Endometriosis is a condition in which tissue like the endometrium—typically found in uterine lining—develops outside the uterus. The most common symptom is extreme pain during or around a person’s time of menstruation, and for some, “this pain may be disabling and may happen during or after sex, or during bowel movements or urination.”
In some cases, patients experience constant pelvic or lower back pain as a result of the tissue growth. While there is no known cure for endometriosis, there are several ways doctors recommend their patients control their symptoms using medication, in addition to excision surgery to remove excess tissue. Hormonal contraceptives, for example, are believed to curb the growth of the endometrium outside the uterus and provide pain relief.
If the Pill does not provide enough relief, however, many doctors recommend their patients try Lupron, an injectable medicine which “treats endometriosis, uterine fibroids, and premature puberty.” Although many endometriosis patients report positive outcomes, it is not a cure-all. Every patient’s experience is different, and some find the adverse side effects outweigh any positive impact the drug has on their condition.
The benefits and dangers of lupron
Lupron reduces the amount of estrogen a person’s body produces, which can both help manage endometriosis symptoms and have negative effects. Decreased estrogen production can cause headaches, mood swings, hot flashes, and infertility.
Oftentimes, warning labels or doctors list these side effects individually, but rarely do they use the word “menopause.” But menopause is the reality of Lupron for many patients. This process is permanent. Once someone reaches menopause, the changes to their body cannot be undone. These massive changes to a person’s physiology can trigger mental and emotional distress that may manifest in mood disorders and even, in some cases, suicidal tendencies.
Whether or not a person has endometriosis or has taken Lupron, common symptoms of earlier-than-average menopause include increased stress, anxiety, and depression. These conditions “often result from infertility and other early menopause health issues.” In other words, the changes patients face when their bodies undergo this process earlier than expected take a toll on their mental health, that may be unrelated to the physiological hormone changes taking place.
The side effects of Lupron: real women’s stories
Sometimes, this anxiety stems from a feeling of betrayal or misinformation from a patient’s medical team. Michelle Johnson, a 41-year-old woman from Illinois, said her doctors downplayed the side effects of Lupron so much that she never saw any of the realities of the drug coming. She says reducing the drug’s side effects to hot flashes and mood swings minimizes the realities of the treatment and misleads patients.
“Nobody told me anything about any of these side effects, they just made it seem like you get flushed from time to time, you get a little bit of dry mouth,” Johnson said. “I still bruise very easily, I still have problems with my teeth, and I still have scarring from the acne, from the breakouts I was suffering. That was emotionally damaging to me because I didn’t like the way I looked.”
In other cases, social pressure causes prematurely infertile patients to feel depressed in the wake of their Lupron treatment. From gender essentialist norms that put disproportionate pressure on women and feminine-presenting people to bear children to conventional standards of beauty, there are many outside forces making endometriosis patients feel insecure as their bodies endure Lupron’s side effects.
“As a woman, you already feel vulnerable because your reproductive system is under attack, so you already don’t feel like you’re a whole woman,” Johnson explained. “You already don’t feel beautiful and attractive, but then with the side effects of the Lupron on top of the scars from surgery, that just made me feel self-conscious.”
LaTasha Neal, a 30-year-old woman from Delaware, reported similar feelings of defeat when she found out she could no longer have children, on top of already having suffered severe weight gain following the start of her Lupron treatment.
“I kind of shut out to the world because it made me feel like I was worthless because I felt like I couldn’t contribute to procreation,” Ms. Neal said. “It made me feel less of a woman.”
Treating endometriosis with premature menopause
Not all younger-than-average menopausal patients with endometriosis are necessarily taking Lupron, though. Karen Smoger, 33, of Pennsylvania went through menopause after having several organs surgically removed—including her uterus, cervix, and ovaries—to treat her endometriosis symptoms. Leading up to her diagnosis, she experienced body dysmorphia and was actually incorrectly diagnosed with bipolar disorder as a result.
Although the long, painful process of getting diagnosed and undergoing several surgeries was painful and, at times, traumatizing, she said she feels the route she chose was the best for her. Her journey to a pain-free life has allowed her to get back in touch with her physical self and feel comfortable in her own skin again.
“I still feel very open, wounded, raw, but I have a whole new perspective, and I’m a lot calmer and I feel a lot more centered,” she said. “The psychological weirdness of not having any of my female reproductive organs anymore is there, but finally, inside I feel like the person I see in the mirror.”
Despite suffering multiple miscarriages throughout this process and the difficult conversations Smoger has had with her husband about infertility and possibly adopting a child in the future, she did note significant improvements in their sex life—something many endometriosis patients hope to achieve in their treatment.
“I don’t have to take a ton of drugs anymore,” she explained. “I did it to repair the sexual relationship and the intimacy between my husband and I, and it worked. It took a while, and there are still certain things that incite uncontrollable panic attacks, but those are physical reactions to the trauma I’ve dealt with. That’s not him or sex specifically.”
Though all endometriosis patients have different experiences with treatments, one thing is certain: it’s a long, uphill battle. Going through menopause at a young age is a common experience for endometriosis patients. For some, that process brings anxiety while it brings relief to others. But every endometriosis patient seems to turn a difficult situation into positive action.
Neal is in the early stages of creating a charity in her home state to help patients like herself who do not have insurance but need specialized care for endometriosis. Johnson wrote a book, Fighting Fiercely: Unveiling The Unknown About Endometriosis, to empower young endometriosis patients to make educated decisions about treatment options and the road ahead. Ms. Smoger says she’s living nearly pain-free and she advocates for young patients’ agency as they begin seeking care. Whether it’s prayer, yoga, support groups, or advocacy work, endometriosis patients prove resilience time and again as they battle this disease.
“I take that depressed energy, and I use it to try to help other people get through the same situation,” Neal said. “I just try to make it better for other people.”