Seeing as it's Endometriosis Awareness Month I will take you back to where it all began for me and why awareness is more than a month, it's 365 days a year for me.
I was 11/12 when I first started my period. All I know is that I was very young and I remember sitting on the toilet freaking out because I was alone and my mom was out walking the dog and I did not want to move because I didn't know what was happening. I went to Catholic school so they didn't get into the real deal about periods so I was a bit freaked out. I now transitioned to become a woman or whatever they say when you get your period back then. My periods were like an out of body experience for me because the pain was indescribable and unbearable. The only thing that helped with the pain was to sit still or rock back and forth on my bed. It wasn't until I was about 15 when my pediatrician put me on birth control pills because it's normal for this pain and it only happens once a month for a week. Well, I bled longer than a week and the pain continued, I went from various types of birth control to midol to naproxen. There was a time when I was 16 when my pediatrician said that I was mental. I didn't even know that until years later when I was getting my medical records and reviewing them I saw her notations.
High School was a constant blur for me, when I did go. I was never on time and I was always late because the pain was so bad in the morning my stomach hurt all the time. That's when the doctor said I had IBS and I was lactose intolerant, which now I know wasn't the case but it was funny because I could eat ice cream like a champ but yet the doctor just knew better I guess. Come time for my senior year I almost did not graduate because I had more absences than actually being in school, and I passed literally by the grace of the good lord.
After high school I found an OBGYN because I thought I was a little too old to be seeing a pediatrician. So I found an office downtown and met with my first doctor who played the birth control game except this time she made me go on a continuous birth control pill which she said you won't get your period. Two months into it I had my period for almost a month. It wasn't until she became frustrated that she insisted I have ablation for suspected endo. Endo what? well she never got into details about endo but she said I would feel a whole lot better. Surgery happened and I felt better for all of two months. The pain came back to the point where I was getting dizzy and wanted to pass out. There were days that I spent in bed because I didn't want to move because if I did move i'd have pain. The doctor told me there wasn't much more she could do but there is this drug called lupron and the only thing is you would have to take vitamins with it because some of her patients had some 'minor' side effects with it. What she didn't say is that some of these side effects were hair falling out, teeth falling out, joint pain, migraines, etc... (I did my research on lupron after her talk). She wrote me a prescription for it and told me to write the date on it when I was ready for it. That was the last time I saw her.
I found yet another doctor, this time in Boston. I thought all would be well because it was in a center for infertility. We played yet again the birth control bingo, then she suggested to take a surgical look inside for endometriosis and place an IUD in surgically. Her plan seemed okay so I went again for surgery. She mentioned that I would not bleed with an IUD and the pain wouldn't be too bad. Well, that was temporary yet again. Atleast this time the doctor gave me a stage for endo and it was stage IV, which in the endo world you could have just as much pain in stage I as you do in Stage IV. So like clockwork, this doctor pushed lupron as well. And like clockwork I walked out frustrated again.
From the age of 12 until my second surgery at 23/24 I went through 4/5 doctors and 1 therapist. I then turned to social media in frustration and that's when I learned the difference between ablation and excision. My first two surgeries were ablation where they burn the tissues, and what I didn't realize at the time is when you burn something it comes back and heals. That is what the uneducated doctors did to me.
It wasn't until my mid twenties that I found a doctor that took the time to listen and actually knew what he was talking about. I had a 7 hour excision surgery with him, and unfortunately the pain did return but it was already mentioned prior that if the pain did return it was due to suspected adenomyosis which is endo inside the uterus. I had my hysterectomy about a year after my excision surgery.
Two years later, I ended up having another excision surgery because my ureter was bent like a swans neck and embedded in the disease, this was done by another excision surgeon which I do not regret but just wished the guy had a little more bedside manner.
Now here I am working on a three day flare up, last night I almost passed out in pain, and I am awaiting my next excision, the choice was not easy and my doctor told me it was my only option at this point because we tried everything. I know deep down that if I didn't have two ablation surgeries and just had excision the first time that I wouldn't be where I am now. This was no fault of my own but the fault of two doctors that were uneducated. I never would've thought that I'd be facing this all over again at 33. My body is failing me yet again but my mind is a lot stronger than it has been in the past. To live in a body that is constantly trying to bring you down is mentally exhausting.
To have people judge you because you are sick, and to have people not take the time out to understand is draining for sure. There is no magic cure or potion for this disease. It can be invading one organ or some other organ, or it could just be sitting somewhere else. The only way to get rid of it is to cut it out and it isn't an easy task. This disease effects 176 million women worldwide. The cost of healthcare for someone with endo is $70 billion a year. There are $2,000,000,000 just for drugs that control pain but there is limited funding to research the disease. I could go on and on about it but this is real talk. My story is just a glimpse of how it is. I didn't even get into heavy details about it.
So this is where it all began to where it is now.
