Read my first One in Ten post about endometriosis here: https://emeryrachellewrites.com/2021/03/10/endometriosis-awareness-month/

“So what’s this about surgery, Emery?”

Let’s back up:

💛 “When did you know you had endometriosis?” 💛

Since I first started menstruating at age 11, my periods have really, really sucked.

I was diagnosed with endometriosis based on my symptoms and family history when I was 17 and started birth control pills. Since then, I have tried at least ten different pills, been diagnosed with bipolar disorder (limiting my hormonal treatment options), and been diagnosed with polycystic ovary syndrome, or PCOS (a hormonal/endocrine disorder affecting ovarian function and menstruation). An attempt to treat PCOS with medication ended up worsening endometriosis symptoms.

💛 “How has endometriosis affected you?” 💛

I skipped a day of a high school ski trip to lie in bed in the cabin. I limped to college classes and sometimes skipped them altogether to lie in bed being miserable. I took prescription-level amounts of ibuprofen that have, over time, caused some problems with my stomach. Trying to sleep during my period is laughable (which definitely doesn’t help my bipolar disorder).

I have lost jobs because I can’t perform my duties and/or miss too many days lying in bed with a heating pad and maxed-out doses of Motrin and Tylenol. I once went to the emergency room for what I thought was food poisoning, but turned out to most likely be a burst ovarian cyst (that one’s on PCOS, but comorbidity is not uncommon and having endo makes treating PCOS harder). I have doubled over sobbing from pain in the middle of sex.

My pain is usually felt in my entire pelvic region and lower back, eventually radiating up to mid-back and down into my legs. Pain can be sharp and sudden as well as a constant ache. I can’t use a menstrual cup or tampons anymore, because wearing them hurts too much. (Side note: Bambody period underwear is the bomb, 100% recommend.)

Over the past year, I have also suffered from bowel problems, severe constipation, and abdominal pain strong enough to go to the emergency room (again). I was diagnosed with IBS (irritable bowel syndrome) in November. This might not be related to endometriosis, but many patients with both discover during surgery that endometrial growths on or in the bowel are causing their problems. I do wonder if adhesion (two organs getting stuck together from the inflammation) or endometrial growths may be contributing to or causing my IBS symptoms.

💛 “How has your case been treated?” 💛

Starting at age 17, I have tried at least ten types of birth control pills on and off. The pill has never been especially helpful, but now even the minimal relief has quit working. It was time for the next step.

Most patients try shots at this point, but for me these were ruled out. There was concern about long-lasting bad reactions considering my history with other medications, and some hormonal medication does not play well with bipolar disorder. The one shot my doctor brought up as a consideration is having a national shortage currently, so I lucked out on skipping that one. Since Orilissa has such a short-term window and risk of mental health complications, we also ruled that pill out.

💛 “Ok, but what about that surgery you mentioned??” 💛

On April 1, I’ll have a robot-assisted laparoscopic diagnosis and excision. Technically, the only “official” diagnosis for endometriosis is surgical. Diagnosis based on symptoms and family history is only guesswork, and endo doesn’t usually show up on ultrasounds. So that’s part of this surgical process.

The excision is the treatment part — any endometrial tissue will be cut off and pulled out. Laparoscopic surgery involves a few small excisions allowing tiny tools to be inserted, in this case using the daVinci robot. I’ll also get the Mirena IUD inserted while still under anesthesia, both for contraception and to regulate hormones and periods. My doctor thinks potential pain during insertion would be the only problem with me trying an IUD, so getting it while unconscious could help. Worst case scenario, Mirena doesn’t agree with me and we just pull it out.

Recovery process until I can work and function without assistance will take between 2-4 weeks. Another few months will pass before all swelling, sensitivity, and activity restrictions are over. I’ll be posting regular updates to (1) keep y’all informed, and (2) continue raising awareness of this condition and what treatment really looks like.

Thankfully, this procedure is covered by my insurance. I’ll still have co-pays and other expenses, which I hope will by covered by my tax refund and (if it ever drops) the upcoming third stimulus check. If you feel a desire to help out, I’ll take any links to super easy gluten-free/dairy-free recipes. Any financial donations should go to the Endometriosis Foundation of America, which I talked about in my previous post.

Research and scientific advances will help all of us; maybe the next generation can find a real cure.

Learn more about endometriosis in my first post: https://emeryrachellewrites.com/2021/03/10/endometriosis-awareness-month/