Aileen McDonough is a 42 years old writer and communications professional who owns and runs 3 am Writers. She’s also a wife and a mother of two children who was definitively diagnosed with endometriosis in her mid-30s.
Early Endometriosis Pain
Aileen, too, had bad periods almost from the start. Her first period was at age 14, and she remembers it being painful enough in high school that her mom, who was a nurse, took her to a doctor pretty early on. She was put on prescription Naprosyn (the brand name for naproxen, an NSAID: nonsteroidal anti-inflammatory drug.) Although she felt her Mom was generally supportive, she approached it pragmatically, as in, ‘this is the problem and this is what I (as a nurse) know about dealing with it.’
Her Mom also had the perspective that, “we’re women, monthly pain is just what we deal with,” leaving Aileen resigned to the pain because she trusted her Mom and figured that was it; there weren’t any other answers. As a teen, it never occurred to her that her Mom, the nurse, might not know all the answers.
She has distinct memories of throwing up from the pain and then also being sick after starting Naprosyn because she wasn’t told to take it with food. Because the drug wasn’t doing enough and she was missing school, Aileen went on birth control for the first time in her late teens, well before her first sexual experience. It was the best option available to help mitigate her painful periods and keep her in school.
The pills did help, although she needed to try a multitude of them before finding one with somewhat manageable side effects. She continued this way for years up until she got married. Aileen stopped using birth control pills so she and her husband could start a family.
Endometriosis and Pregnancy
Aileen received a diagnosis of endometriosis when she was older, after a procedure called a laparoscopy. When Aileen looks back at her pre-laparoscopy health history, things begin to make more sense. While Aileen was pregnant the first time, she had a scary experience. She started to experience such severe abdominal pain that she ended up in the hospital—at the time the doctors thought Aileen had kidney stones. Now, years later, after the laparoscopy, her acupuncturist theorized the pain was caused by endometrial adhesions, her OB/GYN agrees.
“The pain was intense enough they put me on morphine while pregnant—they couldn’t do an ultrasound to confirm because of the fetus. I was in the hospital for five days and I was terrified for my baby … I was so worried he’d be born prematurely.”
Aileen’s pain abated and she was sent home. Although it came back briefly, it subsequently and mysteriously disappeared. Doctors surmise that the pain she experienced was due to lesions and adhesions breaking down or adhesions on the kidneys “unsticking” due to her pregnancy.
Thankfully, Aileen gave birth to a healthy son.
Aileen and her husband wanted a third child, and her doctor recommended it. Pregnancy is one of the solutions recommended for dealing with endometriosis because it can, but does not always, help the body rid itself of the unwanted endometrial tissue. Aileen thought there wouldn’t be any issues; she’d had two relatively uneventful pregnancies, kidney-stone scare aside. Although her daughter required a c-section, there’s no way to know if endometriosis played any part in that scenario. Endometriosis likely played a part in the fact that while attempting to get pregnant again, she miscarried twice.
Due to her endometriosis diagnosis, an ultrasound was ordered earlier than normal. Somewhere around week 8, Aileen discovered that the fetus was without a heartbeat. The doctors scheduled a DNC to avoid any life-threatening infections rather than wait to see if Aileen’s body would naturally release the pregnancy.
The second attempt, what would be her fourth pregnancy, was a similar experience, but she miscarried further along, right at the start of the second trimester, making the loss even harder for Aileen and her family. Reaching the end of the first trimester and thinking the pregnancy was safe, she and her husband had told her two other children about the baby. They brought the kids with them to the ultrasound ready to share and celebrate the experience as a family. Instead, they discovered that the fetus was without a heartbeat. When the doctor came in to read the results (because the technician is not permitted to give a patient this news), it hit hard.
“We had to tell the kids. They were waiting to see an ultrasound photo of their baby brother or sister and instead, we’re spirited out the back door. They get you out as fast as they can … and you want to get out because everyone around you is pregnant and all you want to do is break down and cry.”
Aileen loves her doctor, but she feels that there’s a definite need for more sensitivity. During one of the miscarriages, Aileen had to see an on-call male doctor who clearly hadn’t read her chart. She was put in a curtained “room” next to someone who was having an ultrasound for a healthy and successful pregnancy. The experience was emotionally excruciating.
Overall, Aileen’s experience does offer hope for women with endometriosis navigating pregnancies. “I had two healthy pregnancies and I got pregnant the first two times easily. I had NO real trouble carrying my first two children.”
In her 30s, and after her two successful pregnancies, Aileen was prompted by her acupuncturist to talk with her OB/GYN doctor about endometriosis. Her acupuncturist hadn’t talked with Aileen before because she assumed Aileen knew that was what she was dealing with was endometriosis pain. The truth was that Aileen didn’t know; all she knew was that something was wrong. At this point, Aileen was missing work, losing 3-4 days each month. As a self-employed woman, the interruptions had significant financial impact. So, Aileen made an appointment to see about getting some definitive answers.
Her doctor and Aileen decided things were bad enough that surgery, called laparoscopy, was warranted. The surgery would be to definitively diagnose and remove any endometriosis that was found. Even though the results were pretty stark, she felt relieved because before surgery she was thinking,
Instead, she was told, “You are full of endometriosis. Your insides are stuck and so full of adhesions, it’s as though someone poured crazy glue in there. It’s even on your kidneys.” This actually was helpful information because Aileen had also been diagnosed with Irritable Bowel Syndrome (IBS), which turned out to be endometriosis wreaking havoc with her bowels. Read more about IBS and endometriosis.)
Aileen remembers being horrified at the extent of her endometriosis. “I remember thinking, ‘how can something this invasive, this intrusive, be going on in my body without me really realizing it?”
The diagnosis gave her a sense of validation as well as relief. She’d been saying all along something was wrong, that it was more than just typical period pain, but she wasn’t really heard until this time. She was grateful it wasn’t cancer and although she received needed validation, the diagnosis didn’t offer any easy solutions to ending her endometriosis pain.
Side-Effects & Ongoing Pain Management
Over the years, Aileen has been on a large number of different birth control pills, sometimes feeling desperate to find the right one. They’ve helped mitigate her endometriosis pain, but too often have come with unmanageable side effects. At one point, she was not only experiencing endometriosis pain, but also getting intense and severe headaches as a side effect of the birth control pills.
Aileen currently still takes birth control pills and she still gets headaches, but she is managing them with her acupuncturist’s treatments and herbal remedies . Aileen isn’t ready a permanent solution like a partial or complete hysterectomy. She wanted to try acupuncture first because it’s less invasive, and for now, although she isn’t pain free, it IS manageable. She regularly sees an acupuncturist and, in her words, “will forever.”
“It’s the one time I can sit and talk and feel listened to, wholly. My acupuncturist looks at the whole picture of my endometriosis, digestion, and miscarriages as well as the rest of my life … disagreements with my husband, stressful work, etc. It all gets considered.”
Finding someone who hears Aileen—and all women—when it comes to pain shouldn’t be so hard, but it’s the result of a culture that is only just beginning to discuss women’s health—and pain—in deeper and more comprehensive ways. Just recently, in a February 2018 Quartz interview (then picked up by Marie Claire magazine, John Guillebaud, professor of reproductive health at University College London, said that patients have described the cramping pain as “almost as bad as having a heart attack.” For a doctor to repeat this … well, it’s a long-overdue validation for women everywhere who experience severe menstrual pain.
Social Isolation & Eliminating Shame
Aileen, who went to an all-girls Catholic school, was alone in her adolescent experience. She remembers times in which she felt “blown off” by friends when she had to decline an invitation, or back out of a plans. Aileen would call and say she couldn’t make it and her friends would always express surprise and give her the ‘No, you have to come out!’ response. Although no one actually said, ‘You’re being overly dramatic,’ that’s how her teen-self interpreted the interactions, and it didn’t feel good.
It was isolating because none of her peers were experiencing the same level of intensity with their periods. She does remember a male friend from that time whose girlfriend had endometriosis. That was the first time she heard the word but didn’t connect it to her own experience. She said she was thinking more about that girl and whether she’d be able to have children one day versus connecting it to her own monthly agony.
As an adult, Aileen’s surrounded by friends who are in her words, “pretty cool” about it all. She feels she has more supportive relationships now and is met with understanding and support when she cannot join her friends for events due to her symptoms. Aileen thinks that she has had it better than most women struggling with endometriosis. Between her current support, the attending of an all-girls school, and having women in her family who were able to advocate for her, she has had advantages. Despite those odds, she still experienced shame over the years as a result of her pain and endometriosis. Even now, a little shame is still there, much to her chagrin—and she wants to change that for herself and others.
“For my daughter, I have to create a feeling of NO SHAME around my period and my endometriosis. I want to be part of making it better for her. If we’re not talking about it, if we’re hiding behind shame, it’s not going to get better.”
Aileen knows it helps to talk about our experiences with other women—especially those close to us. She understands that open dialogue and being held in our vulnerability allows women to feel heard and provides much-needed support. The act of sharing our experiences can reduce the shame and stigma surrounding women’s periods. She says,
Genetics Bring Concerns
Aileen’s use of birth control pills since after her children were born, means that while she’s been a parent, her children haven’t seen her outwardly experiencing debilitating endometriosis pain, which is a good thing. However, Aileen is concerned for her daughter, because research has recently shown a genetic component to endometriosis.
Aileen is determined to be there for her daughter, to help her through whatever her menstrual experience will be. Although she hopes her daughter won’t have the same painful experience, she believes it’s a real possibility. When I asked her how that made her feel, her response was clear and heartfelt.
She’s determined to be “hypervigilant” to ensure her daughter gets what she needs for pain. It’s telling that the problem hasn’t yet presented itself, but she’s already gearing for battle.
Aileen knows that if she sees signs that her daughter is dealing with endometriosis pain, she’ll push for an earlier diagnosis. She knows she’ll have to fight on her behalf because there just aren’t great solutions available yet, and women’s pain is still too often dismissed or diminished. The fact of the matter is, she doesn’t want her daughter isolated and waiting 10-15-20 years to know what’s going on in her body. Even so, Aileen’s leery because she knows that the only way to achieve a diagnosis is an invasive procedure. Putting her daughter, whether as a young girl or woman, through surgery just isn’t something she wants to do.
Aileen does takes some small comfort from the fact that if her daughter does have endometriosis, she has a parent who can be fully empathetic and who can provide compassionate support—she’ll know exactly what her daughter is experiencing. Of course, she still hopes and prays her daughter will have an easier time.
THANK YOU, Aileen, for sharing your story with me and with Heard. Healed. Honored. And, as always, thank you, Liana, for bearing witness and holding space for the stories to be told.