Endometriosis & Me: Part 1, Education

So I thought I would start this post with a bit of education. I think it’s so important that the world become more educated on what endometriosis really is and what the folks who live with this disease go through.

Endometriosis is a disease in which tissue similar to the lining of the uterus grows outside the uterus. This tissue can adhere anywhere.

Adenomyosis is the evil twin sister of endo. Most people with endo also have Adenomyosis. Adenomyosis is a gynecologic condition that causes endometrial tissue in the lining of the uterus to grow into the muscular wall of the uterus. Adenomyosis is usually at fault for the symptoms related to heavy bleeding.

Facts about endo:

It has been found on every organ in the body
There are 4 stages of endo ranging from minimal to severe
Endo is one of the top 10 most painful conditions in the world
Although it’s suspected that every 1 in 10 people with a uterus have endometriosis only about 20% will EVER receive a diagnosis

Of those people who get diagnosed most people wait an average of 8-10 years for the diagnosis

There is no cure
Laparoscopic excision surgery is thought to be the best treatment
The most common misdiagnosis is anxiety or depression along with PMDD

My symptoms: This list is as exhaustive as I possibly could make it without saying “it impacted everything” and leaving it at that.

Headaches & migraines
Bleeding extremely heavily (to the point of severe iron & magnesium deficiency)
Nausea and vomiting
Severe pain
Bloating & severe endo belly
Bladder pain
Food aversions
Brain fog and chronic fatigue
Leg pain and cramping
Trouble breathing and chest pain
Infertility & recurrent miscarriages (👼🏻👼🏻👼🏻 - my sweet angel babies)
Insomnia
Constipation and diarrhea
Frequent UTI & yeast infections
Pelvic floor dysfunction
Painful sex

Endometriosis & Me: Part 2, Background

I got my period when I was 9 years old, a few months shy of turning 10. I remember it was summer and that my brother Ethan was still a little baby. I don't remember much about that period except my nana buying me a new-to-me dress from a thrift store, and telling me how much I would appreciate the loose clothing. I remember some weird familial tension around celebrating my “womanhood” (insert pre teen eye roll here).

Then, every month like clockwork, the pain would set in and a few days later I would bleed. I bled for 5-7 days, but usually closer to 7. I lived in agony or I slept; my period impacted everything. School, social life, dance. Everything. Rinse and repeat for 9 years.

I was 19 years old and my OBGYN put in an IUD. Then, I got my period for months on end. You read that right, I bled for months. I begged to have it removed and it finally was and it was replaced with a pill form hormonal birth control. My memory of this time is fuzzy, but I think all told I tried probably 6 different pills before saying I wanted to be off all birth control to see what my body would do.

This takes me to about age 25, living with chronic pain and a myriad of other symptoms (see above). I had done research and self diagnosed myself with endometriosis. No provider did anything; now I know this was because they didn'‘t know WHAT to do. My options were always presented as pain medications or another birth control. I refused either of those so-called “treatments” and soldiered on.

Right about this time, I also became a doula. I learned more about pelvic and perinatal health and specific providers in the area. I advocated for so many of my clients and learned so much. At 30 I learned of a new Endometriosis Care Center being opened at Mount Auburn Hospital. I knew these providers, I trusted them, I worked with them…and I gave it one more shot.

I submitted an inquiry and appointment request form. On June 20th 2023 I had my initial consultation with Theodoros Kapetanakis (Theo or Dr. K.). I recall filling out all the forms and feeling nervous it would be like all the other appointments. In retrospect, I don’t blame myself, but I wish I could go back in time and believe the “it’ll be ok” and “he will listen” affirmations I was repeating to myself.

Endometriosis & Me: Part 3, The Appointment

I was called back into the appointment by a nurse, and we went over a few intake questions - all very standard. Theo walked in and introduced himself and shook my hand. He sat down on a stool in front of me and said he wanted to hear my story. I joked “that’s a long story” and he said calmly, “well I’m here to listen. I want to know all the symptoms, “treatments”, all of it.” I almost cried then, but I took a breath and started sharing.

He would pause me every few mins and ask specifics about symptoms, but at no point did I feel like he was just checking boxes. This wasn’t about checking boxes for him. He was genuinely asking. Ease set in and we chatted for a solid 20 mins. We talked like old friends about everything. I shared about my pregnancy losses, all the endo symptoms, the heavy bleeding, unexplained anemia…

He asked softly, “Is that all?” and I laughed and said “could there be more?” and he chuckled. He asked my consent to touch me. He held my hand and had his hand on my shoulder. He got serious and said “this isn’t normal. We are going to do something about this”.

Relief, sadness, grief, and probably about 20 other emotions washed over me. I tearfully asked him what could be done. He started by explaining endometriosis, giving me a crash course and overview of the research I’d already done. He offered two paths, a non hormonal IUD OR surgery. I landed pretty firmly on surgery after our extensive discussion. He drew out (in scribbly doctor handwriting) what to expect from surgery and said he would follow up in a week to see if I still wanted to move forward.

I came home already having made my decision and messaged him the next day in MyChart to schedule surgery. His scheduling team got back to me with the date March 15th 2024. SOLD. Now the countdown began. How many months, really how many periods I had left. I had 9 left. 9 more periods. That’s it. I could TOTALLY do that.

Endometriosis & Me: Part 4, Surgery

My husband Jake & I in preop on surgery day!

Over those 9 months what I learned very quickly was that symptoms of endometriosis tend to get worse in your 30’s. Well I was 32. And every single period got worse and worse. I felt completely unable to leave bed some days. The severity of my symptoms increased, numbing contractions (cramps) radiating into my thighs, excessive bleeding, migraines, bloating (mostly known as endo belly), painful sex and orgasms; the list was never ending.

I counted days, periods, weeks, moments until surgery. I couldn’t wait. In January I got into Pelvic Floor Physical Therapy at Foundations Pelvic Health (shout out to Khaleela for all your support!) to help ease symptoms before surgery and to prepare for surgery recovery. I was in the home stretch. I attended 3 pre-operative appointments with Theo and his team and got my neverending list of questions answered! I prepped meal trains, started an amazon wishlist, made group chats for recovery support. I was SO ready.

March 14th was bowel prep day (and IYKYK) and it was rough, but nothing could take away my anxious excitement. I slept as well as one can the night before a surgery. I got dressed in baggy clothes and my endo warrior shirt. I put my yellow socks on. Serendipity had it so my surgery was planned during Endometriosis awareness month and because I am the advocate I am - I wasn’t quiet about this surgery!

The day was finally here and here’s where I pause for a moment. I could not have done literally any of this without the help and unwavering support of Jake. Truly, everyone deserves a Jake in their life and I’m really grateful to have had him as a partner in this. I love you and thank you for everything you did for me.

Well, it was time. We drove to Mount Auburn and we went into preop. The nurses were kind and supportive. We met the whole team (anesthesia, the fellows, Theo came by, all the nurses) and around 3pm I was wheeled back to the OR. I of course remember VERY little of this whole experience, but I remember anesthesia and Theo telling me I’d be ok and they had me. I remember feeling safe and cared for.

3.5 hours later Jake got the phone call that I was all done and being brought to post op. He got to chat with Theo and he confirmed I had stage 4 endometriosis and there was “deep infiltrating disease”. There was more than he expected, but everything went perfect. The endo was gone and so was my uterus and cervix, they were able to save both my ovaries though! Yay!

And so began recovery…

Endometriosis & Me: Part 5, Recovery

I left the hospital the same day as my surgery getting home around 10pm. The first two days were BRUTAL with frequent waking for medications (every 3 hours), constipation, hot flashes, and side effects from the opiods. I put my foot down Monday (surgery was Friday) and refused to take any more opioid medications. So, now I was on tylenol & ibuprofen alternating every 6 hours. Easier to manage and my brain could come out of the fog. Some days were tougher than others, but I rested, watched tv, ate good food, and had great company with Jake.

Week one went exactly as expected and week two went just as well. I felt more like myself everyday. I am sitting writing this from 4 weeks and 4 days post op. I feel about 90% at a new baseline, my body for sure tells me when I’ve done too much. I’m practicing giving myself grace and taking it easy these last few weeks before I’m on call for birth clients again.

During recovery - I think around week two - I got a MyChart notification that my pathology report was in. I read through it and found the full diagnostic report. The following was a summary of what they found:

Confirmed endometriosis adhered to all the “normal” culprits and a few surprises which included; peritoneum, uterosacral ligaments (left & right), pelvic floor, bowel (2 inches were resected), bladder, diaphragm, uterus, ovaries, pelvic sidewall (left & right), rectovaginal septum, and more.
Deep infiltrating adenomyosis (which led to a “boggy” uterus - for my fellow birthworkers)
3 cm endometrioma on my left ovary
6 cm benign leiomyoma tumor in my uterus

I knew most of this from what Theo had shared over messages and with Jake in that post op phone call, but to see it all in one place was intense. I’m not sure if I will ever be able to wrap my head around the magnitude of what was wreaking havoc on my insides, but I’m grateful it’s gone.

I won’t be fully cleared until May 6th, but after a post op visit today I was cleared for longer walks, driving, and was told that I could really do what I wanted unless I was experiencing any pain.

Can you imagine… I’m not in pain. My mind and body still don’t believe that most days and I’m practicing learning to release any tension from my body and let go of anxiety from pain anticipation. So, onwards and upwards. Emotional healing will take forever and I’m in regular therapy, I return to pelvic floor PT in May, and now it’s just easing back into life as a whole new me.