022: Ilene, Rape & Endometriosis Survivor
Uninvisible Pod with Lauren Freedman
Shownotes Transcript
In an effort to preserve this guest’s privacy, we are using an alias in this episode – an Uninvisible first! Ilene is an award-winning 6th-grade elementary school teacher. She is also a survivor of rape, “endometrial symptoms” (aka, undiagnosed endometriosis – chronic pain that was only compounded by her sexual assault), and hypothyroidism. She joins Lauren for a no-holds-barred conversation about her how her health and physical experiences have affected her emotional world, and informed the woman she is today. A note: while rape and sexual assault are not traditionally categorized as “invisible illnesses”, the emotional scarring these experiences can leave behind is most certainly a mental health issue – and a social issue, at that. We hope that by allowing Ilene to share her story, we can provide a platform of encouragement for survivors to speak their truth – whether that means they heal by sharing their stories, or heal by choosing not to. You are with us, and we are with you. We stand together.
**Listen in as Ilene shares… **
that never being officially diagnosed with endometriosis made her mentally tough: if doctors wouldn’t legitimize her pain, she wouldn’t, either – and she has taught herself, for better or for worse, to “push through”
that she learned she didn’t have a “normal” reproductive system because she got her period and was spotting very early
that she was diagnosed with hypothyroidism at the young age of 14, because she exhibited extreme fatigue
that she was put on birth control to regulate her periods, but quickly taken off it because it did not interact well with her thyroid medication – and luckily, her doctor spotted the issue (a risk of potential stroke)
that she had a cervical infection at 21 that gave her acidic discharge – the kind that burned through her underwear (this is not uncommon, and can be brought on by stress)
that her cervical infection and its subsequent doctor’s appointment allowed her doctor to find a cyst on her cervix which she removed
that she was raped the day she had the cyst on her cervix removed – after sharing with her rapist (a then-boyfriend) that she was not to have sex while the removal area healed
that, because of shame and embarrassment, she didn’t tell her doctor she had been raped when she went back the next day to have her cervix checked
that, looking back on her story, she was told over and over again by colleagues and medical professionals that she should be able to function normally with her painful periods
that, in grad school, she started having fainting spells associated with a regrowth of her cervical cyst and another cervical infection
how long it took her to acknowledge her experience with her former partner as rape
how meal and bathroom breaks as an elementary school teacher create a lot of inconveniences with regard to female reproductive system management, especially for people with pain and heavy bleeding (Ilene would carry extra pants and underwear, and would bleed through multiple pads AND tampons, as well as clothing) – while managing young children
that a doctor finally told her she could elect to have an invasive surgery to officially determine an endometriosis diagnosis – but Ilene opted out of the surgery, instead telling herself she didn’t have endometriosis, and was “not sick”
that she continued to have cervical cyst regrowth over the scar tissue caused by her rape – and she had to have the cyst removed 20+ times
that she dove into family history to understand her reproductive system
that her paternal aunt had once been diagnosed with a condition called “swampy uterus” – a reflection of how women are so often perceived by the medical system
that getting an IUD was a major factor in her physical recovery (once she got past the concern of hormone disruption); before that, it was regular monitoring of her hormone levels and fertility, which allowed her doctors to customize estrogen and progesterone shots. In addition, she had a light D&C (dilation & curettage), which is a procedure typically used to remove tissue from the uterus during or after a miscarriage or abortion, or to treat fibroids and polyps – and this scraping of her uterine lining was immensely helpful in reducing her symptoms and pain
that she has resisted the need for a hysterectomy because she wants to have children
that meeting someone else with endometriosis while on her journey to wellness helped to legitimize her own symptoms – she suddenly understood it was all real
that she channeled much of her rage at her rapist into blame for the pain in her body
her mantra: “You are unbreakable”
the moment when she lost her sh*t over the remarks of a male doctor-in-training – and her female nurse defended her
that her mother was also raped, and at knifepoint – and so she felt it was her duty to conceal the truth of her circumstances to her mother for a long time
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