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Maddie

@endopains_

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I’m just a 24 year old girl with stage four endometriosis, trying my best to navigate life amongst all the chaos🌻

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hello! my name is maddie and I felt it was time to share my story!
i was diagnosed with endometriosis upon my first period at age 13, as the bleeding started and never stopped. after about a year of bleeding non-stop, i had my first ovarian cyst rupture when i was on a trip up north with a friend. i was 14 years old, confused in a hospital bed in the middle of nowhere. following my cyst rupture, i found an OBGYN in my area where I was put on continuous hormonal birth control in hopes to suppress my periods and stop the bleeding, as I was severely anemic. unfortunately the birth control only made my symptoms worse, which meant entering high school with the most debilitating pain imaginable and i was constantly afraid of bleeding through and embarrassing myself. i missed 70 days of school on average due to the nature of this disease. i remember being so happy when COVID hit because i finally didn’t feel like i was missing out on everything, as we were all missing out collectively. after graduating, i knew i wanted to continue education, but i wasn’t sure how to do it. i began reaching out to different OBGYNS and decided to get my first laparoscopy in august of 2021. i had incredible results for about two years, until i started to experience debilitating pain in my right ovary in april of 2023. upon doing an ultrasound, it was discovered that I had a 7 CM endometrioma cyst (a blood filled cyst) that was hemorrhaging into itself, so I got that removed. unfortunately my pain persisted and i was back in the operating room 6 months later for another laparoscopy. they found that I had stage three endometriosis, it was on my bowels, bladder, intestines, ovaries and uterus. i had high hopes that there would be improvements, but i ended up having complications in which i had a liter of blood sitting in my abdomen and my hemoglobin dropped to a six. now here i am eight months later, getting ready to go back in for another laparoscopy due to significant growth shown on an MRI. by @endopains_

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2 years ago

• Endometriosis patients need to be listened to the first time that they ask for help. Waiting 7-10 years for a diagnosis is detrimental to physical and mental health, we deserve the proper care and treatment 💛

#endometriosis #endometriosisawareness #endometriosissupport by @endopains_

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17

a month ago

• The truth is, this recovery has been challenging and unpredictable. When I made the decision to get a hysterectomy, I knew that it could set my PMOS/PCOS off. I decided to have this procedure because the pain in my uterus and cervix became unbearable, as I also had adenomyosis. My uterus and cervix were covered in adenomyosis and endometriosis and I am so glad that I trusted my body and did what was best for me.

• Everyone’s healing process looks different, and that’s okay❤️

#endometriosis #endometriosisawareness by @endopains_

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7

a month ago

• Vetting out a team for your endometriosis care can be difficult and time consuming. Looking out for red flags can make this process a bit smoother and I wish that I would have known what to look for sooner. 💛

*None of this is meant to be taken as medical advice*

#endometriosis #endometriosisawareness #endometriosissupport by @endopains_

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4

2 months ago

• An update on my hysterectomy and endometriosis excision! *Disclaimer, the autocorrect changed Adenomyosis to endometriosis.* I got the hysterectomy due to adenomyosis, not endometriosis.

#endometriosis #adenomyosis #hysterectomy #hysterectomyrecovery #endometriosisawareness by @endopains_

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4 months ago

• How much more do patients need to prove in order for this disease to be taken serious?

#endometriosis #endometriosissupport #endometriosisawareness #endometriosiswarrior #endometriosispain by @endopains_

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7

5 months ago

• A dynamic photo dump <3

• First pic was me in my hotel in NYC, not pictured is me debating if I needed to go to the ER earlier that day.

• Second photo: I woke up the day I had to travel to none other than miss period herself

• Third clip: My friend and I walking to dinner, under my skirt was my heated shorts and I had to do a valium suppository before we could go out.

• Fourth clip: Getting prepped for my PET scab

• Fifth slide: Smiling, but it felt like my insides were being twisted, as acid was being poured onto them.

• Sixth slide: This CUTE uterus that my lovely friend @claire.wilcoxx made for me 🥰

#endometriosis #endometriosissupport #endometriosiscommunity by @endopains_

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6 months ago

• This is your reminder to always be the “difficult patient.”

• If a provider neglects the fact that you are advocating for yourself, find a new one. You deserve the proper care💛

#endometriosis #endometriosisawareness #womenshealth #womenshealthmatters by @endopains_

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0

6 months ago

today is the last day of march, aka endometriosis awareness month, so we’re adding an installment to Her Story today!

I sit down with the force of nature that is Maddie to talk all about her endometriosis and chronic illness experience 🎗️

Maddie’s journey is a story of survival. we’re talking stage IV endometriosis that has likely traveled to her breast and lymphatic system, EDS, and a surgery that almost took her life due to medical negligence. it is raw, it is heavy, and it is a necessary look at what happens when the medical system fails to listen.

but through the trauma, Maddie has found a mission: making sure the next generation doesn’t have to fight the same battles.

she’s educating people, sticking up for the children suffering through normalized pain, sharing her story, and changing the landscape of advocacy.

what we’re diving into:
💛the terrifying reality of extra-pelvic endo
💛the “alphabet soup” of EDS, PCOS, and PMDD
💛why self-advocacy is a literal life-saving skill
💛Maddie’s incredible education baskets for kids

this episode is a reminder that your pain is real, your intuition is valid, and you are not alone.

🎧 listen to the full episode now on Apple, Spotify, or wherever you listen to podcasts. by @endopains_

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7 months ago

• I have been trying to find the right words to discuss this process, but truthfully there’s no “perfect” way to feel about something like this.

• Please refrain from sharing negative experiences in the comments, as this is already an incredibly difficult process.

#hysterectomy #adenomyosisawareness #adenomyosis #endometriosis #endometriosisawareness by @endopains_

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7 months ago

• It has taken eleven years for me to find something that offers me as much relief as this does. I feel so grateful that my doctor was able to switch me from the pill form to the gel. 💛

#endometriosis #pelvicpain #endometriosisawareness #endometriosissupport #pelvicpainawareness by @endopains_

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3

7 months ago

• In honor of March being endometriosis awareness month, I wanted to share some facts about this disease.

#endometriosis #endometriosisawareness #endometriosisawarenessmonth #endometriosiscommunity by @endopains_

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4

7 months ago