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.
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
