Endometriosis Awareness Month (+1 day)
So apparently there is a global pandemic going on and there no other sicknesses, diseases or disorders anymore. I even forgot for 30 of 31 days of March that I had planned to put up a post about my experience with endometriosis for Endometriosis Awareness Month since September!
So, forgive me while I take a few minutes to talk about something other than the pandemic virus that has us all locked in our homes. Something that I've been dealing with for 20 years in one form or another. Something that didn't just happen, take the world by storm, or for which has had scientists and doctors working around the clock to find a cure and a vaccine. Something that actually affects 1 in 10 women and takes in many cases over a decade to diagnose.....
When I was in high school I had a very irregular and painful period. I would get an extremely heavy period for 12 full days but then not get a period for 36-42 days. During this time, not surprisingly, I was also anemic and therefore was tired often and would get dizzy. Because of my experience, I tend to look at my students with the "seriously" eye-roll when they try to get out of doing ENGLISH work because they have their periods since I basically had to wear a diaper that I changed hourly and I don't think I ever missed a day of school for it (nowadays, it seems like students miss school for paper cuts---but I digress). By the time I was 16 or 17, I was on birth control to regulate my bleeding, years before I would need it for its intended purpose.
The birth control pill I was on changed a few times between high school and being a functioning adult but I did find one that seemed to work perfectly for me for nearly a decade-- like my periods on it, my moods and energy levels were regular, I didn't have break outs on my face or breakthrough bleeding when I wasn't supposed to be menstruating. Everything seemed under control until I went to live abroad.
When I arrived in Colombia in 2017, I had a 6 month supply of my birth control because as you probably know, birth control is still regulated for some bizarre reason in the states so I needed to go to my gynecologist to get a prescription but the six months didn't carry me through my first 6 months in Cartagena. Not being a doctor and not finding any pharmacy that carried a pill with same composition, I thought any birth control would probably have to do and I got the same pill all my friends take here, "Minipill Suave".... it was so not the same! I became sad and depressed and my sex drive started to take a hit, so I went off the pill all together, figuring it was only a couple of months until I would be able to visit my gyno in NY/Planned Parenthood and get my prescription filled. My mood improved and so did my sex drive but I started to have pain during sex and random times where I'd get a shooting paid in my right lower abdomen up to my bellybutton.
I went to the doctor and had blood tests, everything was fine. I went to a gastroenterologist and had a colonoscopy, all clear. I had ultrasounds, transvaginal ultrasounds, CT scans. The only thing they found was that I did have an ovarian cyst the size of a mandarin orange on my ovary. My partner decided we needed to name this enemy to our sex life, so we named it Cystilia. After a few months, I got her checked again and she did shrink and eventually disappear but the pain wasn't completely gone, it would come and go with varying degrees of intensity.
The time passed and I went home, got my prescription filled and expected things to go back to normal, but it didn't. It was like a foreign object had taken root in my lower abdomen and while I wanted to have sex, it was still painful and the pains in my sides seemed to become worse and more frequent. I would be running on the treadmill or cycling on the bike in the gym and I had to stop, I'd stretch, try to hydrate some more and continue, but I couldn't, the intensity never lessened. I couldn't even sleep on my right side anymore.
Finally I went back to a local gynecologist (I've had three since living in Cartagena) who spoke English and was able to tell me that he thought I might have Endometriosis but that he couldn't be certain until they performed a laparoscopic surgery. I looked up the surgery and the downtime and decided it could wait.
A few months later, I visited my family again in NY for my mom's birthday. On the morning of her birthday, my mother was awakened by me asking her if she could take me to the hospital. The pains in my side were so intense and focused right beside my bellybutton that Dr. Google thought it could be appendicitis. I had been up since 4 A.M. trying to wait it out, to see if maybe I just needed to go to the bathroom... but by 7 A.M., I heard my mother awake and entered her room to ruin her birthday with what I thought could be a rupturing appendix. Once again, they did all the blood tests, scans and something like $7,000 later, were sure that I did not have appendicitis but thought I might have Endometriosis.
I finally scheduled the surgery. I had a different surgeon from the doctor who initially told me I probably had Endo and the surgery was in the smallest women's hospital ever. I was scared because there weren't any English speakers and had a bilingual coworker with me whom has now seen me at my most vulnerable -- ass out in a hospital gown! I sat in a small waiting room hearing a woman giving birth just behind the wall my chair was up against, me and my coworkers holding hands and breathing like we were in the room with her and yelling, "si te puedes!!!". It was a moment for sure. When my doctor came in, I had my list of questions that I asked and then they came to prep me for my surgery.
After a couple of hours I woke up from my surgery feeling like someone used my stomach as their own personal punching bag. I was bloated and my bellybutton was covered up and I had these three other holes, one to the left of my navel and then one on either side above my hip bones. Moving sucked, even breathing didn't feel good (but apparently is necessary). I was also REALLY F-ING HUNGRY. I got home and stayed on the couch for two weeks with the exception of short daily walks around the apartment, halls and building just to help the surgical gas deplete from my body.
At my follow-up appointment with my doctor I found out that I had stage 4 endometriosis, which means that there were adhesions all over my reproductive organ as well as my bowels and large endometrial cysts on my ovaries which were removed with the endometrial excision. Additionally, the scar tissue from the adhesions caused a tilt in my uterus, which is why sex had become painful. It was a weird mix of feelings since it meant that the pain wasn't in my head, I wasn't making it up, I wasn't (in this particular case) a hypochondriac, I was a person with a confirmed diagnosis! It was a sad sense of justice when I thought about the one male gynecologist who suggested it was normal and I should just take some Advil (when I had already been taking 3 every morning).
It's 6 months later and the pain in my side is gone. I'm on a new pill which seems to lower my testosterone, which means that my sex drive is still sort of low and my uterus is still tilted, which is limiting. I've added high testosterone foods to my diet as I don't want to be taking testosterone replacement pills and I do exercises that may help to temporarily tilt my uterus back in the right direction. It's been a journey and 20-40% of women who have the surgery I had have recurrence within 5 year... It's also likely that if I did want to have biological children, I wouldn't be able to (luckily, my family dynamic proves that biology or not, I can and will be a mother someday, genes be damned!).
I know it's not a life threatening disease, nobody needs to stay away from a person with Endo for fear of it spreading, but it is real and if you have pain and irregular menstruation, you should seek help. Get second and third opinions. Seek out a nutritionist or an endocrinologist, try the natural route, but don't expect it just to go away. Here is one quick resource that I found helpful as well.
So, forgive me while I take a few minutes to talk about something other than the pandemic virus that has us all locked in our homes. Something that I've been dealing with for 20 years in one form or another. Something that didn't just happen, take the world by storm, or for which has had scientists and doctors working around the clock to find a cure and a vaccine. Something that actually affects 1 in 10 women and takes in many cases over a decade to diagnose.....
When I was in high school I had a very irregular and painful period. I would get an extremely heavy period for 12 full days but then not get a period for 36-42 days. During this time, not surprisingly, I was also anemic and therefore was tired often and would get dizzy. Because of my experience, I tend to look at my students with the "seriously" eye-roll when they try to get out of doing ENGLISH work because they have their periods since I basically had to wear a diaper that I changed hourly and I don't think I ever missed a day of school for it (nowadays, it seems like students miss school for paper cuts---but I digress). By the time I was 16 or 17, I was on birth control to regulate my bleeding, years before I would need it for its intended purpose.
The birth control pill I was on changed a few times between high school and being a functioning adult but I did find one that seemed to work perfectly for me for nearly a decade-- like my periods on it, my moods and energy levels were regular, I didn't have break outs on my face or breakthrough bleeding when I wasn't supposed to be menstruating. Everything seemed under control until I went to live abroad.
When I arrived in Colombia in 2017, I had a 6 month supply of my birth control because as you probably know, birth control is still regulated for some bizarre reason in the states so I needed to go to my gynecologist to get a prescription but the six months didn't carry me through my first 6 months in Cartagena. Not being a doctor and not finding any pharmacy that carried a pill with same composition, I thought any birth control would probably have to do and I got the same pill all my friends take here, "Minipill Suave".... it was so not the same! I became sad and depressed and my sex drive started to take a hit, so I went off the pill all together, figuring it was only a couple of months until I would be able to visit my gyno in NY/Planned Parenthood and get my prescription filled. My mood improved and so did my sex drive but I started to have pain during sex and random times where I'd get a shooting paid in my right lower abdomen up to my bellybutton.
I went to the doctor and had blood tests, everything was fine. I went to a gastroenterologist and had a colonoscopy, all clear. I had ultrasounds, transvaginal ultrasounds, CT scans. The only thing they found was that I did have an ovarian cyst the size of a mandarin orange on my ovary. My partner decided we needed to name this enemy to our sex life, so we named it Cystilia. After a few months, I got her checked again and she did shrink and eventually disappear but the pain wasn't completely gone, it would come and go with varying degrees of intensity.
The time passed and I went home, got my prescription filled and expected things to go back to normal, but it didn't. It was like a foreign object had taken root in my lower abdomen and while I wanted to have sex, it was still painful and the pains in my sides seemed to become worse and more frequent. I would be running on the treadmill or cycling on the bike in the gym and I had to stop, I'd stretch, try to hydrate some more and continue, but I couldn't, the intensity never lessened. I couldn't even sleep on my right side anymore.
Finally I went back to a local gynecologist (I've had three since living in Cartagena) who spoke English and was able to tell me that he thought I might have Endometriosis but that he couldn't be certain until they performed a laparoscopic surgery. I looked up the surgery and the downtime and decided it could wait.
A few months later, I visited my family again in NY for my mom's birthday. On the morning of her birthday, my mother was awakened by me asking her if she could take me to the hospital. The pains in my side were so intense and focused right beside my bellybutton that Dr. Google thought it could be appendicitis. I had been up since 4 A.M. trying to wait it out, to see if maybe I just needed to go to the bathroom... but by 7 A.M., I heard my mother awake and entered her room to ruin her birthday with what I thought could be a rupturing appendix. Once again, they did all the blood tests, scans and something like $7,000 later, were sure that I did not have appendicitis but thought I might have Endometriosis.
I finally scheduled the surgery. I had a different surgeon from the doctor who initially told me I probably had Endo and the surgery was in the smallest women's hospital ever. I was scared because there weren't any English speakers and had a bilingual coworker with me whom has now seen me at my most vulnerable -- ass out in a hospital gown! I sat in a small waiting room hearing a woman giving birth just behind the wall my chair was up against, me and my coworkers holding hands and breathing like we were in the room with her and yelling, "si te puedes!!!". It was a moment for sure. When my doctor came in, I had my list of questions that I asked and then they came to prep me for my surgery.
After a couple of hours I woke up from my surgery feeling like someone used my stomach as their own personal punching bag. I was bloated and my bellybutton was covered up and I had these three other holes, one to the left of my navel and then one on either side above my hip bones. Moving sucked, even breathing didn't feel good (but apparently is necessary). I was also REALLY F-ING HUNGRY. I got home and stayed on the couch for two weeks with the exception of short daily walks around the apartment, halls and building just to help the surgical gas deplete from my body.
At my follow-up appointment with my doctor I found out that I had stage 4 endometriosis, which means that there were adhesions all over my reproductive organ as well as my bowels and large endometrial cysts on my ovaries which were removed with the endometrial excision. Additionally, the scar tissue from the adhesions caused a tilt in my uterus, which is why sex had become painful. It was a weird mix of feelings since it meant that the pain wasn't in my head, I wasn't making it up, I wasn't (in this particular case) a hypochondriac, I was a person with a confirmed diagnosis! It was a sad sense of justice when I thought about the one male gynecologist who suggested it was normal and I should just take some Advil (when I had already been taking 3 every morning).
It's 6 months later and the pain in my side is gone. I'm on a new pill which seems to lower my testosterone, which means that my sex drive is still sort of low and my uterus is still tilted, which is limiting. I've added high testosterone foods to my diet as I don't want to be taking testosterone replacement pills and I do exercises that may help to temporarily tilt my uterus back in the right direction. It's been a journey and 20-40% of women who have the surgery I had have recurrence within 5 year... It's also likely that if I did want to have biological children, I wouldn't be able to (luckily, my family dynamic proves that biology or not, I can and will be a mother someday, genes be damned!).
I know it's not a life threatening disease, nobody needs to stay away from a person with Endo for fear of it spreading, but it is real and if you have pain and irregular menstruation, you should seek help. Get second and third opinions. Seek out a nutritionist or an endocrinologist, try the natural route, but don't expect it just to go away. Here is one quick resource that I found helpful as well.
As the sedative kicks in.... oh hey!
my bloated, hole-filled stomach. I also have a picture of my now mutilated belly-button but decided to refrain from making you barf.
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