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