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The Trauma of Medical Gaslighting With Endometriosis

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The first time it happened I was a teenager, and the last time it happened I was in my 50s.

Before I go any further, I need to point out that medical gaslighting can be just as damaging and traumatic as being gaslit by a loved one. The difference here is that when you’re gaslit by a loved one or a family member, they are doing it on purpose. They are undermining you, making you think that you’re going insane. There is spite and cruelness behind this type of gaslighting and when you’re the recipient, I can only imagine how horrid it can be.

With medical gaslighting, the medical professionals aren’t necessarily being malicious. They’re just being thick. They think that they know best. They think that you’re making mountains out of molehills and that at best you’re being a hypochondriac.

And as much as I have traumatic memories of various doctors dismissing my pain and my symptoms, I also have memories of my parents doing the same. I therefore had it coming at me from all directions, and in the end I didn’t know who to trust.

I was diagnosed with endometriosis as a 24-year-old. But my pain started as soon as my periods did. I remember being at school surrounded by girls who, by my standards, breezed through their periods. They were as regular as clockwork and used to laugh about “coming on” once a month.

Was this when I started to think that there was something wrong with me? Was this when medical professionals started to dismiss my pain? I can’t honestly remember — but I must have gone to see my physician several times in the 12 years between my periods starting and my diagnosis of endometriosis. I must have gone to see them when I continually bled after sex. I must have gone to see them when I flooded. But I don’t remember any of them suggesting that something was not quite right.

I remember, as a 16-year-old, crawling on my hands and knees to wake my dad and step-mum in the middle of the night, because the pain was so bad and being told to pull myself together and to go back to bed. They didn’t question the fact that I had woken them up — nor did they stop to wonder why.

I remember my stepmother questioning whether I was using my sanitary products correctly, as she’d noticed that I was getting through them like candy. What did she think that I was doing with them? Eating them? And how does one use a sanitary product incorrectly?

My parents didn’t rush me off to see the physician demanding that they figure out why my periods were so heavy or painful. It was “just the curse” and I needed to suck it up.

And when I did start having sex, no one stopped to question whether it was normal to bleed every single time. I don’t know whether I was too embarrassed to see my physician or whether I did see someone and was just dismissed. I honestly can’t remember.

But I do remember going to see my physician as a 19-year-old and being referred to a gynecologist at a renowned London hospital. I remember him examining me and telling me that I needed to relax. I remember having my legs in stirrups and having his face up close and personal to my privates, telling me that I was being silly and to “just relax” during the internal examination.  This was the first time that I had ever been to see a gynecologist, let alone been examined in such a way. There was no dignity, just pure embarrassment and utter, utter shame.

I remember the way he talked to me. I remember the way he told me that I was being childish because it hurt so much. And I remember that he called me frigid. He basically implied that the reason why sex was painful was because I wasn’t able to relax.  He told me that I just needed to go home and crack open a bottle of wine and that all would be well.

And that, was pretty much that.

As I sit here and write this I can feel the anger boiling up inside of me. I can still picture the 19-year-old me, coming away from the appointment feeling shell-shocked. I remember shaking and wondering what the actual fuck. How had this man in authority made me feel so small and insignificant?

But he was the consultant and I was the patient — so he must know best. There’s no way that he’d have got it wrong, was there?

And so it went on. The self-doubt, the questioning, the wondering whether I was going “insane” and wondering what I was doing wrong.

I remember missing weeks of college because of the pain and being told that I was depressed. I remember physicians telling me that I just needed to take antidepressants and all would be well. Again, none of them questioned my pain or took me seriously.

I think by this point I felt like giving up on the medical profession all together. Here I was, aged 22 not knowing where my life was going or what I was going to do with myself. My periods were so out of whack and so painful, I thought that I was going mad.

By the time I was 23, I was living in Oxford. I remember being at work and the pain being so intense that I ended up making an emergency appointment with my physician. I remember being rushed to hospital with a suspected ectopic pregnancy and phoning my parents to tell them that I wouldn’t be coming home that weekend. I remember my Dad asking me whether I was making it all up and did I really need to go to hospital? Maybe I was just depressed/ stressed? Maybe it was just tummy ache — like I used to get as a child?

But it was none of those. It was an ovarian cyst and it was the beginning of a life of hell. It was the beginning of doctors not listening to me, to my family dismissing my pain, and to my life spiraling out of control.

Prior to my endometriosis diagnosis a year later, I remember being at home for Christmas. I remember being in so much pain that I, again, woke my parents up begging them to phone the doctor. I remember my brother and grandmother being so worried about my throwing up and sobbing, that eventually my grandmother phoned the physician. I remember him coming out on Boxing Day and diagnosing me with a bad case of IBS. I remember my dad being livid with me for bothering the poor man on Boxing Day just because I had constipation. And so it went on.

I remember being diagnosed with endometriosis and everyone expecting me to be better, now that I had had the surgery. I remember the nurses telling me that I could go home and that the pain would be so much better now that the surgeon had removed the nodules. I remember being told that my periods would go back to being normal and that the hormones they’d put me on would dampen things down for a while and that life would be hunky dory.

But it wasn’t. The pain didn’t go. My periods didn’t improve and life became miserable. I tried my best. I went to work every day and pushed myself to the limit. I used to lie down during my lunch hour, just so that I could get through the day and no one seemed to be listening.

I had a physician who implied to my parents that the pain was in my head and that all I needed was some counseling. He was so convincing of this fact that they stopped listening all together, in spite of my consultant telling them otherwise.

I had a consultant who told me that I just needed to suck it up and that I needed to learn how to live with the pain because there was nothing physically wrong with me. There was no more endometriosis — there couldn’t be, because there was none there the last time.

I had a consultant tell me that having another laparoscopy would be a waste of time and that he wasn’t going to refer me to the IVF clinic just because sex was painful.

I’ve had physicians threaten to strike me off because of using the out-of-hours service too many times. I’ve had nurses tap their fingers against their heads implying that I was cuckoo. I’ve been told that I need psychiatric help by friends, family, and doctors alike.

I’ve been told that I can’t possibly have endometriosis because I’ve had a hysterectomy. I’ve been told that I need to try this, that, and the other and that I will eventually get better. I’ve been told that I liked being ill because it meant that I could live off people’s sympathy and that if I wanted to get better, I would.

And after a while, I started to believe them. I started to believe that maybe it was all in my head and that maybe I was causing all of this.  I believed that I was useless and selfish. I believed that I was a waste of space and time and that I just needed to be stronger. Maybe if I was stronger the pain would go and I would get my life back.

The paranoia set in and at one point it got so bad that had someone told me that the sky was blue, I wouldn’t have believed them.

Had it not been for my husband and my amazing endo warriors, I have no doubt that I would have taken my own life. The lows were so very low, and it seemed as though no one was listening. My consultant had given up on me, to the point where I ended up flying all the way to America, out of sheer desperation.

Thankfully that trip paid off and endometriosis was found in amongst all of the scar tissue. I had been right, and for a while, I felt vindicated, until the pain started to come back.

And when it came back — so did the paranoia. I was pushed from pillar to post, trying to find a doctor who’d listen; who’d take my pain seriously.

After two cycles of unsuccessful IUI, I made the tough decision of having a hysterectomy. I was just shy of my 40th birthday and hoped with all hope that having this drastic surgery would be the end of all of my pain. But oh, how wrong I was.

The only good thing about my hysterectomy was that the bleeding stopped. There were no more stained sheets, no more emergency rushes to the chemist for sanitary products. But the pain was still there, and if anything, it got worse.

I had my hysterectomy in 2009. I had another diagnostic laparoscopy in 2011 where nothing was found and that was pretty much that.

I was back on the not-so-merry-go-round of physicians and gynecologists telling me that there was nothing wrong with me. Physicians got cross with me when I kept demanding pain relief and consultants got cross with me when I insisted that something was going on and that it wasn’t just nerve pain.

And then I found salvation from a Facebook Group. I found friends who told me that just because I’d had a hysterectomy, it didn’t mean that I couldn’t have endo. I found endo advocates who pushed me to question the system and to demand an answer.

Eight years ago I found someone who did listen. I found a surgeon who took my pain seriously and who operated on me. I found a surgeon who found active endometriosis in my pelvis seven years after I’d had a total abdominal hysterectomy. I found a surgeon who excised the endometriosis and who gave me back my life.

Now that endometriosis has gone, so has my pain. I no longer have to beg to be heard. I no longer have to prove myself. And I no longer have that paranoia hanging over me.

But I do have scars, and those scars run deep. When my headaches kicked off in 2019, after I was put on alendronic acid, I went to see my physician. He informed me that headaches weren’t on the list of side effects and that I just needed learn to relax, as they were probably stress headaches. He suggested that I try some meditation or yoga and merrily sent me on my way. I remember spiraling down the rabbit hole, feeling small and insignificant again. I remember sobbing all the way home, walking down Glastonbury Road, not caring if anyone could see me crying.

I remember sobbing when I got home and my husband telling me that I needed to go back and see someone else. So that’s what I did.  I stopped the tablets and made another appointment with another physician. The headaches stopped within a few days, and the physician that I saw told me that it was a no-brainer. She listened to me and confirmed what I had initially suspected. One of the most common side effects of alendronic acid is headaches. D’uh.

It’s amazing how much damage these people have done to me over the years. It’s also amazing that now I’m better and “cured” my parents will talk to me about endometriosis as though nothing was wrong. They’ll tell me how proud they are of me after I’ve been interviewed on the TV. They’ll tell me that they’ve read articles about the disease and how horrid it must have been for me when I was poorly. It’s as if none of this happened to me and their whole “let’s pretend” is something that someone else did. It’s extraordinary, but also it’s a relief. Instead of being angry with them all of the time, I can now talk to them about my pain.

As for the physicians and the gynecologists who did me so much harm, all I want to do is punch them in the face.

A few of them have had a chance to apologize — after I sent them post-op emails showing just how wrong they were. But the ones who dismissed me as a teenager make me angriest. The gynecologist who threatened to call security on me when I was being examined should have been struck off. And the consultant who called me frigid… I hope he rots in hell.

I am better now. I am stronger, and I survived the gaslighting but oh, those scars…

Originally published: April 12, 2024
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