At the endo the day...

Long name for a blog. But welcome! I’m Marina, and one year ago I was officially diagnosed with endometriosis during a laparoscopy. From ER and urgent doctor’s appointments, medical scans and bloodwork to debilitating pain, I know that endo (with or without a diagnosis) can feel like the end of the world. And it sucks.

This blog is meant to help people who are suffering or suspect they might be suffering with endometriosis, interstitial cystitis, and other chronic pain conditions feel less alone, and maybe offer some tips for how I’ve navigated my experience. For me, when I heard about someone else’s endo experience, it felt relieving that someone else was going through the same thing and still surviving, so I hope this can be a reminder that at the end of the day, endo is not the end of the world. I’m no doctor, so please don’t mistake me sharing my story for medical advice. From time to time, this blog might have contributions from a friend who’s a medical resident in gynecology, but please remember that online, general medical input cannot replace visiting your doctor in person.

For those who don’t know, endometriosis is a condition where tissue similar to that of the endometrium grows elsewhere in the body (it can be anywhere, despite it being characterized as a solely reproductive disorder by many). It can result in extreme inflammation and pain, often concentrated around the menstrual phase, and can lead to infertility. It often manifests as extreme menstrual cramps, but can also generate referred pain in the back, legs, chest, or anywhere really, along with pain associated with intercourse, bloating, and digestion issues.

I was 90% certain that I had endo long before the surgery. My gynecologist, who also performed the laparoscopy, had also given me a preliminary diagnosis based on my symptoms about a year prior to the operation as well. Nevertheless, like many others with the condition, the lead up to my actual diagnosis was years in the making. Prior to finding the doctor who did my surgery, I went to countless other doctors, including at the emergency room, to try and understand my symptoms. These doctors did not take my pain seriously, and did things like testing me for an STI rather than listen to my experience. The pain became unbearable, and I was constantly missing activities I used to enjoy and dissociated from my surroundings.

Where did it all begin? When? It’s so hard to know since menstrual pain has become so normalized. I have had terrible periods ever since I started getting them, loads of blood, loads of pain. I was put on hormonal birth control early in my teens, and bounced around between types. There were a few years where I had continuous spotting and cramping throughout. Eventually, it was determined that I should not be on hormonal birth control containing estrogen, as I suffered from migraines with an aura and this put me at a higher risk of developing blood clots. This left the progestin only pill, which did little to control the pain or my cycle in my later teens and early twenties. I first recognized this chronic pain going beyond what I considered “period cramps” at around 19 years old, when I would take off my high waisted jeans and be met with extreme bloating and lower abdominal pain. This was bizarre and unexplained, but since I’ve had the surgery, this has mostly subsided. Around this time, I also experienced isolated bouts of extreme pelvic pain. A few years later, I couldn’t wear anything with a tight waist, as it would bring excruciating bloating and pain to my abdomen (I was left with baggy jumpsuits, overalls and dresses to wear every day, often maternity clothing) and noticed 4 inches of waist fluctuation in a day. It was hard for me, it was hard for my partner, it was hard for my family, and it was hard for my friends. So many conversations I had during that time had to do with my chronic pain—it was so top of mind that it really took over my life. This coincided with the pandemic, living abroad and doing my master’s, none of which were ideal to experience while curled up in a ball on my apartment floor. The worst of it was that my body felt like it wasn’t my own anymore, I gained about 20 pounds** and wasn’t able to move the way I used to.

Luckily, since the surgery, I have noticed a remarkable reduction in symptoms. Thanks to the surgery, pelvic floor physical therapy and Mirena IUD that was also inserted during the operation, it feels like I have my life back. I can wear jeans again (big win!), exercise and feel at home in my body. Although, it wasn’t an easy ride following the operation and I didn’t necessarily notice a reduction in symptoms for a few months (at least!). But that’s a story for another day. While I know my endo wasn’t cured by the surgery, it feels amazing to have come out the other side with normalcy and feeling happy in my body. Again, I hope sharing my story can bring some awareness to this very common condition, challenge the stigma around discussing pelvic and menstrual pain, and make people who might be suffering feel less alone. If that sounds like it’s for you, you can subscribe and check back here anytime! I have lots of tips that helped me navigate the illness, the surgery, and more, and am so excited to share them in case it will be of some use.

Topics to look out for:

• What I wear when I have a flare up

• Getting to a diagnosis

• My surgery experience

• Endo & Isotretinoin (Accutane)

• Endo & Interstitial Cystitis

• Navigating chronic illness & travel/living abroad

• Period underwear recommendations (use code "MARINA" for 15% off) & reviews (full list coming soon)

Thanks for reading!

**Gaining weight wasn’t the issue, it came along with my body feeling so out of my control and I lost a lot of muscle which prevented me from feeling like myself when playing sports and even maneuvering through daily life.