So fair warning, like normal this is gonna be an essay. I firmly believe I’ve been misdiagnosed with PCOS and I in fact have endometriosis, though the fact I bleed out places I should not bleed every month plus all the other issues. It’s horrific. I’m currently on the list to see the endo specialists but the wait list is close to 9 months and we’re only 3 months in.
So, I made a request for my medical records from all the places I have been before thinking, you know get all the information together this will help. Before I had been sent to the fertility clinic I had been sent to (despite the fact I don’t want kids they sent me there?!) And oh boy they make for interesting reading. Firstly the initial referral letter says I’ve not had periods. I have, they are massively irregular when I’m not on the pill but I do have them. Then it goes on about my weight and my appearance. Great. I know I’m fat thanks for that.
The clinician in the meeting told me my LH:FSH ratio was characteristic of someone in the luteal phase of their cycle and because mine were so irregular they didn’t know where I was in my cycle but that was her best bet. The letters from the clinic say, ultrasound normal, hormones normal, testosterone normal, they note my LH:FSH ratio is 2:1 so the clinician diagnosed me with PCOS despite the fact the LH:FSH ratio has been discredited as a diagnostic marker for PCOS since the 90s.
But the final letter going back to my GP says that I have PCOS and I was to lose weight, despite them telling me in the meeting I didn’t, and I don’t fit a single diagnostic criteria. It literally feels like they’ve gone “we can’t work out what’s wrong, so shes fat” beyond angry doesn’t even cover it. I am shaking with rage.
I just kinda need to get it out there before I spend the next week fizzing about it.
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I'm worried I'll rock the boat here but here goes.
I do get how you feel: I myself am slightly overweight and I have for years been told all kinds of things about myself by doctors, I still am. It's really annoying! I have no idea what my notes say and I'm not sure after reading your response to yours that I want to know mine - I'd probably be just as annoyed.
To iron some stuff out, although it doesn't help how you're feeling:
PCOS can appear as irregular bleeding, acne, blemished skin, extra hair growth, mood swings and weight gain. Initially doctors have to make a face value appearance and they stupidly still use the BMI thing which isn't accurate but it's what they must record. They can now only do tests if they think it's definitely that; bloods first then ultrasound scans. The scans are what I had to determine I didn't have PCOS as the blood results were inconclusive probably for the reason you've said but I didn't ask back then.
The contraceptive pill technically does not produce periods as there's no egg produces so the GP would be correct in stating no menstruation / periods. When not on the pill or on the break between packs it is medically called a breakthrough bleed, it's annoying that they didn't mention that on your records as the frequency of those is useful to know. The pill does have side effects, of weight gain, blemishes, irregular bleeding and mood swings. So they could have noted that down then too including the irregular bleeding when you're not on the pill. They may have not called the ones when you're pill free as periods as you don't have regular ones so they don't know if you've ovulated. Some women have irregular bleeding and no ovulation ever recorded at all so that cannot be called periods.
It's all too common for GPs just to say lose weight and it'll all be okay. I went to see a different GP for my endometriosis as I wasn't getting anywhere with my current one and she was so nice; talked about weight and how the BMI is not accurate, had a feel of excess fat and did waist / thigh / arm measurements and said that my weight is mostly down to muscle. She's the one that I felt really listened and wanted to know about the endo issue. She did say most doctors don't know what to do with it so they suggest hormones without informing us of the side effects then have a go at us because we didn't know.
It can all feel so unfair; I've had diabetes tests and told lose weight, the same for my liver and kidney ultrasounds - which I was so angry about - of course they don't look good from all the painkillers I'm on because no one will listen - I have endo and I felt like the doctors didn't care so I do get it!
Wow a long post!
There's my story if you're interested it may help guide you:
"All this effort does pay off - my story - hope it helps !"
I can understand why they went through that diagnosis pathways but, I’m angry at the fact nothing I was told actually matches what was in my medical records. I was told at the last appointment with them (I only had 2, the initial one and the follow up 3 months later) that everything was normal and I had no indicators of PCOS but, given my appearance they thought I would benefit from being on the pill and that was all that could be done. Which rang alarm bells for me in the first place. Yet the letter from the consultant says my hormones are abnormal. So why lie to me? Why say one thing to my face and then another to the doctor behind my back?
It’s more…everyone seems to say something different every time I talk to them and the doctors say one thing to my then something different in the charts. It’s very frustrating and its compounding this whole insane process of trying to see an actual gynaecologist.
yeah I hate it when they look at your notes and then tell you something different, like they've made up their own mind because you're there rather than actually paying attention to the notes. It's probably a lack of skills in that area, rather than them saying that, they just assume which can be worse health wise for yourself.
I had that with my coccyx pain, doc said because it's not caused by an accident, leave it for a few months and it will heal, I listened, stupidly and then decided it wasn't good enough so went for private physio. It turns out because it's been left so long it's going to take a lot longer to sort out now. Why don't they just say they're not sure what's going on and then get you to see a specialist or another GP??
Maybe try to go along the route of actually telling them; if they can't decide what's going on - it outside their skills so you need a gynaecologist to have a look - refer me to one, otherwise I'll keep coming in. See if that helps x
I'm so sorry you're going through this. Words cannot comprehend the shock and confusion you must be going through.
I had an absolute nightmare with my first gyno as quite similar to you, he didn't have a clue. One point I was told I have cancer. Another point I was told I have pcos and I needed to go on a GI diet. Quite frankly it took them 2 years to realise I also have a rare condition too!
When I was finally transferred to the specialist professors in london I was shocked when they said they've only recorded 3 surgeries when I've had 4. How can you forget to record a surgery?!
The transfer is worth the wait I promise! You will be seen by people who know exactly what they are doing and they will actually care about you as a person! My best advice is to take care of yourself and your mental health. I didn't and have been diagnosed with PTSD from it all.
I wish you the very best! It's a horrible situation to go through but you are not alone x
I was wondering if I had some kind of…issue with doctors now I have an appointment with my new and very good GP on Monday but the thought of going to it gives me panic attacks already. I am shocked at my notes so far though, it’s like reading someone elses charts. No where in any of it is the mention of the extreme pain I have been in (the emergency room and emergency admissions records I got from the hospital today are at least a lot better) and I am just so at a loss for how disorganised and incomplete things are. I was told one thing, notes say another, letter to GP says yet another. It’s…frustrating, the fact is I didn’t even get to see a gyno I got sent to the endocrinology fertility clinic, so I was seen by an endocrinologist. I haven’t even gotten to see a gyno yet.
I want to rip my hair out in frustration, I work in a medical research lab and if my lab book and note books looked like this I would get the sack so I don’t understand how these doctors got away with this.
My new GP is really good and was horrified that with my symptoms etc I'd been treated this way. She is totally a gem but its almost too good to be true if you know what I mean? I'm waiting to go in and she goes "actually, I've decided there’s nothing wrong, you're not to come back" and we go all the way back to square one. Have literal nightmares about it.
I think, people massively underestimate the gaslighting and the dismissal of symptoms in women, its like, they’ve made their mind up within one look of you and nothing you say then gets taken into account.
I've thought for years it was all in my head and to kinda have it on paper right in front of me that I hadn't misunderstood and that it was as chaotic and shambolic as I thought is...both really validating but also infurating.
I remember getting myself referred to gynae 3 years after getting married as I was convinced I had endo and I we spent to of the years trying to get pregnant. I used to be a gynae nurse so I knew the symptoms! I remember the gynae refused to see me as it said trying for a baby. I then saw a fertility dr who spent all 3 appointments saying I was too fat (I had a bmi of 29). One day she wasn’t there and a replacement dr seemed flabbergasted by the delay and referred me for ivf. The ivf dr diagnosed endo stage 4 on a ultrasound scan. I wasted 2 years going through this to only be referred back to gynae. I know she wrote fat in my records as I watched her! I think they think we’re all stupid! Since then I’m paranoid about my weight and feel all drs think I’m too fat for help. Good luck with your journey. Xx
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Poor GP understanding/awareness
Second diagnostic lap tomorrow...anxious as hell
PCOS or ENDO????
Please someone help me, I cant get the doctors to accept that I am still in pain after they apparently "got rid of" my endo..
Shoulder pain during period 
