General medical incompetence – PCOS? Just lose weight, it’ll stop.

Sarah writes:
Trigger warning for talk about self-harming
This isn’t exactly all fat discrimination by doctors but more detailing the incompetence I’ve had to deal with in regards to my PCOS and also my mental health, and incredibly dangerous advice given to me about weight loss by a doctor. Just as a warning, this could be triggering for anybody who struggles with self-harming.

I first started having problems with my periods when I was 14 (I’d started when I was 10). At first my doctors brushed it off as being perfectly normal but I persisted and eventually she sent me for an ultrasound (external one) when I was 15. (She didn’t do any blood work!) It came back as being clear except for a very thick womb lining which was consistent with me not having had a period for 10 months. So I believed her and just accepted that it was a normal thing for a teenage girl to go through, especially as she told me it was to do with being overweight.

Fast-forward to when I was 16. I wanted to go on the pill to manage my periods. This was because I would be going backpacking for 6 weeks when I was 18 and I didn’t want to deal with having one of my very irregular and very heavy periods deciding to make an appearance during that time.

They tried me on a variety of different combined pills, all with awful side effects, until eventually they put me on a mini-pill/progestogen-only pill called Cerazette. It worked. It stopped my periods completely and everything was fine during the time I went backpacking.

A few months after going backpacking I started at university. By that time I felt really strange just not having periods so I decided to come off Cerazette. I had one normal period 2 months after stopping it and then nothing.

During that time I was now going to the GP surgery in the city where I was at uni, rather than my doctors back at home. I usually saw a wonderful doctor. I’d actually mainly been seeing her about dealing with my depression after deciding to stop taking the anti-depressants another doctor at the same surgery had forced me to take (by saying that if I refused to take them I wouldn’t be offered any other help like counselling or therapy) . The no period thing was just a worrying side issue. During my time at uni I had also started smoking, part of that was because I’d heard it was an appetite suppressant (stupid, I know) and I was desperate to lose weight.

Anyway, this lovely doctor ordered for me to have blood work done and it came back with hormonal imbalances. However, this was done right before I was due to go back home for the summer so she told me to take it up with my doctors back home.

Now the fun really started with the NHS. The first doctor I saw, as soon as I mentioned that I had no periods and that I had abdominal cramps asked me if I was sexually active. I said yes (as I had been at uni) and she said that I would have to have a pregnancy test. I told her that it would be impossible for me to be pregnant as I was a lesbian but she still insisted that I had to have a pregnancy test because it was the standard procedure for any teenage girl even if she had lied about being sexually active!

I stormed out of there and demanded to see the practise manager, lodged a complaint and made sure it was noted on my files that I was to never have another appointment with that doctor (there are about 12 different GPs that are based in that surgery. )

I then had weeks of trying to contact my surgery back in my university city to get them to send my blood work over to my doctors at home. Didn’t happen. So the doctors finally did blood work on me and, you’ve probably guess it, still hormonal imbalances but it was a week before I was due to go back to university.

Anyway, went back to uni. Had to have more blood work done because they’d lost the other results and I couldn’t be bothered with trying to deal with getting my notes from my home doctors. Finally, I managed to see the lovely doctor again, who had to order more blood tests. She then explained that she thought I had PCOS and what it was but she wanted to send me for an ultrasound to check. I told her I’d had an ultrasound before and she explained to me that an external ultrasound wouldn’t be able to pick up the very small cysts that can be present with PCOS and I would need an internal one.

That ultrasound was incredibly painful as she pushed it right in and then out to the side. (As a side note, the evening after that ultrasound I got raped. There are only two people in real life who I have told. One of them is the therapist I’ve been seeing for over a year now and I only told her a few weeks ago because I’d convinced myself that nobody would ever believe that a fat girl had got raped. )

So I finally had that ultrasound and it confirmed that I did have polycystic ovaries. By this time was 15 months since my last period, so she kick-started my period using pills. Once the hell of that period was over, I’d finally got relief from the pain I’d been in.

Then she left as she was moving across the country. After 6 years I’d finally got a diagnosis that something was wrong with me.
So I went back to see another doctor about how to manage my PCOS. She told me that my only option was to go onto the combined pill. I explained to her that I had tried 4 different types of combined pill before and told her the side effects I’d suffered and asked if going back on Cerazette would help. All I wanted was to be able to manage my periods so going back on something that stopped my periods completely and that I had no side effects from would have been fine for me.
She told me that there was no way Cerazette could help with PCOS and I would have to go onto the normal pill. She then gave me a lecture that because my BMI was over 35 I was at high risk of getting a blood clot when taking the normal pill and this risk was even worse as I smoked. She told me to go lose 10kg (about 22lb), and quit smoking and go back to see in her 6 weeks time after I’d done both of those things. I asked if it was possible to healthily lose that weight in that time frame. She told me to stop eating all the cheese and cakes I obviously eat (umm.. I’d been vegan for nearly 3 years at this point) and to eat no more than 800 calories a day and that with my fat reserves I would be perfectly fine.

I didn’t argue with her. (Notice how I took action over the doctor who said that all teenage girls had to have pregnancy tests if they had those problems? Well in my mind that was discrimination towards all teenagers and it wasn’t my fault I was that age. However, with this doctor, it was my fat, so it was my fault so I was certain that if I complained everybody would laugh at me and side with her. Besides, I tried so many diets before that had never worked so maybe one that a doctor told me to do would actually work? )

Now, remember above I said I suffer from depression? Well, that includes self-harming and suicide attempts. By this time I’d started to use my smoking instead of self-harming as I really didn’t want to cut anymore but I needed to do something. So it was my crutch. One that wasn’t very healthy but would be better for me than cutting and I could get a lot of support with helping to quit smoking when I felt ready do that rather than dealing with the social stigmatisation I got from my self-harming and the risk of when I have a really bad bout of self-harming I have been very close to killing myself even if it wasn’t actually a suicide attempt.

So, there I was trying to quit smoking and lose 10kg by nearly starving myself at the same time. Yeah, my depression (which had been getting better) spiralled down and I nearly hospitalised myself with the self-harming. Actually, I probably would have died if my friends hadn’t found me before I’d done enough damage.

So, as you can guess, I failed at both quitting smoking and the diet. (Once my friends had got me cleaned up and bandaged they shoved a bar of my favourite chocolate in my face and light up a cigarette for me while putting my favourite film on the TV before they started to cook a meal for me. It was bloody wonderful. )
I went back to the doctors. After listening to her berate me for just not trying hard enough I finally plucked up the courage for her to see my arms and the healing cuts. Her response? “So? That’s not an excuse for being obese and refusing to quit smoking.”
I then tried to calmly explain to her that I smoked as my crutch instead of cutting myself and that when I try to quit my self-harming can get so bad I can nearly end up killing myself. All the while I was terrified that she was going to section me and have me carted off to the mental health hospital (which is actually why my friends took care of me themselves instead of getting anybody else involved – the thing I am most terrified of is being sectioned).
She laughed at me. She then told me “Cutting would be much healthier for you than smoking. Plus, if you quit smoking you will be able to exercise more so you will lose weight and you won’t have any reason for being sad anymore. “

Yep, that’s right. Nearly killing myself outright is healthier for me than smoking. Oh and the only reason I have depression is because I’m obese. Even though it’s right on the bloody notes in front of her that I’ve had depression (and anxiety) since I was 10 years old and that my weight gain (which started when I was 13) was due to comfort eating thanks to the stuff that happened in my childhood! Oh and also a broken ankle when I was 13 which never fully healed (I’ve also been lectured that was because of my weight, although when I finally managed to get it x-rayed again 7 years after I broke it, they discovered they’d missed the fact the bone had chipped and I had a lovely bone chip floating around in there which was causing me all the pain. ) which meant I was unable to do any of my favourite activities (horse-riding, mountain hiking etc) anymore.

Anyway, I dropped out of uni a few months after that to my depression and the pain that I was in from the PCOS meant I was having trouble just functioning. Oh and also because I had days when I couldn’t get up out of bed because my hips are screwed up thanks to my ankle and I get severe shooting pains radiating from my hips, so painful that I can’t even breathe, let alone move.

I’ve had two more years of hell with my doctors back at home. Although they understand the reason for me smoking and don’t want me to quit until I’m ready to quit. They are also starting to accept the fact that I do eat healthily (I keep a food diary now – I eat vegan diet with minimal processed foods (I have an occasional bit of dark chocolate, cakes/scones I bake very rarely and I have mock meat things once or twice a year) and have done for 5 years) and that I get way more than the 30 minutes of exercise 3 days a week they usually recommend to people of my size for weight loss. I did take a lot of joy out of showing them a copy of my job contract which details what I have to do at work and explaining to them that on average I walk over 12 miles a day at work, and on days I’m not at work I go out on at least 5 miles long walks with my own dogs. So they are finally starting to accept that my grand total of 2kg (4lbs) weight loss in the year since I’ve started my job might actually be to do with the fact my PCOS means my body wants to cling onto every single fat cell and not because I’m a lazy fat person who sits around stuffing her face with junk food all day.

Anyway, I am finally back on Cerazette and it’s wonderful. I’m also finding that my job, and being a lot more active than I was at uni, is helping my hip problems a lot. In fact, I can’t sit down in a chair for more than an hour without my hips playing up when I try to stand back up. So with my hip problems it wasn’t my weight that was causing them/making them worse, it was just having to be a university student and spending hours sitting in lectures or in the library doing my work, that was causing me all the hip problems.

Oh and despite being obese and a smoker, I manage to do my job and keep up with (and most of the time out-walk) the “healthy weight” people at work.

And best of all? Apart from a little shallow blip on Christmas Day, I haven’t cut since 6th October 2011, and without thinking about it, just doing it naturally, I’m down to 1-3 cigarettes a day instead of over 20 a day. It’s all down to my wonderful therapist who worked out that I actually have an avoidant personality disorder as well as my depression/anxiety and she also doesn’t mention my weight at all, unless I bring it up. And even then all she does is ask me if my weight stops me from doing anything that I want to do, and I realise that it doesn’t.

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11 Comments

  1. LadyTL

     /  March 6, 2013

    Congrats on finding professionals who decided to actually practice proper medicine with you! To be honest the rampant attitudes you encountered is part of why I have been avoiding doctors for years since I don’t have much choice in who I see at all. I too have hybrid issues with my health, most of which have nothing to do with my size and weight. It’s criminal though the way so many doctors decide fat people don’t need real medicine no matter what the issue might be.

    Here’s hoping you are able to stay for a long time with the better doctors you have now.

    Reply
  2. Cutting is healthier than smoking?
    Facepalm. Headdesk until cranium bleeds.
    At any rate, cutting won’t cause lung cancer, I suppose…
    Jeezus Jones.
    Do they graduate just anybody from med school?
    I too have a history of self-injury. I feel you on this. Your horrifying periods make mine seem like a walk in the park. I have hypothyroidism and my periods have always been heavy, and when I was younger the cramps were pure screaming agony.
    I also got sexually assaulted while I was in college. When I told my father, he basically said that it was my fault for putting myself in harm’s way. I told him to never bring it up again or I’d say he was a liar.

    Reply
  3. I often wonder how do some people even manage to get into medical profession…

    Reply
  4. Have you tried chiropractic care for the hip issues? Or an osteopath? Sometimes physical manipulations can do wonders, along with some soft tissues/massage work to help support the manipulations and loosen the muscles/fascia.

    Just a thought.

    Reply
  5. Elizabeth

     /  March 9, 2013

    Let’s be clear, anyone can get into the medical profession, and it seems to attract the emotionally dysfunctional. My husband is an RN and today he told me the story of the doctor who gives drug addicts all the meds they want in order to “help” them. You don’t have to be intelligent — critical, questioning, investigative — to be a doctor, you just have to memorize and repeat. I had already figured that doctors know little except what the last drug salesman told them, but I still got angry when an academic — an endocrinologist who teaches medicine — repeated drug company propaganda verbatim. What can we do with these people we have given so much power to, who know so little? Challenge them (as above), question them, criticize them to their faces.

    Reply
    • vesta44

       /  March 10, 2013

      Elizabeth – While I agree that there are some emotionally dysfunctional doctors, not all of them are. And not just anyone can get into the medical profession. It’s not just a matter of memorization and repeating it back, there’s also the fact that internships aren’t easy and require a willingness to work one’s ass off while getting little to no sleep for days on end. Not something everyone is willing to do. Doctors are only as good as the education they get and the teachers they have. Most of those teachers are hidebound, died-in-the-wool, doctor-as-God pedagogues who steadfastly ignore anything that doesn’t agree with what they were taught, thus perpetuating their ilk. It takes a strong person, with an open mind, to be able to take those kinds of teaching with a grain of salt and be willing to admit that they need to keep on learning even after they’ve graduated and become full-fledged doctors. Tarring them all with the same brush does a disservice to the good ones out there – and there are good doctors out there.

      Reply
    • origami isopod

       /  April 17, 2013

      “and today he told me the story of the doctor who gives drug addicts all the meds they want in order to ‘help’ them.”

      Color me skeptical, given how goddamn hard it is in the U.S. to get doctors to treat chronic pain seriously (because, ya know, suffering is precious unto JEEEZZUSSSS) and how anyone trying to get adequate treatment is labeled as a “drug seeker.”

      Reply
  6. Elizabeth

     /  March 11, 2013

    vesta, I really respect you and I understand what you are saying. Of course there are superb doctors out there — Dr Robert Cathcart, who worked with AIDS patients; Dr Levy, the cardiologist; Dr Fred Klenner, who saved many lives; etc — but they are so far and few between. I have never had a superb practitioner, or even a very good one. “Decent” doctors are good at their narrow field, but generally unthinking, unquestioning, uncritical. (The husband of the academic I mentioned said that they are changing the way interns and residents are treated, which is a good thing.)

    What I realized is that there is little interest in actual health. There’s a very good video with a former pharma saleswoman who wants people to understand this. I was glaringly hypothyroid for decades, and yet no one noticed! (And there are millions of other people with my same story, which really depresses me.) Consequently, I had a kidney infection for two years, lost muscle that supported my injured spine, and damaged my back. I got pelvic inflammatory disease, nearly died, and lost my uterus, ovaries, and cervix. By the time a nurse practitioner/naturopath diagnosed me, I could no longer read, had a thyroid gland which had been swollen for years, on and on. My body temp as I was being wheeled into my last surgery was 95; no one even blinked. I’m sorry, but I attribute this to stupidity, to no curiosity (curiosity being a component of intelligence), to dysfunction. My sister is an MD, and you couldn’t meet a more emotionally dysfunctional person. It’s actually my husband who made this observation; he finds the functioning of the doctors he has to work with simply unbelievable.

    Reply
  7. Hello, your blog is really informative and has helped me with a lot of information as I am a PCOS sufferer too. I have a blog http://learningtolivewithpcos.wordpress.com, I would be really grateful if you could have a look and comment as Im just starting out and new to blogging :) thanks

    Reply
  8. I have PCOS too, and was just formally diagnosed with it about 4 years ago, despite having had years and years of fatigue, irregular periods, and an inability to lose weight no matter what I did. I had gotten the whole fat-shaming thing from quite a few doctors over the years, and sometimes still do, until I tell them my history and they shut up. I have struggled with mental illness for the majority of my life, a lot of it due to bullying by my peers, relentlessly, for about 13 years (all of grade school) and emotional abuse at home. I didn’t know why I had always been so heavy. All I knew was that I was sick and tired of being judged by classmates, teachers, doctors, coaches, etc. by my size, despite my performance. I took matters into my own hands and developed an eating disorder at the age of 22, which I had for about 9 years and am now gratefully in recovery without any behaviors in 2 years as of last month.

    I had the eating disorder for about 4 years before anyone really took it seriously (I was on the verge of flunking out of grad school due to the combination of this and an extremely painful ruptured cyst and thus ended up withdrawing from school), and even when I went to a partial hospitalization program yet still couldn’t quit purging, they merely decided to move me to the “recovery residence” (basically an on-site halfway house), which was founded for people with substance abuse issues, rather than people with eating disorders. Of course, I still kept purging there, yet they never once referred me for residential treatment, despite the girls who were at a low weight being referred. I guess they thought that since I was fat, it wasn’t as dangerous for me to puke my guts out several times a day. Because of not getting the appropriate level of care for about 6 years, my eating disorder lasted the greater part of a decade and I was repeatedly hospitalized for medical complications as well as further stints in treatment at a more appropriate level. I think that if the first place had looked past my weight to see what my behaviors were like, they would have realized I needed a higher level of care, and I wouldn’t have had to struggle so long. I also probably wouldn’t have a lifelong tendency toward low potassium, and chronic GERD.

    Reply
  9. Hi Sarah,

    The shooting pain in your hips & pain upon standing after prolonged sitting sound like they may be the result of femoroacetabular impingement (FAI). If your hips are still bothering you, I suggest scheduling an appt with an orthopaedic surgeon, preferably a hip specialist, to get checked out. They will likely take radiographs to determine if & where any impingement is occurring. Here’s a good article on FAI for your reference:

    http://www.methodistorthopedics.com/femoroacetabular-impingement-fai

    Reply

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