How my hellish endometriosis experience has made me a better doctor

Dr Sarah Tedjasukmana

writer

Dr Sarah Tedjasukmana

General Practitioner; Co-Director, Sydney Perinatal Doctors

 

“I just need a medical certificate,” she tells me.

It’s her period pain, she explains. She just couldn’t go to work today. She’s taken Panadol and Nurofen, but it’s not cutting it, so she’ll spend the day in bed with a hot water bottle. “So just a quick one, today.”

Inevitably for me, no, this is not just a quick one.

“How often is your period pain bad enough to need time off work?” I’m typing up the medical certificate as I ask her this. Printing it, signing it, and sliding it across to her. Of course I’ll give her the medical certificate, and I don’t want her to feel like it depends on her answers to my questions. I don’t want her to feel like I’m interrogating her, like I’m doubting if it really hurts that much.

You can see her brain working, trying to calculate an answer to my question. “I mean, well not every month. Usually I just push through, but I vomited this morning and it was hard to walk.”

Somewhere around here I say, “You know that’s not normal, right?” It’s awful how often the answer to that question is “Isn’t it?”

For some, every woman in their family has this experience, so of course they assume it’s normal. For others, the all-too-often taboo topic of menstruation is just not something they’ve delved into deeply enough.

One patient in particular looked at me and said “No one has ever asked me this before.” A quick look in her file showed she presented monthly, like clockwork, for a day or two off.

Why do I ask if she knows it’s not normal? Because there was a time when I didn’t either. I’ve been on the other side of this consult more times than I care to remember. My own experiences with endometriosis and the healthcare system have unfortunately been more negative than positive.

But, at the age of 36, as I look down the barrel of my impending hysterectomy, I can see a silver lining to my own personal experiences. I’ve learnt a lot about how to treat patients, and perhaps more importantly, how not to treat them.

I was 16 when my mum found me curled up on the couch in tears. She was instantly worried. Her daughter was not the crying type, not the type to complain. Periods had just been worsening over time, and I hadn’t mentioned it to her. I assumed it was normal. I didn’t see the point in complaining. I used paracetamol and ibuprofen for a while but when they stopped working I just stopped using anything. Mum felt awful that she’d never noticed, but she was a lucky one with light periods that weren’t painful, so it hadn’t even crossed her mind I might be having trouble.

She whisked me off to her GP. I told my story of increasingly heavy periods with awful cramping, feeling as though someone was trying to rip my uterus out through my vagina. And this is where my healthcare experiences started to go wrong. The GP looked me up and down and said “Get on the scales.”

I was told that day, as a 16-year-old with regular periods, with no blood tests or ultrasound, that I had polycystic ovarian syndrome (PCOS) and needed to see an endocrinologist for weight loss advice. It would be years before I learnt that PCOS doesn’t cause pelvic pain. It would be years before I sat in med school and learnt the Rotterdam criteria, and realised that you cannot diagnose someone with PCOS purely by noticing that they are fat.

I took the referral and went to meet the endocrinologist. I’ve never inhabited a small body – at this point in high school I was a size 16-18. The endocrinologist said I was obese, and lazy. I used to work with horses – I spent 10+ hours every Saturday outdoors doing physical work, mucking out, training dressage horses. I was on the volleyball team. Apparently that wasn’t enough. She told me it was obvious I ate too much and moved too little. “Definitely PCOS,” she said, “Lose 10-15 kilograms and you’ll change your life.” She started me on an incredibly strict very low calorie diet, my first real diet, and unbeknownst to me at the time, the very slippery slope into eating disorder territory. “You don’t need to eat,” she said. The strict low-calorie regimen I was given was to be the absolute maximum I was allowed. It was truly awful, but I did it.

I returned to her 20 kg lighter with one question – when was I going to notice a decrease in my period pain? If anything, it had worsened. Her face fell. “Oh, I was hoping it would just be PCOS and not endometriosis, but if it’s still bad then it’s endo, you’ll need to see a gynaecologist.”

I had never heard of endometriosis at that point. It had never been mentioned by the GP. It had never been mentioned by the endocrinologist. But I wanted answers and help, so off I went for another specialist appointment.

The gynaecologist took me in alone. She barely looked at me as she read the referral letter. “And how long have you been sexually active?” she asked. I hadn’t, and I said so. “Ok, ok, so you’re not currently active, but when did you first have sex?” she tried a different question. I was getting flustered by this point. It was obvious she didn’t believe me, and I was confused. Why didn’t she believe me? And regardless, what did this have to do with my period pain?

As I answered in the negative again, she slammed the referral letter on the desk, looked me straight in the eye and exclaimed, “Oh for God’s sake, girl, your mother isn’t in the room! Just tell me the truth!” I left that appointment early, and in tears.

Back to the endocrinologist we went. Given that I hadn’t “liked” her gynaecologist, she suggested starting the pill. I took it for three months, suffering low mood and painful breasts, with no decrease in period pain and only a mild decrease in flow. Much to her chagrin, I gained 15 kg in this time. It was my fault, obviously, I mustn’t have been sticking to her diet. No, it couldn’t possibly have been the pill. But, if it hadn’t worked, I’d have to see another gynaecologist.

The second gynaecologist seemed nice enough. She certainly listened. Definitely sounded like endometriosis to her, and she recommended a diagnostic laparoscopy. She explained she could cut the endometriosis out while she was in there, and recommended the placement of a Mirena intrauterine device (IUD) whilst under anaesthetic to prevent the endometriosis growing back. It was going to be wonderful, she said, I’d have no period.

Surgery went as well as it could, to the best of my knowledge. The diagnosis was confirmed, and she said she cut a lot out. Post-operatively, I had significant pain, but the nurse in hospital said no one needed more than paracetamol following a laparoscopy and called me a drug-seeker for asking if there was anything stronger. I was meant to stay in hospital for two nights but self-discharged after one.

At my four week review I tentatively asked the gynae when the bleeding was going to stop. She’d told me no periods, but I was bleeding, daily, and in pain still. Not just incision pain, crampy pelvic pain. It was only now, after the IUD was placed, that she explained it can take a while for the body and the IUD to adjust to each other. A lot of people bleed at the start, apparently, and it will settle down soon.

At my three-month review, I asked if there was something wrong with me. I was still bleeding. I was still in pain. Every day. This was actually worse than before. She seemed frustrated with me for questioning it. It takes time to settle. I went back six weeks later, with the same complaints, to be met with the same answers.

At my six-month review I walked into the room and burst into tears. I had seriously contemplated trying to remove the IUD myself but wasn’t sure if that would be safe. I was still bleeding daily. I was still in pain. She looked at me and huffed. “Fine, I’ll take it out.”

I’ll never forget that old-fashioned giant metal speculum.

Over the next few years I bounced between GPs trying to find someone or something that could help. I was prescribed Panadeine forte and tramadol, but they did nothing, and doctors looked at me strangely when I told them that (years later I’d discover I have the CYP 2D6 variant that means I don’t metabolise them properly). I was even told to trial diazepam for its muscle relaxant properties, but experienced a paradoxical reaction and was up all night hallucinating.

Eventually, I saw a new GP for a medical certificate. He asked if my period pain had been investigated, and when I told him my story he said, “well, we’ll have to keep trying.” By this stage, the only medication that would take the edge off pain was oxycodone, but I would only use it on the worst day or two of the month as I was terrified of becoming dependent.

A hospital across town had a dedicated pelvic pain clinic, and he recommended seeing them. I’d only ever seen female gynaecologists, but at the public clinic I got a male registrar. He took my history, and then informed me that he would need to perform an intimate examination. I was alone, I was terrified, I had still not been sexually active, and I started crying. Looking back, I think it was even worse for him than it was for me. He just stood there, awkwardly, for minutes, entirely unsure how to handle me. Eventually he mumbled “I’ll go and get my boss” and walked out.

What felt like an eternity later, he returned with a soft-spoken consultant gynaecologist, who along with my new GP, was one of the best doctors I’d yet come across. He sent his registrar off, and sat down with me. He took me through the history again and for the first time in a long time, I knew I was being heard and believed. He did examine me, but with a thorough explanation of what he needed to do and why.

I went on to see him privately, and we’ve tried multiple things over the years. I’ve had two further laparoscopies with him, different hormonal and non-hormonal medications, and even spent a few months in a medically-induced temporary menopause. (The hot flushes weren’t awesome, but the lack of pain and bleeding was an incredible holiday.) Unfortunately for me, an effective treatment has not been forthcoming.

After my last laparoscopy, he suggested I not put off having children any longer. I’d always known there would be a chance of subfertility from endometriosis, and he felt that post-surgery was my best chance of falling pregnant. Luckily for us, we were successful.

Six years of two pregnancies and lactation gave me a relative reprieve from endometriosis. In my first pregnancy, I continued to have monthly pain with sharp stabbing pain for a few days. The scattered periods I had between the first and second pregnancy were as bad as ever.

When my cycle returned after weaning my second baby, it was somehow even worse than I remembered. Even now, I questioned myself first: was the pain really worse? Or had I just become deconditioned because I wasn’t used to it anymore? But now the bleeding was even heavier, truly debilitating, requiring a mixture of hormonal and non-hormonal medications to allow me to leave the house. A new ultrasound shows I’ve now developed adenomyosis as well, just to add insult to injury.

And that’s how I find myself here, aged only 36, but about to have my uterus removed. I’ve had my family, and I’m grateful for them, but I’ve really run out of options and I don’t need this uterus anymore. I can’t say I’m looking forward to major surgery, but I’ll be glad to see the back of it.

Aside from my two beautiful children, it’s hard to see any positives from my experience as a uterus-owner, except this: I know it has made me a better doctor. I’ve had some truly awful patient experiences. I’ve been accused of lying and drug-seeking. I’ve been patronised and told I had to put up with bad side effects from medications and other treatments because the doctors knew better. I’ve been discriminated against for living in a larger body, accused of being lazy, and made to believe that it must be my own fault that I have pain and heavy bleeding every month.

Endometriosis remains a tricky disease – with many women waiting years for an accurate diagnosis, aetiology still poorly understood, and treatment options still pretty hit and miss. As GPs, we are in a privileged position to make a real difference here. Take that extra moment to ask a few questions as you hand out the medical certificate. Send them to the gynaecologist. Earlier diagnosis increases chance of treatments work, decreases risk of infertility and decreases risk of developing chronic pelvic pain. But above all, listen to your patients. Really try to hear what they are saying, and what they are not saying. Feeling heard can make all the difference.

Take Home Messages

  • Period pain that doesn’t respond well to simple analgesia and/or necessitates time off work is not normal.
  • PCOS does not cause pain.
  • Patients can look “well” and be in a lot of pain at the same time.
  • Look past the patient’s body size – weight is often not the culprit.
  • We’re often taught in med school to have a degree of cynicism. “Patients lie.” But patients also tell the truth. It really helps the therapeutic relationship if our default position is to believe the patient when they say they’re in pain.
  • Icon 2

    NEXT LIVE Webcast

    :
    Days
    :
    Hours
    :
    Minutes
    Seconds
    Dr Shannon Thomas

    Dr Shannon Thomas

    TIAs and Carotid Stenosis

    Dr Ginni Mansberg

    Dr Ginni Mansberg

    HSDD - What is it & How is it Managed?

    Dr Rupert Hinds

    Dr Rupert Hinds

    Functional Gastrointestinal Disorders in Infants – Practical Advice for HCPs

    A/Prof Michael Woodward AM

    A/Prof Michael Woodward AM

    Using the New RSV Vaccine in Practice

    Join us for the next free webcast for GPs and healthcare professionals

    High quality lectures delivered by leading independent experts

    Share this

    Share this

    Dr Sarah Tedjasukmana

    writer

    Dr Sarah Tedjasukmana

    General Practitioner; Co-Director, Sydney Perinatal Doctors

    Recent Posts

    Latest GP poll

    We asked GPs "To what extent do you support or oppose legislation to allow nurse practitioners and endorsed midwives to prescribe PBS medicines and provide Medicare services without an arrangement with a doctor?"

    Strongly support

    0%

    Somewhat support

    0%

    Neither support nor oppose

    0%

    Somewhat oppose

    0%

    Strongly oppose

    0%

    Recent podcasts

    Listen to expert interviews.
    Click to open in a new tab

    You have completed the Educational Activities component of this resource. 

    Select ‘Confirm & claim CPD‘ to confirm you have engaged with this resource in its entirety and claim your CPD.

    You will be taken to explore further CPD learning available to you.