PCOS

[DD-LDN]

Has anyone found a way of losing weight with PCOS that actually works? Go on holiday in May with my husband and 8 year old and been trying to lose weight pretty much since I had my child but I’ve gained around 2/3 stone since then and nothing seems to shift it no matter what I eat/how much I move or how little I eat! So frustrating and would love to feel more comfortable on holiday too. I’ve been out on metformin for over 2 months but felt like it made me not go to the toilet for around 5 days at a time and the bloating and tummy pain was awful so considering stopping that. Any advice would be great! Willing to try anything at this point! I’m sure I have insulin resistance PCOS if that makes any difference.

I have found the tips from these two super helpful!

 

[ChampagneBox]

scan was all good, no PCO! Thanks everyone for your help

 

[soymilk]

hi everyone, I'm hoping some of you may be able to help me? I have endometriosis, I was diagnosed a few years ago but I suspect I also have PCOS, how were all of you diagnosed? Was it with a blood test, or ecography etc? thank you

coming back to say I also was diagnosed with PCOS this morning - he said my ovaries were full of cysts , he also told me to lose 2 or 3 kg which I know isn't alot but I'm v body conscious and it made me cry. As I'm not ttc he has changed the pill I'm on but warned me that it might be difficult when I do want to start, v emotional morning!

 

[kittypaws]

I know PCOS is so different in everyone and people have different symptoms and severities but one thing I’ve found to be the most important to control is my stress levels (easier said than done I know!) but I find the more effort I put in reducing stress, the easier I find losing weight and getting good sleep etc which then improves my symptoms overall. The mistake I made at first was thinking about all the lifestyle changes I needed to make to improve my PCOS which then made me stressed which just put me back to square one! I’ve still got a long way to go with my weight loss but personally for me it always starts with good mental health. Anyway, sorry for the ramble!

Mental health is one of the hardest things for me just constantly feeling so low and tearful and such severe mood swings! And all the other symptoms don’t help. I never have energy and could easily sleep all day which is so frustrating.

 

[CharlieTYBT]

I've experienced the same issues as others about doctors/endocrinologists pushing for me to lose weight. Granted I'm obese and do need to lose weight and weight loss does help pcos symptoms but it comes across as a stock statement that doctors/nurses say whenever you see them for anything. My mum isn't the largest woman at all but cos she isn't a size 0 she's had the line trotted out to her about losing weight and heaven forbid you smoke too so it comes across as generic advice off a checklist. I actually had some pcos symptoms when I was a healthy weight since my teens but getting bigger made them worse and made it develop in to pcos, I tried telling the endocrinologist this but they didn't seem interested and insisted it was purely due to me getting obese. Whenever I see my endocrinologist I have to say they come across as quite rude and condescending looking me up and down whilst mentioning my weight and it makes me feel awful. I have mh issues quite badly that causes me to eat crap and of course I don't want to be obese and want to lose weight but is really hard to get motivated and stick to dieting and exercise when you have mental health issues.

 

[TravellingPants]

What a relief to find this thread, so many posts here I could have written myself. The thing I find difficult is that so many of the symptoms (for me) are appearance things that women have been taught are shameful, so it’s hard to talk about them with friends who aren’t having their hormones plotting against them. Also blowing my mind to see for the first time a link between PCOS and tubular boobs mentioned!!

I’ve not sought any help for it for a long time but I’m also not interested in having children so I doubt I’d be taken seriously by a GP. It is baffling to me that the focus for treatment is on whether I can bring hypothetical new humans into the world and not the effect that living with this has on me, a human who already exists.

I’ve been following a lot of PCOS accounts on Tiktok and finally ordered some supplements because the excess weight and hair, and a sudden thinning of my head hair this year is driving me towards finally taking control. I am trying to get myself in the mindset of the change to what I eat being an allergy/intolerance and treating it as seriously as that, because ultimately what the hormone levels mean is that my body doesn’t tolerate carbs well without disproportionate weight gain.

 

[ThisIsMyDragName]

Meh, my GP appointment was kind of shit.

Spoiler: My GP appt - trigger warning for fat girl talk and fertility trouble talk

I can be referred to the assisted conception clinic but apparently it’s pointless because my bmi is too high and it will be rejected. And my blood tests I paid for privately were ‘pointless’ and so I have to have more done but they’ll only show us all what we already know, what I’ve known most of my bloody life, I have PCOS. I was simply told to lose weight, like I’ve ever found that easy in my life outside of times of very disordered eating (or the assistance of a hormonal coil which I don’t want because I’m trying to get pregnant). Then, I got a lecture about my medication. I came off my SSRIs last year and my entire world came crashing down around me mental health wise. Looking back, I’ve never been so unwell with my anxiety as I was during the time I had no meds. Some of that was the situation I was in (awful, awful job), but I couldn’t not be on my medication. Instead of going back to my ‘normal’ dose I settled on the compromise of the lowest possible dose that most people just use as a gentle introduction to brain chemistry altering drugs before they increase up to 4 times as much. It holds me, but it’s a compromise.

I asked about my facial hair and acne and was given a vaniqa prescription and told my skin was fine (it’s actually ok today, in fairness), but then followed a massive lecture about how I probably can’t take Vaniqa if I’m pregnant. I felt like this bad person who has already attempted to fuck up a baby that doesn’t even exist by poisoning it with medication and creams and being too fat.

I didn’t expect to walk out with a visit from the stork planned but that was pretty brutal. Trying to think positively, she at least suggested MrDragName books himself in for semen analysis and pointed out it’s not all about the woman, so that was ‘nice’. But I guess it’s all fucking pointless unless I lose weight anyway. Sorry for bringing my TTC chat to the PCOS thread but I cannot face the TTC thread. I had to leave when it felt like everyone got a positive test result even though I’m happy for others, honest guv.

Anyhoo, sorry. I just needed to get that off my chest basically. Tomorrow is another day.

 

[MrsJones83]

I have PCOS but never been offered any treatment.

I’d always suspected to (unpredictable periods, excess hair, acne, belly weight), but I was diagnosed because my ex and I had been trying to get pregnant for a long time with no success. (Turned out he had seriously low sperm count, and I’ve since gone on to have 3 children with my current partner).

The higher my weight, the worse my symptoms are.

 

[slugella]

Has anyone managed to get regular periods? I had 4 last year and haven’t had one for 4 months now. I’m unsure what I’m supposed to be doing, if anything. I was diagnosed last year and then left with no further advice.

Mine are now regular after not having one for over 6 months when I was first diagnosed. I lost about 2 stone and they came back (not saying this is something you need to do as of course I have no idea of your circumstances!). Losing weight and regular exercise did help my symptoms a lot, and I also added a lot more salad and veg into my diet. I have a bit of salad with my tea every evening and try to get a better variety of veg than I was before. I'm not a big fan of fruit so don't each much of that.

 

[RandomAlpaca22]

I always lose this thread! Just thought I'd give an update into my ongoing problems with the GPs not taking my PCOS seriously lmao.

I outright refused a blood test (on mental health grounds as it is too much stress being made to wait in a 2 hour queue, not to mention the phlebotomists are always rude as fuck, the last one made 5 attempts to draw blood and failed each time) as per the NHS website I meet the criteria to be diagnosed with PCOS (symptoms and internal scan of my ovaries which confirmed bilateral PCOS with the right side containing a lot more cysts than the left, sonographer confirmed this was textbook pcos as she sees it all the time in her job). Gynaecologist refused this and blamed all on my weight, was told to stick with a diet and that my symptoms would subside. I put in complaint about her as she was super unhelpful and dismissive of my claims. She was also adamant that my referral form had irregular periods as the reason for the referral but it wasn't (I found the referral and it point blank says for severe period pain).

I left it for a few months as couldn't cope with the lack of help and my mental health got worse so my physical health became less of a priority. After 6 months of no period I spent almost all of October bleeding, in excruciating pain alongside with vomiting, diarrhoea and constipation. Spoke to a GP who told me the only option was the mini pill. I am 16 days into being on this pill and I have never, ever, EVER felt so depressed, suicidal and miserable. I have gained almost 9lbs. The pain I am in everyday has amounted into me taking 7 sick days. GP is supposed to be calling me back at some point to discuss, but what other options can there possibly be for me?

I was put on this pill as due to my BPD I physically cannot cope with having one (it is an extreme trigger for me), when I voiced that the unknowningness of this pill was a huge factor as to why I don't want to take it, I was told to try it and that this is my last option due to my BMI being too high for the normal pills with the 7 day break.

I have tried my best with losing some weight and at first I was slowly losing at the rate of 1-2lbs a week, however now they've put me on this pill that's gone out the window too as my weight just seems to rocket every single time I weigh myself now, regardless of the fact my eating habits haven't changed in the slightest.

I'm honestly at breaking point with this and right now I don't see any possible solution.

 

[Curly]

I buy this one from amazon.
I also have loose leaves that I strain in a tea pot. I love the taste of it although lots of people don’t. Let it slightly cool and I think it’s lovely.

 

[Chocolatelover123]

Thanks, the period issue's been on my mind as I haven't got my appointment with my endo til December otherwise I'd have spoken to them about it and my periods have started since I last spoke to her (I was on the implant and it expired so had it taken out so my periods have started since I last spoke to my endo nurse but have been light and irregular). It gives me hope to hear that women can have children with this condition as when I said to my endo oh great so that means I may not be able to have children she just replied yes

The doctors really don’t have a clue about pcos or how to treat it and often come out with really bad advice, each doctor I’ve spoken to has told me something completely different. I am down the fertility route with my gynaecologist for treatment as we have been trying for a while and he has recommended clomid to help me ovulate which is meant to be very effective. If that doesn’t work there are lots of other options before IVF is even considered. I also know people with pcos who have got pregnant with no help and has come as a shock (as they were told it would be difficult). I know it’s easier said than done but try not to worry there is plenty of help out there if it comes to that

 

[simbi123]

I've recently been diagnosed and told to lose weight. I was planning on trying to exercise more even before this diagnosis, but I prefer not thinking about my diet. Long story but I had a bad relationship with food in my early twenties and since then I eat healthily but didn't beat myself up about an extra slice of toast in the morning or a square of chocolate before bed. It used to take up so much brain space worrying about food and already I feel that happening - feeling guilty and crabby and I don't like it.

I am hoping increased exercise will help and only slight diet shifts (I already eat a lot of veg/ particularly broccoli/ don't drink soda/ eat few processed foods/ make my own bread) but has anyone else experienced something similar? Having a bad relationship with food/ having a good relationship/ now possibly needing to think about food again?

Any advice/ suggestions would be appreciated!

Don't have much advice unfortunately, but wanted to say I have had disordered eating in the past and being told losing weight will help when I already eat very careful and I'm medically a 'healthy weight' was very distressing. Not to say ignore your doctor, but I think its very unhelpful if they tell you to lose weight but don't talk to your about your lifestyle/history first for a better understanding of your situation! Sometimes it feels like they just give you a checklist of things that help 'most' people.

 

[oksobasically]

So glad to have found this thread and to read about so many people's experiences, it's never been something I've talked about with people I know because no-one else is in the same boat. Especially people sharing about their fertility!

I was diagnosed at 19 after about 5 years of struggling - from 14-17 I'd have periods that would be like 4 heavy months on and then 1 week off - my iron levels were going through the floor so I was put onto birth control and iron tablets at about 17 and then had scans and blood tests that confirmed PCOS at 19. This was 11 years ago, but I wasn't prescribed anything, given any guidance, it was just a "well, good luck" and that was it.

As I've got older, the weight gain has been the biggest issue, also meaning that I was moved onto a mini-pill so that I don't have periods at all now. I loved being on Yasmin but the risk was too high for someone at my weight so I couldn't stay on it. It's probably been 8 years since I had a period and at no point has a doctor suggested this might not be a smart move given the PCOS. I think ignorance has been bliss, because when I had periods they were so bad, and the times I've bled in the past few years for cervical biopsies/a loop excision -while not period related - have been traumatic, but it does give me anxiety that maybe they wouldn't come back if I stopped taking cerazette.

It's been so interesting to see other people mention a few things I struggle with but hadn't realised were connected - hyper hidrosis (the absolute worst in my opinion and now with my ADHD meds I've got primary and secondary HH, it makes me feel so gross when it's worst on my face and head), lumpy boobs (only a relief in the context of this being advised when I was getting scans for what felt like a worrying lump at the hospital), mood swings, near impossible to lose weight and regular periods of depression. I'm also lucky to have acne all over my back and some sleep complaints that from googling are connected too

I'm seeing if I can get approval for Saxenda for weight loss (just to be sure it doesn't have any issues given ADHD meds I take) & I'm about 6 months into electrolysis for facial hair which has been better than I could have dreamed for my dark chin hairs. The more I'm reading into this now the more I feel like I should be getting to a specialist for some personalised advice asap.
Sometimes it gets me really down that I didn't have any support after my diagnosis and just thought my whole body and mind were working against me, rather than so many parts of my health being interconnected. So grateful to read so many positive posts about how people are managing their symptoms

 

[Luce0331]

Anyone really struggle with weight loss? Has your doctor been able to provide any advice/support?
feel like I’m doing all the right things but not seeing results

 

[Thank(space)you]

Meh, my GP appointment was kind of shit.

Spoiler: My GP appt - trigger warning for fat girl talk and fertility trouble talk

I can be referred to the assisted conception clinic but apparently it’s pointless because my bmi is too high and it will be rejected. And my blood tests I paid for privately were ‘pointless’ and so I have to have more done but they’ll only show us all what we already know, what I’ve known most of my bloody life, I have PCOS. I was simply told to lose weight, like I’ve ever found that easy in my life outside of times of very disordered eating (or the assistance of a hormonal coil which I don’t want because I’m trying to get pregnant). Then, I got a lecture about my medication. I came off my SSRIs last year and my entire world came crashing down around me mental health wise. Looking back, I’ve never been so unwell with my anxiety as I was during the time I had no meds. Some of that was the situation I was in (awful, awful job), but I couldn’t not be on my medication. Instead of going back to my ‘normal’ dose I settled on the compromise of the lowest possible dose that most people just use as a gentle introduction to brain chemistry altering drugs before they increase up to 4 times as much. It holds me, but it’s a compromise.

I asked about my facial hair and acne and was given a vaniqa prescription and told my skin was fine (it’s actually ok today, in fairness), but then followed a massive lecture about how I probably can’t take Vaniqa if I’m pregnant. I felt like this bad person who has already attempted to fuck up a baby that doesn’t even exist by poisoning it with medication and creams and being too fat.

I didn’t expect to walk out with a visit from the stork planned but that was pretty brutal. Trying to think positively, she at least suggested MrDragName books himself in for semen analysis and pointed out it’s not all about the woman, so that was ‘nice’. But I guess it’s all fucking pointless unless I lose weight anyway. Sorry for bringing my TTC chat to the PCOS thread but I cannot face the TTC thread. I had to leave when it felt like everyone got a positive test result even though I’m happy for others, honest guv.

Anyhoo, sorry. I just needed to get that off my chest basically. Tomorrow is another day.

It is really shit how so many doctors dismiss things with "just lose weight" if it was that easy, there would never be any overweight people in the world

Spoiler: OT: weight talk, Diabetes

My mum was misdiagnosed for years with T2 diabetes, because they couldn't see past her weight. Wasn't until she was hospitalised she was diagnosed as T1

 

[Curly]

Metformin didn’t help me with weight loss but did start to regulate my periods.
My endocrinologist gave me some great advice in regards to diet and supplements and helped explain things better than any GP. I have now had weight loss surgery and hope that it helps me in conceiving. Once I can fully eat normal I will be back on my PCOS friendly diet and supplements and hopefully I won’t need Metformin

 

[Milliehaha123]

Couldn’t see a thread for those of us blessed with PCOS but please do redirect me if there is something!
I’ve recently been told I’ve got PCOS by a gynaecologist after a few years of knowing deep down I probably did. Have had trouble with periods, skin issues and facial hair
I’ve been put on a 3 month course of HRT using progesterone... I wondered if anyone has had any similar experiences and how they found it?

 

[Curly]

Has anyone found a way of losing weight with PCOS that actually works? Go on holiday in May with my husband and 8 year old and been trying to lose weight pretty much since I had my child but I’ve gained around 2/3 stone since then and nothing seems to shift it no matter what I eat/how much I move or how little I eat! So frustrating and would love to feel more comfortable on holiday too. I’ve been out on metformin for over 2 months but felt like it made me not go to the toilet for around 5 days at a time and the bloating and tummy pain was awful so considering stopping that. Any advice would be great! Willing to try anything at this point! I’m sure I have insulin resistance PCOS if that makes any difference.

The only thing that has helped me is low sugar, low carb diet with lots of protein, seeds, veg. Alongside supplements inositol, berberine and alpha lipoic. Alongside Metformin. I didn’t see a difference until I had a total lifestyle change.

 

[Looboo]

coming back to say I also was diagnosed with PCOS this morning - he said my ovaries were full of cysts , he also told me to lose 2 or 3 kg which I know isn't alot but I'm v body conscious and it made me cry. As I'm not ttc he has changed the pill I'm on but warned me that it might be difficult when I do want to start, v emotional morning!

Sorry to hear you’re having a tough time. I’ve just seen the comments that you’re a size 8 so I really don’t see why you should be losing 2 or 3 kg which although isn’t that much weight for a lot of people I would imagine at your size it actually is quite a lot to lose. I’m no Dr but I wouldn’t worry about losing it tbh. And I know it’s cliche but loads of people with PCOS manage to get pregnant either with or without the help of medication so please try not to worry too much (easier said than done I know)