Today we’re sharing an episode from a podcast we love called Tightlipped. Tightlipped is dedicated to storytelling and focusing on women living with persistent vaginal and pelvic pain. They are fighting for a world where those with these conditions are diagnosed correctly, treated effectively, and given compassionate care.
This episode chronicles the writer & advocate Lara Parker’s history with medical gaslighting and battle to get a diagnosis for her symptoms of Endometriosis.
Ellen Lee Scanlon (00:00):
This podcast discusses cannabis and is intended for audiences 21 and over. Welcome to How to Do the Pot, a podcast de-mystifying cannabis for women, I’m Ellen Scanlon. At How to Do the Pot, we love to share stories about women navigating the complexities of the modern world of weed, but it’s not just cannabis that needs to be demystified, women’s health is an underserved area in general.
Ellen Lee Scanlon (00:31):
Today, I want to share an episode of a podcast called Tight Lipped. Like How to Do the Pot, Tight Lipped is dedicated to storytelling, and the show focuses specifically on women living with persistent vaginal and pelvic pain. Tight Lipped is not only a podcast, it’s a growing grassroots movement. They are fighting for a world where women with these conditions are diagnosed correctly, treated effectively, and given compassionate care. The episode that you’ll hear now, chronicles the writer and advocate, Lara Parker’s battle to get a diagnosis for her symptoms of endometriosis.
Ellen Lee Scanlon (01:10):
The episode talks about something called medical gaslighting, which is when medical practitioners blame a patient’s illness or symptoms on psychological factors, or even deny a patient’s illness entirely. For example, wrongly telling patients that they’re not sick. You may have heard our episode 57 about endometriosis, an often painful disease that affects one in 10 women worldwide. That is a lot of women, and it’s very likely that you know a woman with endo, but did you know that one in 10 men have erectile dysfunction and there are more than 20 FDA approved drugs to treat it? But endometriosis, most people have never even heard of it and I am not okay with that. I have endometriosis and I use cannabis to treat it. For me, it really is like magic. It helps so much with my painful symptoms.
Ellen Lee Scanlon (02:04):
In episode 57, which is one of our most popular episodes, we shared the stories of two amazing women who have used their endo diagnosis to help other women. Kerrigan Behrens of the CBD company, Sagely Naturals. And Jessica Murnane, the author of a book I highly recommend called Know Your Endo. Bact to today’s episode of Tight Lipped. We are very grateful to the team at Tight Lipped for talking about these conditions that so many women deal with often alone or with very little support. If this resonates with you, I hope Lara’s story provides some hope and the knowledge that you are not alone. Lara also shares her story in her book, which is called Vagina Problems, so check that out too. Now, here’s the episode of Tight Lipped.
When Lara Parker was in college, she went out on a run. Suddenly, she doubled over. It felt like someone was ripping her open from the inside out.
Lara Parker (03:04):
I just was overcome with the worst abdominal pain I’ve ever experienced in my life. I crawled to the women’s bathroom. I was screaming, vomiting, writhing in pain, delirious with pain, started hyperventilating.
Somehow, she managed to reach a friend who called an ambulance.
Lara Parker (03:24):
The doctor at the ER, after I arrived in an ambulance mind you, literally told me to just take Ibuprofen next time.
The doctor said it was just period cramps, that Advil should do the trick, except Lara wasn’t even on her period. When her dad got to the hospital, he was just as shocked and upset by the doctor’s response. That made Lara feel better. She insisted that it couldn’t possibly be period cramps, but as the pain meds kicked in she started to question herself.
Lara Parker (04:01):
You know once they get the drugs in you, once the IV starts to hit and your pain lessens, and you come out of it and you’re like, “Okay, well maybe I’m like just being dramatic.”
But it was real. The pain was from an ovarian cyst bursting inside of her. Even so, the experience in the ER made it harder for Lara to trust her own instincts.
Lara Parker (04:27):
When I think back on when I started to question my own sanity, it was that moment.
This is Tight Lipped, a public conversation about a private type of pain, I’m Noa. On this show, we ask big questions about chronic vaginal and vulvar pain, and pelvic floor dysfunction. We talk about painful sex, and shame, and the politics surrounding these conditions that we often keep secret. In past episodes, we’ve heard how doctors and others often dismiss vaginal pain. In this episode, we’re talking about something a little different, when we start to question ourselves, when our reality becomes cloudy and foggy and we stop trusting our own lived experiences. We’re talking about what some patient advocates call medical gaslighting. When a healthcare provider makes you question your sanity, or if your symptoms are real. We want to know what the consequences are of not being believed.
Did I dream? Did I really, really dream? Dream, dream.
Yes, Paula, you dreamed it. You dreamed all day long.
That’s the 1944 film Gaslight based on a play by Patrick Hamilton. In the story, Gregory is trying to isolate and confuse his wife, Paula. He turns the gas lights in the house on an off, and then insists that she’s imagining it.
Are you telling me that I’ve dreamed…
All that happened?
All that did not happen.
Gregory wants to make Paula question her sanity. He wants her to be institutionalized in an asylum so that he can inherit her fortune. Psychologists in the 1970s began using the word gaslight as a clinical term to describe the abuse portrayed in the film. To be clear gaslighting is often used to describe a specific form of domestic abuse. When a partner, family member, or intimate figure tries to manipulate someone repeatedly convincing them that what they think happened, didn’t. Dr. Paige Sweet has done research on how gaslighting works. Sweet is a sociologist and postdoctoral fellow at Harvard. She emphasizes that gaslighting happens when people have a relationship to each other, and one person has some sort of social power over the other. Meaning a random person walking down the street, can’t gaslight you.
Paige Sweet (07:23):
There’s a hierarchical relationship of some kind. Then the person who’s on the lower end of that hierarchy can be vulnerable to abuse and manipulation.
Sweet argues that gaslighting is rooted in a power imbalance. She interviewed women who were gaslit in the context of domestic abuse.
Paige Sweet (07:44):
The person who’s doing the gaslighting uses inequalities or stereotypes, let’s say related to gender, to sexuality, to race, to class, to make them doubt their sense of reality, to erode their autonomy, to isolate them.
This gaslighting had a lasting impact on the women Sweet spoke with.
Paige Sweet (08:07):
There’s no one else because I’m very isolated in an abusive relationship. I’m not able to have someone else confirm that my reality is in fact reality, so gaslighting can really cut people off from social resources that they need and deserve.
The women said they became overly dependent on their abusers and they blame themselves for things that weren’t their fault, including the abuse itself. These are just some of the many consequences they faced from being gaslit. There are differences between the gaslighting and domestic abuse settings and medical gaslighting, but many of the consequences are the same. That’s why some healthcare advocates have started using the term medical gaslighting, much like in Lara Parker’s experience. At the beginning of this episode, we heard Lara’s story of going to the ER. There she was told that her extreme pain and the fact that she’d passed out was because she was on her period. Lara’s life has been punctuated by pain, and every time she sought answers, her experiences have been dismissed.
She lives with pain all over her body. When the pain first started, it seemed like she just had a lot of unrelated symptoms. There were digestive issues like nausea and bloating, and she had really painful periods, horrible cramps, throwing up and pain with tampons and pelvic exams. In high school, she passed out from pain and her mom took her to urgent care. As Lara started explaining what happened, the doctor stopped her. She pointed to a pin on Lara’s jacket, which was in memory of one of her best friends who had recently passed away in a car accident. The doctor closed her notebook.
Lara Parker (10:06):
And just started talking to my mom about how I was actually just sad and seeking attention and like acting out, and then she just left the room.
Lara and her mom sat there silent and stunned. Of course, she was struggling with grief, but she’d also just passed out from pain.
Lara Parker (10:26):
Instead of actually talking to me, looking into my symptoms, she was just like, you’re sad and you want attention.
Unfortunately, this was just the beginning of Lara’s experiences with medical gaslighting. But why did these moments have such an impact? Why does medical gaslighting lead people to doubt themselves? Dr. Bekah Shallcross is a clinical psychologist and research fellow at the university of Leeds. She says that this is in part because of the power imbalance between medical professionals and patients. Shallcross conducted a study in 2018 of women in the UK with vulvodynia. Vulvodynia means chronic vulvar pain, burning, rawness, stinging, without a clear cause. Many of the women in the study felt like they had to agree with whatever their doctor said.
Bekah Shallcross (11:22):
Traditionally, or historically there is a sort of yes doctor culture. There’s definitely a deferring to a doctor as knowing best.
Shallcross found that even women who had done their own research had difficulty contradicting their doctor.
Bekah Shallcross (11:40):
There was one woman who took a vulvodynia leaflet with her, to the doctor and the doctor basically told her off. He was like, my job is to tell you what’s wrong with you.
Lara went through something similar.
Lara Parker (11:55):
No one really knows what to do in a situation where a medical professional is either A, telling you that what you’re feeling isn’t real or B, just like not doing their job. They’re in a position of power, you’re not.
Lara was getting waves of extreme pain in her abdomen and she was having excruciating pain with penetrative sex.
Lara Parker (12:15):
The guy that I was seeing said to me, like what is wrong with you? so I knew that maybe me screaming out in pain wasn’t the normal reaction that he got.
After years of consistent pain, something shifted.
Lara Parker (12:32):
So the painful sex, because it was just absolutely humiliating and just left me feeling brokenhearted. That was sort of the fuel to my fire of wanting to figure out what was going on with me.
She started Googling, she looked up painful stomach while running, that led her down a rabbit hole to a new term endometriosis, endo for short. Endometriosis is a condition where tissue that’s similar to the lining of the uterus grows in other parts of the body, it impacts 10% of people with vaginas. Like many of the conditions we’ve talked about, it’s pretty common but on average, it takes 7 to 10 years for people with endo to get diagnosed. Having a name for her pain gave Lara direction, so in 2012, she approached a new doctor who she still thinks about to this day.
Lara Parker (13:35):
And what’s interesting about him is that he believed me, at first.
That felt significant, Lara could build a relationship with him, she could trust him. He agreed that she had the symptoms of endometriosis, including painful and heavy periods, abdominal pain, bloating, and pain during sex. But endo can only be diagnosed through a laparoscopic surgery, and Lara wanted a diagnosis.
Lara Parker (14:06):
He was so ready to do this surgery. He was like, yes, I’m sure you have it. Let’s do this. Let’s treat it.
She thought it was straightforward, identify and remove the abnormal tissue and move on with her life. The doctor did the surgery and found endometriosis, but instead of helping the surgery made her pain worse.
Lara Parker (14:30):
Couldn’t wear underwear, was in way more pain, my stomach looked like I was four months pregnant at all time, I couldn’t eat anything. Like, I mean, my pain went from being what I thought was terrible to like unbearable.
Lara didn’t know why this was happening. Before the surgery she had vulvar and vaginal pain, but not all the time. After the surgery, she described her vagina as an angry swarm of bees. Lara told the doctor that she was feeling way worse.
Lara Parker (15:04):
He was basically like, no, you’re not.
Lara was taken aback. She wrote back to him over email.
Lara Parker (15:11):
Telling him that I could barely get out of bed every day. That I was feeling so much worse after the surgery. I couldn’t understand what was going on.
But he thought the surgery should have solved the problem.
Lara Parker (15:22):
He basically was like, well, it’s not the endometriosis because we got rid of that.
What the doctor didn’t tell Lara or maybe didn’t know, is that treating endometriosis is a whole lot of trial and error. There’s no cure. Most patients try some combination of hormones, surgery, and pain management.
Lara Parker (15:44):
And then he told me that it was probably due to my diet, and then told his secretary to tell me to not drink so much alcohol and eat so much bread.
But Lara was barely drinking or eating, she was miserable. Remember earlier how we talked about the yes doctor culture, that power dynamic that leads patients to feel like they can’t contradict their doctor. Professor Carly Smith is a clinical psychologist who studies institutions, including the health care system. She says the doctor-patient power dynamic can lead patients to blame themselves for things that aren’t their fault, like Lara’s excruciating pain.
Carly Smith (16:28):
If someone with a lot more power, and a lot more knowledge, and a lot more expertise is saying like, if you had gone to all eight of your physical therapy appointments, then this probably would be better quicker.
Even the most self-aware patients might take on the blame for why their symptoms aren’t improving. This is one of the key consequences of gaslighting, self-blame.
Carly Smith (16:53):
You have so much more knowledge about your own behavior and how much control you have over it. And so when someone suggests like it was probably because of something that you did or something that you didn’t do, that is much easier to believe.
Lara’s doctor continued to put the responsibility on her for her ongoing pain. She had left to study abroad after the surgery, so when she got back, she set up an appointment. Lara told the doctor again how horrible she was feeling, and that sex was still extremely painful for her.
Lara Parker (17:31):
And as soon as I said that, he was like, you need to be tested for an STD since you were in Australia. And I was like, wait, what? And he was like, well, clearly you had sex while you were there. I assume it was unprotected. And I was like, it wasn’t but okay.
Lara was convinced this was not an STD, but she went ahead and got tested anyway. And for painful sex, he said to just try a different position. As each month went by Lara’s pain got worse. It continued throughout her last year of college.
Lara Parker (18:08):
I was bedridden, I was extremely depressed, I was barely making it to class, I was flunking my math class. I was about to get fired from my internship because I was missing so many days.
Lara was in pain all the time, but the doctor’s responses, it’s an STD, you’re drinking too much, try a new sex position, just put the blame on her.
Lara Parker (18:35):
And there was like a distinct moment that I remember I was just like laying on my dorm twin bed, bawling my eyes out and saying to myself like, am I just imagining this? Like, am I really that fucked up in the head that I am imagining all of this pain, and like everything that’s gone wrong?
Did I dream? Did I really, really dream…
Like Paula from Gaslight, Lara was losing her sense of reality. And her doctor like Gregory was telling her she couldn’t possibly still have endometriosis, she was imagining it.
Lara Parker (19:15):
Like what is wrong with me? I really thought that I was losing it. It got to the point where, and I still to this day am like this where I don’t trust my own thoughts and feelings.
Professor Carly Smith says this is what gaslighting often does to people.
Carly Smith (19:33):
It really kind of chips away at people’s trust in their own intuition and trust in their own sense of reality, quite honestly.
This is the fundamental consequence of gaslighting, losing your ability to trust your own lived experience. The medical gaslighting was having a clear impact on Lara, but still Lara kept going back to her doctor for advice. After all, he was the first doctor to take her seriously. It requires a lot of effort, time, and money to find a new doctor or clinic, so it makes sense that people want to do what’s necessary to stay in the relationship with their current doctor.
Lara Parker (20:18):
If you have a really serious medical condition, you simply need healthcare, you just do. You don’t really have the option to be like, I will deal with this on my own, I will do this surgery on my own. That’s not really an option.
And Lara couldn’t do it on her own, which is why she kept going back. And it’s not just that, another consequence of medical gaslighting is difficulty remembering.
Carly Smith (20:42):
Where someone over time starts realizing, since I’m like pretty often getting the details of my healthcare appointments wrong, like maybe I’m bad at remembering. Or maybe I just like, don’t really know what I’m talking about, maybe the pain wasn’t that bad.
Medical gaslighting can impact your memory. It’s part of why advocates remind patients to write down all their questions before an appointment. Smith says it can become harder to remember health details and events surrounding the gaslighting.
Carly Smith (21:13):
Being in a situation where the best and most adaptive response is to kind of deny your own experience makes people so, so vulnerable to going along with things that they wouldn’t otherwise.
People will undermine themselves to preserve the relationship. By this point, Lara had experienced so many of the consequences of medical gaslighting. She had difficulty trusting her own take on reality, she took on the blame for things that weren’t her fault, she had trouble remembering her healthcare interactions, and she became dependent on a doctor who wasn’t helping her. But despite all the gaslighting, Lara still knew that the surgery had aggravated something in her body, and the pain was still getting worse. After months of back and forth, she decided it was time to seek advice elsewhere. She’d heard that in the Midwest, the best place to go was the Mayo Clinic. Lara requested her records so that she could take them with her.
Lara Parker (22:17):
His office straight up refused, so I kept requesting them to send it and he basically had his office staff tell me that I was being dramatic and that I didn’t need to go to Mayo Clinic.
Lara was trapped. She needed to see a new doctor because her old doctor wouldn’t believe her, but she needed her old doctor to believe her in order to get a referral or at least her records. Dr. Bekah Shallcross’s research shows that many women share Lara’s dilemma.
Bekah Shallcross (22:49):
Women talked about, well, I’m not going to say anything, because I didn’t want it to affect whether I get that referral, or I get that treatment, or I’m taken seriously or not.
Yet another implication of medical gaslighting, patients felt that they needed to be on good terms with the office staff as well as their doctor.
Bekah Shallcross (23:10):
You know, that idea of having to be nice, having to be good, having to be not too neurotic, or not too aggressive.
Professor Carly Smith says that sometimes doctors will make notes in patients charts, making clear that the patient is exaggerating or making up their symptoms. These labels can make it even more likely that you’ll be gaslit again, in the future. Eventually Lara went to the office and demanded they give her, her records.
Lara Parker (23:39):
Attached to them was a note from the doctor explaining that I was being dramatic, that he had treated me for endometriosis, and that my subsequent symptoms were not related.
Lara still thinks about this doctor a lot.
Lara Parker (23:54):
I had, had such mistrust and then I found him and I was like, I can believe him, I can trust him. And it turns out that he was maybe the worst one of all.
As you might’ve guessed Lara’s endometriosis was far from gone, she was right all along, even though the doctor had said that wasn’t possible. Lara did end up going to the Mayo Clinic, there she was diagnosed with pelvic floor dysfunction and eventually with vulvodynia as well. She’d developed vulvodynia from the surgery, that constant burning, the reason she was always having to sit on an ice pack.
Lara Parker (24:37):
Eventually I got to the place where my pain was getting so bad that I wasn’t able to work 40 hours a week. I was miserable. I was getting stoned out of my gourd, like every single day in order to function.
Years went by, she tried all sorts of treatments. And after much thought and research, Lara decided it was time to try surgery again for her endometriosis. In January 2020, 7 years after her first visit to the Mayo Clinic, she prepared for what’s called excision surgery, cutting the endometriosis out at the root. Lara found a skilled doctor who specializes in endo, going into the surgery felt different from last time, she had spent years researching and educating herself.
Lara Parker (25:27):
I was so ready to find out, like I was excited. I am going to know what the fuck is going on inside my body.
And that’s exactly what happened.
Lara Parker (25:38):
And she removed, I think 21 places of suspected endometriosis.
The surgeon removed lesions from her bladder, her ovaries, her intestines, and many other places. And that’s not all.
Lara Parker (25:52):
She also had to remove a cyst, and then they also removed my appendix as well.
The doctor also confirmed that she had Adenomyosis, a sister condition to endo. When the endometrial tissue grows into the muscular wall of the uterus. Lara asked her surgeon what she thought happened during her first surgery, and she said that the previous doctor did her no favors.
Lara Parker (26:18):
Essentially what it actually did was not remove anything and burn the area around the endometriosis, causing it to be more inflamed.
Lara’s extreme pain that had developed was related to the first surgery. It’s hard to pinpoint exactly why the surgery made things so much worse. The doctor didn’t do the surgery well, and didn’t get rid of the lesions. Afterwards, he didn’t refer Lara to pelvic floor physical therapy. And endometriosis causes inflammation and is a progressive disease. Lara had gone years without treatment.
Lara Parker (26:57):
I’m not going to lie and say that it didn’t feel good to hear her say that she found over 20 pieces. Like to me, it’s like, okay, there was something in there destroying me.
This is one more consequence to add to our list. Medical gaslighting also impacts our physical health, so much of Lara’s experience is an example of that. Professor Carly Smith says that experiencing betrayal and gaslighting in a healthcare system can have lasting physical impact. And of course Lara’s journey in the healthcare system, and her experience of medical gaslighting also had a financial impact. She spent so much money trying to treat her pain. Her second surgery actually wasn’t covered by insurance at all, so she had to pay $15,000 out of pocket. She’s not alone. On average, a person with endo spends over $3,000 a year on direct healthcare costs. Lara is in the process of recovering from excision surgery. It can take between three months to a year and while she is still suffering from chronic pain, she has moments of hope.
Lara Parker (28:14):
I had this moment, like maybe two weeks ago where I caught myself just like walking around my apartment singing. And I just felt like lighter, and happier, and like I could breathe, and like there wasn’t this weight on my chest.
Lara says that she’s just starting to deal with the psychological trauma and impact of what she’s been through.
Lara Parker (28:37):
I of course still have some work to do in pelvic floor physical therapy, et cetera. But to be honest, my focus moving forward is really on the idea of like the body keeping score. And I really don’t believe that I’m going to find that relief from my pain truly until I work through that trauma.
The body keeps score, a phrase and idea that comes from Trauma Researcher Dr. Bessel van der Kolk, meaning that our bodies hold and remember trauma. It’s hard for Lara not to let the years of medical gaslighting continue to influence her, like when she’s talking to the endo doctor who did her recent surgery.
Lara Parker (29:22):
And still sometimes she will say things to me or ask me a question about what I’m eating or something. And I will immediately become so defensive. I will put my guard up so high, I just like will shut down. I won’t talk to her. I’ll just like start crying.
Medical gaslighting has real long-term consequences for mental and emotional health. And Lara is still unpacking the relationship between her physical symptoms and her emotional experience.
Lara Parker (29:51):
All of my symptoms became very apparent in the year after my best friend passed away, which was obviously a very traumatic time in my life. Deep down I always knew that yes, I was depressed, but I was also dealing with something real and something was wrong with my body.
Lara’s story demonstrates what an impact medical gaslighting can have on people. There are so many lasting consequences losing your ability to trust your own lived experience, blaming yourself for things that aren’t your fault, becoming dependent on a provider who isn’t helping you. It can impact your memory, your finances, and your long-term physical and emotional health. And there are so many people who have experienced this.
Speaker 9 (30:43):
I felt like no one else really thought it was a problem, and so why should I?
Speaker 10 (30:48):
It creates uncertainty, it puts the blame on you in a very subtle way.
Speaker 11 (30:55):
This started a vicious cycle of anxiety that I pushed through for many years, until I found a doctor who diagnosed me.
Speaker 12 (31:02):
I remember thinking this isn’t it, this isn’t what’s going on.
Speaker 13 (31:07):
She was almost offended that I was questioning his judgment.
Speaker 14 (31:10):
But I knew that something was off.
Speaker 15 (31:11):
And she looked at me like I was crazy.
Speaker 16 (31:14):
It really just makes you feel like your pain and your experiences aren’t legitimate.
Speaker 17 (31:22):
Even today, I have panic when having exams.
Medical gaslighting can happen to all sorts of people in different situations. But I don’t think it’s a coincidence that these stories we’re hearing relate to people with a specific kind of pain, pelvic, vulvar, vaginal. What Lara calls, Vagina Problems. I think those of us with this private pain are more vulnerable to begin with. We don’t have the words to describe what hurts. It’s embarrassing and shameful. And now we’ve heard that gaslighting feeds on power imbalances, so if I go into an appointment already feeling vulnerable about vulvar pain, it makes sense that this is fertile ground for medical gaslighting. We’ve heard many stories by now of people whose pain wasn’t believed. Part of why these conditions are dismissed or not taken seriously is because we just don’t know much about them. Our next few episodes will focus on the major gap in research and understanding of women’s health. We’ll hear how patients have advocated for decades to change this and to understand their own bodies. Here’s a sneak peek.
Jane Pincus (32:56):
You’d find an auditorium of women, I remember this vividly, in front on a table, a woman was lying with her legs spread and the speculum in her vagina and a flashlight and people from the audience would come up and look to see what they could see, to learn.
Thanks for listening. If you want to learn more about Lara’s story, check out the episode page on our website. There you can pre-order her new book, Vagina Problems. This episode was produced by me and Hannah Barg. Our editor is Erisa Apantaku. We also received editorial support from Ellen Mayer, Arianna Skibell, and Judah Kauffman. Thank you to Daniela Tolchinsky, Adina Goldin, Joel Shupack, Heather Guidone, Crystal Dade, Talia Kaplan, Victoria Finlay, Natalie Dibo, Emma Kagan, Melanie Bryan, and Katrin-with-love. We’re also incredibly appreciative of the professionals who gave their time and expertise to this episode. Our episode art this season is designed by Arielle Stein and our logo is from Gaby Escovar. Melissa Guller at Wit & Wire designed our current website, you can check it out at tightlippedpod.com. The music you hear is from Blue Dot Sessions. We’re so grateful to have the support of our sponsors. This season is supported by the Dorot Fellowship Alumni Leadership Award, the National Vulvodynia Association and The Vagina Collective. Thank you so much and we’ll be back soon.
So you must be legal, too. Age 21+ invited to continue.