“Female Trouble”
Around this time in 2016, I had just moved to Portland, Oregon. I was filled with optimism and excitement to be starting a new chapter in my life. I had no idea what was in store.
For the next seven years, I would find myself locked in struggle with a chronic invisible illness—one that wrecked both my mental and physical health.
I think many people assumed that my description of fibroids, a physical ailment, was just a cover story for mental illness.
My overwhelming conclusion is that it is impossible to separate mental health from physical health.
The illness in question was fibroids, which eventually progressed into severe anemia and menorrhagia. And it wasn’t quite invisible. I got the diagnosis in 2016, just one month before moving across the country. The symptoms quickly progressed from minor inconvenience to serious health problem, but I was reluctant to give up the dream of having biological children. Eventually, the bleeding became too heavy for me to attend meetings in-person or risk sitting down in a public place.
It took two surgeries (a laser hysteroscopy in the fall of 2021, followed by full laparoscopic hysterectomy with ovaries intact one year later) to address the core problem. During that last year, I was always tired and slept as many as 12 hours each day. I had a “never ending period” that lasted approximately six months. In the weeks leading up to the second surgery, my iron levels were so low that I had to come into a clinic once per week to get an iron transfusion. My doctor told me that when I had my uterus removed, it was enlarged to the equivalent of being five months pregnant. I was 45 years old.
I wish I could get those seven years back, but I can’t. The next best thing I can do is share what I learned.
Things I Wish I Had Known
# 1 — You can keep your ovaries after a hysterectomy.
# 2 — Anemia doesn’t just cause fatigue — it can cause hair loss, heart irregularities, bruising, scabbing, and even bone fractures.
# 3 — If you take iron supplements along with your morning coffee, the caffeine will interfere with iron absorption. You will also need to take Vitamin C with most over-the-counter iron supplements, and with vegetarian sources of iron such as chickpeas and tofu.
# 4 — The hormone-based medications used to treat fibroids can change your personality.
# 5 — Ditto for PTSD.
# 6 — Also IUD’s.
# 7 — Worst of all for me — progesterone when prescribed as HRT.
# 8 — Having a hysterectomy will change your hormonal balance. My surgery was successful and the recovery was nearly pain-free. Six weeks later, I had panic attacks for the first time in my life. I didn’t know what they were. I woke up from a nightmare and felt as if I couldn’t breathe.
Good Advice in General
- Give yourself plenty of time to recover after a hysterectomy. Go easy on yourself — not just physically, but mentally and emotionally. Avoid travel, major work commitments, and new stressors for at least the first two months.
- If you do pursue HRT, or try any new type of medication as a treatment for PMDD / PME, be sure that someone who knows you well can follow you or check in with you. Synthetic and bioidentical hormones can be life saving and make a tremendous positive impact for patients, but they are not “one size fits all.” Similar to steroids or SSRI antidepressants, they can cause intense side effects — even psychosis — in some patients.
- Always be sure you have access to primary care in your local community. ACA coverage varies greatly from state to state.This is especially important when undertaking a temporary move (for a relationship, a job, a study opportunity, or caregiving) as women often do. Double check before you sign a lease or give up your old living space!
Even though up to 70 percent of women will experience fibroids in their lifetimes, there is still considerable shame and silence around discussing menstruation or reproductive health disorders. And there is virtually no research exploring how the prolonged and heavy periods associated with fibroids impact the cluster of mental health symptoms referred to as PMDD / PME. Nor are there any longitudinal studies tracking the impact of hysterectomy on symptoms for women with a previous mental health diagnosis of any type — dismaying, given that the surgery is performed more than half a million times every year in the United States.
What I know from personal experience was that the gamut of hormone-based treatments for fibroids (IUD, depo provera, and progestin) changed my personality and my interpersonal style — to an extent that was noticeable to others. While I was waiting for surgery to remove the benign tumors in my uterus, I was losing the equivalent of two blood transfusions every month. I absolutely needed those meds, but I wish someone had warned me that they could make me combative and paranoid. Around the same time that I first ended up in the ER from hemorrhage, I had my car stolen, my computer network hacked, and a break-in to my apartment. The events were deeply unsettling, and I was concerned that people I knew might have been connected to them. I shared my concerns and was labeled paranoid.
Later, I tried to explain to the same people that I was on heavy medication at the time of the accusations. Some bridges were rebuilt, but not all. I think many people assumed that my description of fibroids, a physical ailment, was just a cover story for mental illness.
My overwhelming conclusion is that it is impossible to separate mental health from physical health. Many conditions that may be identified as mental health diagnoses turn out to have physical causes (Lyme Disease, brain tumors, stroke, Parkinson’s, and long COVID) or stem from adverse drug reactions. I always knew that hormones and my cycle played a role in my moods, but it wasn’t until a failed experiment with progesterone as HRT, six months after my surgery, that I had conclusive evidence that my response was atypical.
Later, two different clinicians confirmed that at my age I did not need progesterone as HRT and that my extreme reaction (brain fog, fatigue, heaviness in joints and limbs) was a clear indicator of PMDD. Starting, then abruptly stopping, this medication made the side effects much worse and left me temporarily immunocompromised. I experienced intense pain in my hands and feet and developed a COVID-like bacterial respiratory infection that lasted several months. I didn’t completely recover until August of this year. I kept quarantine, which isolated me socially.
As I struggled to put the pieces of my life back together, finding women with similar stories through IAPMD.org and other online forums helped me feel less alone. Learning that hormones played a role was incredibly empowering. I might not have a cure but at least I knew the cause. The unknown is the most frightening specter of all, both to ourselves and to our loved ones.
I still don’t know what the long term outlook is for me. I have been healthy and medication-free for three months. I drink soy milk (a natural source of estrogen) and take Vitamin D and fish oil, in addition to other supplements. I work out. Because I was completely incapacitated for several months following my surgery, it hasn’t been easy to find another full-time job. In the meantime, my priority is staying healthy and well.
I only wish we had more and better information to help chart a course. The “double whammy” of stigma around both menstruation and mental health is a contributing factor. I was reluctant to share my problems on social media, not because I was shy or ashamed, but because I was single! Talking about an impending or recent hysterectomy felt like the least sexy topic in the world. Likewise, many times bosses or coworkers don’t even know what fibroids are. Or they think it’s just a heavy period. Try to explain just how severe and debilitating they are, and you risk grossing people out.
There is absolutely no excuse for these attitudes but they will not change overnight. Many people don’t even know what fibroids and PMDD are. They may not understand how serious they can become, or the limitations they place on our mobility and interactions in social settings.
I do what I can to raise awareness. Most of all, I’m just grateful for every day of health and clarity.
Please understand that my story is only one of many possible outcomes. Our bodies and life paths are incredibly diverse. Trust your own experience and don’t be afraid to ask for help!
