Currently 34 I was diagnosed with endometriosis after a laparoscopy in 2019 and recently diagnosed with adenomyosis in October 2023
I’ve always had heavy periods when I was younger to the point of having to wear adult diapers in high school because I would bleed through my clothes.
It got worse in college when I was stressed in school. Migraines and dysmenorrhea were unbearable. A visit to my OBGYNE a few blood tests and an ultrasound later. Everything was normal except for a 2cm cyst found in my ovary. They said it was nothing to be worried about since it was pretty normal at my age and my lab results were all fine.
I continued my life with painful periods: living with 5 seconds blackouts, fatigue, bloating, migraines, back pain and missing out on work when my period was really bad. Ibrupofen was my best friend.
In 2019, while fast asleep, I was woken up by a stabbing pain on my right side groin that I couldn’t stand up. With cold sweats i was sent to the emergency room only to go home after 6 hours because they couldn’t find what was wrong. Even after a CT scan and transvaginal ultrasound. I was also sporting a huuuge endo belly by then.
I proceeded to another Hospital. I was given antibiotics because my blood results came back with a possible infection. My obgyne referred me to a laparoscopic OBGYNE. This is when she said I have to have a surgery to take out the cyst. After almost a week I had my operation. It was only then that they found out that my cyst erupted and i was diagnosed after with endometriosis. An hour long procedure became a 3 hour surgery to remove any adhesion. I was put on a pill after my surgery. It was visane, but had to change it because I just bled through 3 months after.
My doctor prescribed me to stay on a pill for 2 years After finding a birth control pill that “suited” my condition. This was after trying 2 more kinds of birth control because I hesitated to go through a medical induced menopause. The pill helped manage the pain but didn’t help with after effects of it like migraine, weight gain and hair loss.
In the start of 2022 I had to stop my pill and I would get my routine ultrasound and everything was normal. But my symptoms slowly came back…. it was creeping in month by month. Starting from painful periods, back pain until one day I couldn’t walk because i lost sensation on my legs. After doing rehab classes because I thought it was my back giving way, my rehab doctor suggested that my case could be hormonal and not musoskeletal.
This is when i went to my OB again and after 6 months of only being cleared with my ultrasound coming out as normal…. There growth again. They i was diagnosed with adenomyosis and my endometriosis recurring. My doctor suggested to do another round of hormonal therapy.
At this point, I felt that any medication i toom was only a band aid solution.
I started researching because there not so many resources here in the Philippines nor doctors who specialize with endometriosis that wouldn’t advocate for other treatment options except for hormonal treatment. One of my clients (i’m a pilates instructor) suggested to try traditional Chinese medicine. I started doing acupuncture with chinese nuns and also started my anti inflammatory diet and it made a HUUUUGE change. Not only was pain during period and ovulation manageable but I was also functional in daily life. My fatigue became better
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?
Symptoms started when I was 14 i was diagnosed at 29
What were your initial symptoms? Do you feel they've progressed or gotten better over time? What symptoms do you currently live with?
Heavy periods. they’ve progressed. Fatigue mostly and pelvic pressure with back pain
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?
ALOT. From my mom to saying everyone had painful periods in the family so it’s pretty normal to others saying i just have to fight through it.
How do your symptoms/ pain affect your overall wellbeing? Have you experienced any challenges in communicating your struggles to others?
Yes. Especially to my family who would think i was just over reacting
How is your support system? Do you feel supported? Do you feel that your family and friends try to understand and support you?
I feel supported by friends more than from my family. My doesn’t understand what I’m going through.
How is the quality of your medical care now? Have you found that medical professionals that you trust? Or are you still searching?
Traditional Chinese medicine changed my life.
Are there areas (relationships, work, hobbies) that have been particularly affected by endo?
Work. I had to skip work some days especially when periods were bad. But after starting a whole lifstyle change + acupuncture everything was better.
What strategies or treatments have been effective in managing your pain? Are there specific activities or lifestyle changes that have helped to alleviate symptoms?
Acupuncture + increasing some supplements and anti inflammatory diet
What strategies or treatments have NOT been effective in managing your pain? Are there specific activities or lifestyle changes that you've made that didn't help to alleviate symptoms?
HORMONAL THERAPY DIDN’T DO SHIT
What do you wish you knew earlier in your journey?
That there were other options that birth control
Have you found the endo community to be helpful throughout your journey? What does community mean to you?
YES AND YES i feel more understood
Are there any misconceptions about endometriosis that you've encountered?
That it can be cured by pregnancy, hsterecromy or surgery.
What advice would you give to someone who suspects they may have endometriosis? Is there any guidance you would offer to those recently diagnosed or struggling with their journey?
ADVOCATE FOR YOURSELF. Fight because your pain and suffering is valid.
