My battle with endometriosis
Happy March! I live in New York, so hopefully this month will bring forth a bit of Spring, fingers crossed. March is a special month for me, if my mother's reading, yes mom it's partially because it's your birthday. Mainly, because it's a month of awareness towards a disease truly close to home for me, endometriosis awareness month. I got diagnosed when I was sixteen years old. Endometriosis, clinically, and shortly defined, is disorder in which tissue that normally lines the uterus grows outside the uterus.
This post will probably be the longest post I ever write, and most likely therapeutic for me in some sense, and as "off track" as this is from my brand, it is something I am involved and intertwined with personally, therefore as different as this is. I am willing to be raw, and completely honest, to raise awareness in this disease that 1/10 women have, and if you do read on, thank you for reading my story.
I chose to make this post this year because blogging has given me a platform I never truly had before. I can articulate my words, and get across every point I would like to. Throughout the last year and half, I became more vocal about my endometriosis on my personal Instagram, and in doing so, was able to connect with other women suffering from the disease, as well as receive news I was someone to help push another young woman into getting checked, which for me, was the determining factor that I needed to keep speaking about the topic, and disease, as out of my comfort zone as it may be. As you continue reading, please note, I am not a doctor, and this is just my own personal story of my struggles with endometriosis. So this post is for all my fellow endo sisters struggling, to encourage others to learn, recognize your body, and ask questions. This is my story, of endometriosis and how I am five years into my diagnosis.
One of the reasons I always avoided talking about my endometriosis publicly, and even to some family and friends, was because I was embarrassed of the symptoms presented. I got my first menstrual cycle at the age of nine, which is extremely young. I remember being in so much pain, and bleeding heavily. My family history "explained" this in both my eyes and my family's - we had a history of heavy periods, with bad pain. So we called my family doctor, and informed them that I got my period. However, a month later, nothing came. I went a year without getting another period, before it returned full force, with even worse pain, and not to mention, it was irregular (my first period "back" lasted three full weeks). We took a trip into my family physician and she reviewed my history, and quite frankly, the pain I was in was overlooked. I was told that unfortunately, it was "a part of being a woman now" and my solution was to just "take some midol...rest, and use heating pads." At the time, I thought how could my doctor be wrong, this must be the key to fixing my bad periods! However, in retrospect, younger naive Samantha just didn't know any better (I mean I was ten, so I can't be too harsh on myself). A year went by, with monthly irregular long lasting, heavy, bad pained period, that no midol was fixing. So, back to the doctor it was. It was at this point, my family physician recommended me to a pediatric OBGYN, who at the time I didn't know, but would follow me until just a year ago, so for nine years, practically a decade. I truly cannot thank that doctor enough for everything she did, and always would do for me, I am intensely grateful.
I was so nervous going to a new doctor, and at the age of now eleven, a "woman" doctor scared me. However, the minute I was in her office, my doctor eased my worries. She listened to everything I had to say, asked many questions, and made lots of notes. She wanted to monitor me for a year before putting me on any medication, because I was just so young, and I truly appreciate now (because as the story goes on, you'll see, hormonal medication was just not my friend). So, another year of painful periods, with irregularities. I was missing school due to this, I was miserable, fatigued, and everything under the sun. No twelve year old should have to go through the pain I was experiencing. I was able to bear it for awhile, the pain becoming more normal to me, which both me and my doctor agreed this pain was not okay, nor normal, and there needed to be some solution, so I was put on my first birth control. The birth control helped, however there were the ups and downs - it regulated my period, but the cramps weren't helped, and now I was becoming more and more nauseous. So a few months of letting this birth control "work" before my doctor and I decided to switch and try another, to try to help all my symptoms. This became a common theme, everything seemed to work for quite some time, but then just stop after awhile, and the symptoms were coming back full force.
At fifteen my first, of many unfortunate surgeries came out of no where. I was in my freshmen year of high school, and I'll never forget dropping to the floor in intense pain during a free period, due to an insanely sharp feeling that was located on my lower right abdomen. I was rushed to the hospital where they thought something with my appendix was wrong. However, it turned out to be a large cyst attached to my right ovary. My OBGYN had me rushed into surgery the next day to remove the cyst, and the surgery was successful. She was able to remove the 4.5cm hemorrhagic cyst, and cleaned up any residual fluids. So it went for the next year, continuous doctors appointments, reoccurring symptoms of cramping even when my cycle wasn't around, intense nausea, headaches, backaches, and the list goes on, going to list symptoms below. It was the same routine of trying different medications.
Before I forget, I'm going to link endometriosis symptoms here.
After a year of on and off horrid pain, and symptoms listed prior, in October of 2014 I was in continuous horrible pain all day, and was brought to the hospital by my family. By this point, I was very familiar with this hospital, knew a lot of the staff, and they knew almost everything about me even down to my favorite show. At this point the pain was mainly always in my abdomen creeping into my lower back, and mostly my right side, which nothing was ever wrong with my appendix so it was stumping doctors. My superhero OBGYN came into the hospital to do a full check of what she thought was going on, and with her go, she wanted another doctor take my appendix out, while she scoped for endometriosis. It was my first time really hearing the term endometriosis, but she had explained, after reviewing my pattern history over the years she treated me, everything lined up for endometriosis. Therefore, what was happening was my endometriosis would inflame, then would then result in irritation to my appendix causing it to flare, but never burst, and by time I was ever in the hospital to get a scan, the inflammation had gone down to never result in any answers. Now don't quote me, I'm not medical professional, but hearing all this to me, this was my first major surgery with a determining factor at the end of it: was I going to live with something at the end of this for the rest of my life, or was it something simply else? After undergoing surgery (laparoscopy + excision for my endometriosis, and appendectomy), I spoke with my doctor, and my labs came back positive for endometriosis. Going home at sixteen, I googled it, and learned about it on a surface level. I understood endometriosis, I grasped it, but it never resonated with me. I just put it down as an unfortunate thing I was going to have to now deal with, and manage. I was on an IUD at this time, as well as switching from pill to pill to manage the pain and hormones in my body, in a state of what I now call "hormonal daze" which is no one's fault except endometriosis, and the lack of me not doing well enough of my own research. I am thankful my doctor never gave up on me, saw me whenever I needed her to, admitted me into the hospital for pain management when needed, but unfortunately, there wasn't anything else she could truly do. My endometriosis itself was under control, but the pain was not.
Fast forward years later, I was nineteen turning twenty, and with my amazing doctor who has been fighting my fight and helping me in the best way she possibly can, and quite frankly, to the best I educated myself. After many attempts with different hormonal pills, it had been not long since my first surgery, but I practically begged my doctor to do a second surgery, and with that I ended up getting my second laparoscopy. Now, before I continue, I feel that it is pertinent to say I am leaving out CHUNKS of time, of my day to day suffering, the bloating, the mood swings, the weight gain, my brain fog, the days where the pain sent me to the ER in no other hope other than to get something to sedate the pain, even numb it for a few hours. There are so many pieces to my story, to so many women's story's that are left out due to it feeling so redundant and normalized to us, but in all, what I suffered with was feeling guilty for a disease that wasn't visible, but was there, in my head "there was always something worse," and yes, while there are, it took me years to accept, this is MY disease, and I'm allowed to feel, act, and do such as I want, there is no right or wrong. After this surgery, I decided, besides my IUD, I wanted to stay as far away from birth control pills, and hormonal medication (besides my IUD, which is needed).
I had just been using my IUD for medication. I was using at home remedies, such as ginger tea, baths, etc for the uncomfy pain I was experience. I went into my doctor’s visit, which was a pretty regular thing, in January 2019. I knew I needed to get a new doctor, I was now out of my doctor’s age range on my health benefits, so going into this appointment, it was my goodbye, I had to pay for it, but wanted to because I wanted to say goodbye and be able to thank her for everything she always did for me, and always validating my pain. I truly am blessed for her never doubting not a single symptom, because I know there are some women who are not as lucky as I was.
In February of 2019, I met my now OBGYN who is a pelvic pain and endometriosis specialist, Dr. Julia Keltz. When we met, she had my chart, which at this point is thicker than an encyclopedic. Dr. Keltz spent time discussing everything, even though she had already gone through my chart. She wanted to hear it coming from me, and what my goals with this disease were. At this point of time, I had been reading more about endometriosis, and up to today, I was/and am educated about it. I feel as though in having my doctor treat, I as well owe my body the trust of continuing to learn about endo, because just when I thought I had it all figured out, a new study is released. Anyways, so I had told Dr. Keltz that I wasn't looking to have any more hormones in me aside from my IUD, and that my goal was to manage my pain, and take away being in pain for 3 weeks a month. I simply did not want to grin and bare it anymore. We decided to try me on gabapentin, because Dr. Keltz believed I was having issues with my nerves since they were so damaged from over simulation of pain throughout my abdomen (now, don't quote me on that, and I'm not going to get into the medical aspects, but I definitely wanted to bring this up, because for the past year, I've been on the same treatment plan). After a month, I could feel the difference. I was not in pain, I wasn't tired, or moody, I was happy. Three weeks of pain, turned into a week of pain during my ovulation (which to this day remains my most painful days of the month). So, that was basically all of 2019, feeling physically very healthy and happy, aside from a few flare ups and my ovulation, my endometriosis and pain had never felt more under control, and nonetheless with only one hormonal medication aside from my IUD and now the addition of gabapentin. Me and my doctor now joke that this is my miracle drug, because I truly have never had a better year than 2019 in my health since being diagnosed.
However, with endometriosis, with every high comes a low, and with every low comes a super high, or so I like to think. There will always be good days, and sometimes it takes multiple times to remind yourself of that which is how I started this year. On New Years Eve I began feeling sick, and a sort of sick which I realized wasn't my normal pain, nor was it ovulation. I was doubled over in pain for three days before going to the hospital, because I refused to spend my birthday there. Finally, when admitted, it was learned that another large cyst had attached itself to my right ovary, and it looked like it was going to burst. My doctor made the decision to remove it, so four days later, after being on many pain meds, I received yet again, another surgery. My doctor did an amazing job with the surgery, and it was the quickest surgery I'd ever recovered from, her and I both agreed in my PostOp, that we were happy with where things were, and that this "bump" shouldn't make me think less of the progress I have made with my body. So here I am, March 1, and I'm alive, healthy, and smiling.
I have been able to connect with so many amazing women over the past year with endometriosis, many of the women, sources, and other which will be linked below for further information. I have joined Facebook groups, which has truly helped on my lowest of low days feel like I am not alone. There are so many women, like myself who just want to raise awareness, because we DESERVE an answer, and hopefully a cure. There is no shame in our invisible illness, even if I have felt shame and guilt in the past, I prouldly embrace my disease, and it's a topic I passionately speak about now.
I hope this post wasn't too jumbled, or all over the place, as I know it's a lot of information to take in, and quite honestly, just a long damn story. My goal for this post was to educate and raise awareness about endometriosis, for those who may not know what it is, maybe some people have not even heard of it. I may not be able to find a cure myself, nor reach every woman on the face of the earth to raise awareness, but if I'm able to reach ONE woman - that could be my 1/10. I am grateful to have a platform like this to share my story. This is the first time I have ever spoke publicly, in depth, from beginning to end told my story, and it sure as hell feels like after writing this "a secret" was unleashed. I'm happy to have this out there, so if you've made it this far, thank you.
Great for general Endometriosis information
"This Endo Life" Apple Podcast
"Nay-endosister" Faceboook Group for Endo warriors - it's been an amazing source of connecting with women who are feeling similar to me, and makes me feel not alone on my lowest days, and worst flare ups.
Great Instagram accounts to follow pertaining to Endometriosis: