going for. But in that moment I felt so betrayed by my fellow Americans and so disgusted at the lack of empathy they seemed to have for one another.

I feel the need to explain myself. First off, let me say that I don't hate all people who voted Trump. There were two people running who both had a long list of negatives and a short list of positives. As most elections go, one represented one side of a lot of core issues and one represented the other. Naturally those with more conservative values are going to choose the side that fits with those values. Unfortunately for America, Trump most closely represented that. So again, I don't hate. But... Trump also represents a side of America that should not exist. Whether intentionally or not, he has given voice to the bigots of the country.

The racists who were once too cowardly to publicly act are now emboldened by the President-elect's words that he will build a wall and deport and watch people based on the color of their skin or the religion they follow. The idea that this group of people are now brave enough to display their true feelings of hate has my stomach churning. It's not that I'm anti-Trump (although, in all honesty, he is not even a little bit what I want for a leader), it's that I'm anti-hate. One might even say that I hate hate. Hate divides and by now Americans should know better: Together we are strong.

Already I've heard of derogatory comments being said to non-white people. Violence and harassment against minorities has increased. The confederate flag (another example of something that has been taken and used for bigots as a way to display their hatred) has made a resurgence among teenagers - kids too young and stupid to really understand what it is they're saying, only thinking it "funny" or appropriate based off how they were raised. Reports of random strangers trying to remove hijabs from Muslim women, people being beaten for no reason other than they look or speak differently.

The violence goes both ways. A white man in NYC was beaten for voting for Trump by two black men. It's no excuse, but I do think the motive of that beating was fear. Spurred by the hate and vitriol spewed by Trump and his supporters, I can only imagine the worry and fear felt by minorities.

As a woman and the mother of two young girls, I can say that the comments Trump has made about women has me fearful that sexism will also grow stronger and more prevalent. That rape and sexual harassment will become an even bigger problem than it already is.

I hope that I'm wrong. I hope my fears will go unrealized and that, just maybe, the Trump administration will surprise me. I won't say things like "he's not my president," because that's the same crap people pulled with Obama and it pissed me off. He is my president (or will be). The country chose him and I must come to terms with it and continue to do my part in society. I'll tolerate the changes in policy and grin and bear whatever other alterations he makes to our country - hoping all the while that they're temporary. But I will never tolerate hate.

And now here are some cute animals.