PCOS

[prinnygrace]

I have suspected PCOS, never diagnosed through my own fear of facing reality. I hadn’t had a period in 10 years (since I was 14, now 24). I randomly got one last night and cried tears of joy just knowing my body is capable of doing what it’s meant to do is huge for me! I’m desperate to have children one day so to just be able to have a period is huge for me. I’ll be on egg shells next month waiting to see if I get another one. Praying this is the start of some regularity for me🥹 thennnn I will actually face going to the doctors and get tested.

 

[RandomAlpaca22]

I was diagnosed nearly 20 years ago. I’ve seen countless GPs, all they say is lose weight. I was on metformin, then one GP took me off it due to apparently no evidence of it helping with women with PCOS, now every GP I see refuses to put me on it again.
Under the NHS PCOS is treated as a fertility issue. I do not want children. Therefore no help is provided.
I have had to educate myself.

This is currently my issue too. I have been borderlined PCOS since the age of 11 but the GP decided at 15 the best thing for me was to be put onto the pill, causing the cysts to not show on any further scans.

I'm now almost 27, and have just had a trans-vaginal scan that has confirmed my ovaries are absolutely ridden with cysts. All my GP has offered is for me to go back on the pill (I don't care nor wish to go back on it).

I'm fucking sick of this NHS and their lack of care and support for women with PCOS/endo etc. We're pushed to the bottom of the barrel, only given a look in if we inform them we are TTC. I don't want kids right now. but I would sure as hell like to not to be having cycle issues for 2 weeks every damn month

 

[Tanne1999]

Been TTC now for a few months. Not had a period since coming off of the patch - which I expected really, but it’s still disheartening.

Decided to try myo-inositol. Been on it for about two weeks, not sure if it’s a coincidence or not, but I’ve just had a positive ovulation test and I’ve lost a bit of weight, (not sure how much as I don’t weigh due to previously having an ED).

I don’t think this will be the month I get pregnant, but it’s definitely making me feel more optimistic about the future

 

[Elsie1988]

I was diagnosed with PCOS at 16 (I am now 34) just had my second baby. Spent years on the pill, overweight, facial hair (shave daily) sweaty, low moods etc etc all the symptoms I have. I comfort eat and addicted to sugary foods so I thought I had no hope. Because of my hair colour laser hair treatment doesn’t work either.

I started taking metformin and after a month I had regular and monthly periods and 6 months later I found I was expecting my first baby.
After two years he was born, I went back on metformin, walked daily and lost 20kg and felt happier than ever. I also changed my diet to gluten & dairy free and low sugar. It is hard to make diet changes but it really did help me. I also take inositol.

PCOS is known as diabetes of the ovaries so if you follow a similar diet to diabetes it may help. It’s about regulating your hormones and your insulin levels through diet and movement.

Walking daily and yoga has really helped me and I use a cream for my face which has helped with facial hair but I still have to shave daily.

Last October I found I was pregnant again. It was such a surprise as I wasn’t trying but I was late with me period and did a test. My baby is 10 weeks old now and I’m back to sorting out my diet and exercise.

Being in my 30s I’m less hard on myself and feel so fortunate I’m married, have two beautiful babies and I’m in control of my diet and body. The shaving of my face daily really gets me down and I have days where I don’t want to leave the house so I take it easy on those days. I stock up on lots of treats (usually vegan as they are dairy free) to help those bad days.

I’m writing this as to hopefully give one person some hope. I can’t explain how severe my PCOS is but it is really bad and spent so many years hating myself. Even on my wedding day my nana said how fat I looked and I can’t look at my wedding photos anymore as I look awful. There is lots of help out and support.

 

[kittypaws]

Kinda hoping to revive this thread again cos it’s crap having no one to talk to about PCOS especially when it’s making you feel so shit

 

[slugella]

Hi all,

I gained a lot of weight which I suspect is from pcos as I always very petite and put it on quite quickly. Has anyone successfully lost pcos weight? Tia x

I have lost around 2 stone over two years, so very slowly! But doing it slowly has been the only way I've succeeded as whenever I've intense dieted I've always just put the weight straight back on.

I started regular exercise for the first time ever, a little bit of cardio but mostly weights. I started with a PT but now do it at home with a Kettlebell. I like HasFit on YouTube. I also go for a walk after dinner usually just a few circles round the block.

I have cut down on unhealthy processed foods but I still eat chocolate everyday as I love it I also let myself have pudding after tea as that's what would find hardest to cut out. I probably would have lost weight quicker if I had been stricter cutting things out, but life is short and I enjoy good food!

And finally I follow Glucose Goddess on Insta and I started some of her tips around the time I started to lose weight so that could have helped. They're pretty simple so even if they don't work it doesn't cost me time or money. She advises to eat food in a particular order (so on a meal you would eat your veg first then any meat then things like potatoes), I do her apple cider vinegar dressings for my salad, and the walking or other movement after meals tip was from her too.

My symptoms started improving around 6 months into these changes and I now have regular periods and thicker hair.

 

[Lola Ruby]

I was diagnosed early this year after suspecting I had it for quite a while last year, I've always been quite hairy, my periods were quite heavy (and I suspect I've had ovarian cysts rupture before too - one was so bad I was on my hands and knees once, wondering if I was in labour without knowing I was pregnant... not a fun time) and around five years ago I gained around 20kg / over 3 stone in a year. Towards the end of last year I was having really bad cramps nearly every day and the it even felt like there was something 'there', as if I could feel the cysts. I could even feel something pressing against my bladder. This prompted me to see my GP and after being referred to a gynaecologist in January they confirmed it. I felt really relieved that I finally had answers and have been seeing both a dietitian and endocrinologist, who prescribed Metformin and since a few weeks I've been taking Androcur (cyproterone) to try and combat some of the excess hair. My progress has been up and down this year and I've not always taken it as seriously as I should be but at the moment I'm eating quite healthily and going to the gym 3 times a week - weight training & cardio twice a week, just cardio once a week. I've lost some fat and can see some changes, but I'm a bit disappointed as I expected the weight to just fall off.

The weight gain really gets me down the most - I was always around 66kg / 10 stone 5 without too much effort but I feel like I just ballooned out of nowhere. Granted, this was around the same time I met my boyfriend and was going out for dinner etc more, but it just didn't feel normal, definitely not normal for me anyway. Around 3/4 years ago I managed to lose most of the weight but just gained it all back. I have managed to lose around a stone since the beginning of the year but it's sloooow. At the moment I feel pretty hopeless and like I'll never lose the weight and feel like 'me' again and part of me thinks I've ruined my health and body and maybe even caused my PCOS myself by gaining weight, not the other way round. Oh and of course there's the added bonus of facial and body hair - I have to shave my chin and neck every day and have dark hair in places like my nipples that I have to pluck and it just makes me feel horrible and unattractive

Sorry for this massive rant haha. Like some of you have mentioned, I don't know anyone else who has PCOS and am still figuring things out. I'm so glad that here I'm not alone at least

 

[pecan]

Popping in to report that 1 teaspoon of myo-inositol powder - dissolved in water - taken each morning seems to have completely obliterated my intense cravings / constant want to eat. It appeared to take effect the very same day that I started it. Initially I had some stomach upset, usually within 15 minutes of drinking it on an empty stomach. A week later this has settled down. I drink it slowly and have a breakfast such as porridge soon after. The real test will come after I next ovulate. If I still don’t experience any cravings then, I will be truly amazed.

I have also experienced a slight increase in headaches but this could also be due to dehydration. My biggest concern at the moment is hair shedding. I do lose a fair amount of hair but I feel like it may have increased. I can’t be sure if this is linked to the inositol or not but for now I will continue with 1 teaspoon daily and see how it goes.

 

[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!

 

[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!

 

[Luce0331]

Does anyone find theirselves being in low moods with PCOS? I have prolonged periods (lasting anywhere from a couple of weeks to months at a time) and during this time I feel so depressed, could it just be my messed up hormones?

 

[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.

 

[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.

 

[xbxbx]

PCOS and underactive thyroid here

I’m going to try a low GI diet in the hopes it will relieve some of my symptoms. My hair has been falling out like crazy for what feels like forever and I’m now beginning to see scalp where I couldn’t before. I’m also fed up of being tired all the time, having no motivation and a general feeling of depression.

I’ve been on levothyroxine for my thyroid for 15 years and the mini pill for PCOS for around 4 years (was previously on a different pill for around 10 years). I’ve never had any other treatment for either condition.

I don’t want kids so I’m not trying to get pregnant and I’m also not necessarily trying to lose weight, but more reduce bloating and puffiness in my face. I’m going to take baby steps with the low GI diet and figure it out as I go - as someone who regularly skips meals due to lack of preparation/discipline, I’ll find it quite difficult to get back into having 3 regular meals a day.

I’m only 30 but these conditions make me feel at least 60+ sometimes!

 

[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

 

[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

 

[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.

 

[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.

 

[Blond3g1rl]

They are only GP and not specialist so not expected to know about single con, however, some GPs do know more than others. You can request to see a different GP if you feel you need another opinion or help

I was diagnosed nearly 20 years ago. I’ve seen countless GPs, all they say is lose weight. I was on metformin, then one GP took me off it due to apparently no evidence of it helping with women with PCOS, now every GP I see refuses to put me on it again.
Under the NHS PCOS is treated as a fertility issue. I do not want children. Therefore no help is provided.
I have had to educate myself.