The Endo Nation
I created this blog to reach out and share my personal experience and treatments that I use—including the hysterectomy surgery that I had got. Additionally, this blog is for those have not had surgery before for these symptoms.
Disclaimer: While I am not a doctor nor do I choose to be one, this is not a cure-all for this medical issue and everyone's body is built differently, this may or may not work for everybody.
I have been suffering from endometriosis since my late 20s/early 30s. Before the "Evil E" hit me sideways, I used to be driven, determined, willing to push myself--drinking coffee, latte, five hour energy etc. burning the midnight oil getting things done, i.e chores, homework, etc. until I crashed across the couch--out cold for hours! I experienced the symptoms when I had pelvic pain, spasms, numbness and chills while making bowel movements. Overtime, it had gotten to the point where I gotten so desperate that I took birth control pills--thinking it would solve the problem--wrong answer, it didn't! It made matters worse! I had headaches, eating uncontrollably--gaining as much weight as when I first started losing weight. I wasn't able to lift anything heavy--at the maximum, anything over 1lb.--much less have ability to do any strenuous work/tasks! Additionally, the first few days of my cycle, I was useless to the point where I could barely move around and was so bloated that my stomach looked like a beach ball for the first three to four days and was bedridden--using heating pads, pain meds--such as Naproxen, Midol, Excedrin--which did not make a dent. Additionally, the issues overlapped into my ability to do everyday tasks such as conducting business, house chores, exercising, etc. To make matters worse there were certain people--such as family members, random people who did not understand what I felt and "it's all nothing but an excuse" to them, or making condescending comments like "you're lazy and irresponsible," "Don't be stupid!", or "Stop making excuses," etc.--while LITERALLY not being able walk--much less putting one foot in front of the other and not able to eat solid food for 4-5 days maximum.
For those of you out there who feel like the invasion of the body snatchers took the real you and replaced them with someone that was depressed, frustrated, thinking self-destructive thoughts, dreading things like getting tasks done, participating in events, running errands, and conducting business while someone is jumping up and down your throat telling you things like, "It's not that hard...just get it done," I totally understand.
A few years ago, I spoke with a friend of a family who is a nutritionist that steered me in the right direction. He made suggestions to take herbs like Maca Root, Dong Quai, probiotics, scale back on the caffeine--coffee, chocolate, and to stay hydrated and all of that good stuff. After suffering needlessly, I realized I should have told him sooner versus taking a birth control pill with the consequences involved.
In 2020, when the COVID-19 pandemic started, I fell off the wagon, eating the wrong foods and other things I had no business eating caused me to relapse. The episode that I had was in June of this previous year, in 2021, the pain was excruciating and debilitating to the point that it lasted 5 HOURS LONG and almost costed me my class in the Spring Quarter of last year! To make a long story short, my mom and I were relentlessly researching information such as herbs, treatment, therapy, etc. to remedy this issue that has been crippling me for the past 5-6 years.
Fast-forwarding to 2023, the endometriosis advanced to the point where it was unbearable. Every time my cycle starts, my stomach starts inflating to the point I could not walk, been bedridden and had sleep sitting for 3 to 4 days, and on my smartwatch my oxygen dropped to 70-79%. At that point, Mom and I finally looked up an OB/GYN, and at that time, we were shopping for medical insurance for me, and finally got it, and my grandmother is helping pay for it until I am able either get employment or whichever comes first.
To make a long story short we saw the first doctor, and order an ultrasound to find out what is going on that when we found out the results from ultrasound from the first doctor, I had chocolate cysts, there were masses at the size of 8.75x 5.31x 6.08 cm3--5cm fibroid, complex cyst on the right side of my ovary with a size of 4.66x and on the left ovary there was a complex syst with a size of 4.66x 4.14 x 3.5cm3 and simple follicle around the same area—1.76cm—show endometrioma. Basically, I needed to get a hysterectomy.
When my medical insurance kicked in we found that the doctor that we initially went to was out of network so we spoke to one of closest family members in my father’s side and she referred me to an OB/GYN that was in network with my insurance to get a second opinion to find out what my options were because I was convinced not to get a hysterectomy for the sake of possibly having children, so I was like “Okay, I won’t get it.” So we went to the doctor that our family member referred us to, and looked over the records that was from the doctor that originally diagnosed me with the endometriosis, and referred me to an OB/GYN surgeon who is the best, and she looked over the notes from both original doctor and the doctor that was referred from the family member, and set up the surgery for the myomectomy and cystoscopy.
So she performed the surgery on December 1, 2023, and she mentioned that when they opened me up, my insides looked like a bomb went off and she had “beat up” my ovaries so it won’t wake full-throttle with a period. Additionally, there was a debate between the nurses on whether or not at that time to do the hysterectomy because it looked that bad—which explained the excruciating pain.
After going to the Post-Op appointment, they sent me back to the referred doctor for hormonal treatment and prescribed me the Junel and what I didn’t realize. In January 2024, the period started and this time it was menstrual pain and super heavy bleeding so I went to my doctor that same month and put me on the Orilissa—paired with Junel—which has shut down the period for the past few months. Then April came along the period started back up, and this time it did not stop so we went to the doctor and she increased the dosage for the Orilissa from 150mg once a day to 200mg twice daily, and I was still bleeding so she prescribed the Norethindrone 5mg and the Lupron shot—which seemed to work that day and then hours later, I was bleeding again, and this all doctors’ offices were closed so I spoke to that nurse on the after-hours line and I explained to her what happened she to hurry and go to ER. When I went to the ER, they did the blood work where it showed “normal” and discharged me that night with prescription of Percocet. I made an emergency appointment and explained to her that I went to the hospital because the bleeding did not stop. After explaining the situation that took place, she mentioned, “We need to pair the Junel with the Norethindrone with the Lupron, because we have to shut down the endometriosis.” So they did, and so months later, while taking the Lupron shot with the other two medications, I started experience the adverse effects which were weight gain, unstable emotions—such as anger and suicidal thoughts. At that point and time, I putted my foot and said, “I can’t take this anymore!” I was in a very dark place and reverted back original—which is to get the hysterectomy done with the surgeon that perform the myomectomy and cystoscopy.
So at that time, over a week later in December 2024 since my hysterectomy that was done on the 20th of December, I felt a lot better. In the meantime, I will keep you posted with my progress.
Feel free to follow me on my blog and leave your comments. In the meantime, I will keep you updated on my post. Please keep in mind that it is not written in stone for there are individuals with different types. Also, I have a YouTube channel in working progress.
