My journey with endometriosis started with heavy periods and menstrual migraines at the age of 15. When I was 22 years-old in 2020, I started to feel sharp left-sided pains that would come and go with no obvious cause. Over time, it progressed and felt like it was a fork inserting itself in my side, deep into my muscle and maybe into my organs. The pain would then radiate to the lower left side of my abdomen. Eventually the pain would get worse as I would twist or move side to side. I had endured enough and contacted my current primary care provider (PCP). He assumed at first that maybe I had a kidney stone as they ran in my family. I was sent home with medication and a filter to catch a stone if one ever appeared. None did. The pains never went away and I was recommended to have an x-ray and MRI. Nothing too odd showed up that was worth mentioning.
[misdiagnoses and gaslighting occur - I leave my second OBGYN and original PCP since I was a kid due to assuming I was pregnant, pushing new birth controls constantly, denying my pain was anything to be worried about]
By the time I was able to see my new and current OBGYN, 3 YEARS had passed. I was now experiencing [symptoms below]. I had called out of work so many times that I was talked to by my boss. Attending work and school was getting more difficult as I didn't feel safe driving nor comfortable not being near a bathroom at all times. During these three years, I had also found Mik Zazon on instagram and followed her endometriosis story closely. My symptoms were aligning closely with hers, and I was becoming incredibly skeptical.
Once I met with my new OBGYN, she immediately mentioned how she thought I may have endometriosis. She was so sure because of how heavy my periods were along with my other symptoms. My mom and grandma's history gave her even more validation - they both had intense struggles with fertility, heavy menstruation, and irregularity. My appointment concluded with getting scheduled for an ultrasound for my left-sided pain.
Unfortunately, my ultrasound did not find anything unusual in terms of endometriosis, but it did discover a blood clot in my ovarian artery. I was diagnosed with Pelvic Congestion Syndrome and was finally given an answer to my left-sided pain. PHEW! But what about my endometriosis suspicion? I was still feeling so fatigued, cloudy, nauseous. I needed answer about those symptoms because apparently PCS did not cause it. After FIGHTING with my OBGYNs nurse, I was given the okay to have laparoscopic surgery to diagnose endometriosis.
November 2023 - I had laparoscopic surgery and was terrified that I signed up for an invasive surgery just to be told there was nothing wrong with me. When I woke up from surgery, I peered at the clock. Two hours since I went under. I scrambled to lift up my gown and saw three incision marks and cried. After I was wheeled in to my room, my mom and fiance came in and just gave me this look. They confirmed that my doctor found endometriosis. I cried again. Stage 3 endometriosis: located on my right ovary, posterior pelvic wall, appendix, and the end of my colon.
I am two months post-op: how am I doing now? Well, my most current cycle was a LOT more normal that my first two post-op. I do not have clots during menstruation, no severe migraines or nausea, and I did not have any cramping. I have heavily focused on repairing my core muscles and pelvic floor as they are dysfunctional. I can enjoy exercising!
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My support system has been great. My family and friends have been encouraging and provided a shoulder to lean on before, during, and after surgery. Many of my loved ones who did not know what endometriosis was took the time to do their own research before approaching me about it. I felt so enveloped in love during those moments. However, navigating work and school is still tough. This diagnosis is not a "real" medical excuse to miss a shift or lecture. Sure, sometimes they're accommodating but they still make me feel embarrassed or unsupported overall.
As someone who is getting their Master's in public health, I find that it is incredibly important to share the symptoms (common or uncommon) of endometriosis. To share the lived experiences of women who have a uterus that deal with endometriosis day to day. I have encountered many women who have asked "what is endometriosis?". I have already had a mother come to me for answers. She's worried her 16 year old daughter has endometriosis and her doctors won't do anything. As much as I wan't to be a voice to spread awareness, we also need to push for practitioners to do better - and not dismiss endometriosis as: anxiety, kidney stones, pregnancy, someone seeking drugs, someone who is hypochondriac, someone who is dramatic.
How long did it take for you to receive a diagnosis? How old were you when symptoms started? How old were you when you received a diagnosis?
It took me 3 years. My symptoms started when I was 15 years-old and got to its most extreme when I was 22. I finally got my diagnosis shortly after I turned 25 at the end of 2023.
What were your initial symptoms? Do you feel they've progressed or gotten better over time? What symptoms do you currently live with?
My initial symptoms were left-sided pain which actually had nothing to do with my endometriosis but an entirely different disease. However, I had heavy periods (clots), extreme bloating, loss of sex drive, pain with sex, nausea, migraines, fatigue, brain fog, aches all over my body, dizzy spells, increased hair in places it shouldn't be (chin, abdomen).
What was your experience with healthcare professionals during the diagnosis process? Were there misdiagnoses or misunderstandings? Did you experience any dismissive attitudes regarding your symptoms?
My misdiagnoses were that I had either kidney stones or I was pregnant. I got gaslit a lot into believing that I just needed a new form of birth control or an additional one on top the IUD I had. I was told that these symptoms can happen and it's nothing to worry about.
What strategies or treatments have been effective in managing your pain? Are there specific activities or lifestyle changes that have helped to alleviate symptoms?
Resting as much as I can, extra strength ibuprofen, heating pad, a large reduction in alcohol consumption, and I am working on repairing my pelvic floor and abdominal muscle due to extreme dysfunction (which I guess can be associated with endometriosis belly).
What do you wish you knew earlier in your journey?
I wish I would've just had the strength to leave my doctor's earlier and find a new provider who would have listened to me. Truly listened to my lived experience and not try to shove another form of birth control in my face.
