Endometriosis - One Year After Surgery

One year ago today, I woke up at some ridiculously early hour and took my second shower in about a 6 hour time frame with that unflattering antibacterial hospital soap and traveled 1.5 hours to SSM St Mary’s in St. Louis.

I knew I had endometriosis. My surgeon knew I had endometriosis. But, it is not definitively diagnosed until a skilled surgeon who knows exactly what to look for, performs a laparoscopy and sends samples of tissue to pathology.

Throughout five hours of surgery, Dr. Patrick Yeung removed 14 areas of endometriosis-suspected tissue -- this included my appendix and a connecting piece of cecum, my left ovary, and my left fallopian tube. Two large ovarian cysts were also on the agenda -- one measuring 12 centimeters on the left is what ultimately caused too much damage and required the salpingo-oophorectomy. The right ovarian cyst was only 8 centimeters and was successfully drained of the “chocolate” fluid endometrioma and then repaired. (a couple weeks earlier in an ultrasound, the ultrasound tech showed me how those cysts were so large, my uterus was literally squashed between them)

The remaining areas of suspected endometriosis were scattered throughout my pelvis. I had, without a doubt, stage 4 endometriosis (which actually refers more to fertility, but that’s just a whole other post of information to break down, so I won’t go there right now).

All 14 of those areas came back from pathology as confirmed endometriosis.

I go all out, people.

It took well over 10 years and over 4 doctors to find a doctor who not only listened to me, but understood endometriosis.

Today, it has been one year since a random endo flare greeted me first thing in the morning as I woke up in pain on an otherwise seemingly normal day.

One year since, on those days, I would lay on my bed during my lunch hour practically unable to breathe from the intense pain, summoning the strength to return to work for the afternoon. I always did. Dr. Yeung said I had built an incredible pain tolerance.

One year since I worried if the next big event or holiday coming up would be missed by my inability to function enough to go (limping to my desk at work and sitting immobile in my chair is quite different than standing up in a wedding or going to a baseball game).

Contrary to incorrect information flying rampant in the media -- and even in the medical community -- endometriosis does not originate in the uterus and thus, a hysterectomy would *never* have helped me enough.

Technically, I am not “cured”. Endometriosis does not have a cure. However, laparoscopic excision surgery performed by a knowledgeable and skilled surgeon, where all of the disease is removed, has a less than 20% recurrence rate. I suppose you could say I am in remission from endometriosis.

I don’t post these endometriosis posts for shock value or to make you squirm with embarrassment to read words like ovary, fallopian tube, uterus… (though, our society’s refusal to speak about these things in an educated, informed manner is partly why endometriosis is so misunderstood, today) My goal is to help women advocate for themselves, to equip them with the knowledge to get the help they need, and to dispel the bad information running around out there.

Don’t you think a disease that affects 176 million individuals worldwide and costs the United States $119 billion annually in combined economical loss should be dealt with properly? I do. If you haven't read my other endometriosis posts, you may want to read my own personal story or read more about endometriosis as a disease.

#endometriosisawarenessmonth #endosister #endowarrior #endometriosis