PCOS

[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

 

[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.

 

[Carefree]

We've got a new name for this, hooray.

https://www.archive.is/oldest/https...polyendocrine-metabolic-ovarian-syndrome-pmos

Do I believe anything will change or improve for us? Absolutely not but then again, I was told in my mid 20s, by an endocrinologist no less, that I'm very unlikely to have kids without intervention and lots of it, I'm just looking forward to menopause.

The fact it's always tied to fertility is infuriating and frustrating. Never mind what it has actually done to my body and mind, let's focus on non existent children or a man I've never met and his parental aspirations.

Good luck to the future generations but I'm tired. Just so bloody tired.

 

[Codiaeum]

I’ve gotten a period after 243 days, too!
It’s been three weeks on myo-inositol now, I’ve dropped from 2000mg to 1500mg about 10 days ago, as I felt my stomach was a bit upset and that seemed to do the trick.

 

[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

 

[fishsticks]

I was told by the nasty gynae to be considered for metformin I would need to lose some weight myself. But when speaking to some others, it seemed I was the only one told this? I have a friend who saw a gynae and was put on it almost straight away with no questions asked. I truly don't think she could be bothered, she was around 70 years old, turned up 40 minutes late to the appointment so I had limited time to speak to her anyway :/

I've just spoken with my GP who said she is going to expedite my referral to another hospital as we have tried all avenues and nothing is working

I've been put on metformin and have been on it for around 3 months... I've now been told this should not be prescribed in primary care and only by a consultant... It's definitely working. I went from being in a calorie deficit and not losing weight (or putting some on) to now actually losing weight... In those 3 months I've lost almost a stone and a half!

Edit: it's also given me regular periods and regular ovulation. I used to have a period every 30-38 days, but would not ovulate every month. I would only ovulate once every 3-4 months. Not great when trying to get pregnant!!

 

[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

 

[sleepflowers]

I have seen people say it's called PMOS = pissing me off syndrome which seems about right

 

[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.

 

[ThisIsMyDragName]

I’ve taken the plunge and have bought a tonne of the supplements that are supposed to help PCOS. I’m sure I shouldn’t be getting my advice off TikTok but it’s not like the GP said anything helpful to me at all so, anything is worth a try! Can report back in time if anyone would find that helpful.

 

[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?

 

[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.

 

[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.

 

[pecan]

Has anyone ever tried electrolysis? I’m tried of plucking the hairs from my chin and I’d rather do something about it so it’s one less thing for me to tackle when it comes to PCOS (with the other main concern being weight gain/lack of weight loss)

Bit different but I got a Philips IPL machine in Black Friday sales a few years ago. I’ve used it on my top lip, underarms, chin and various other areas. It takes a bit of dedication as you need to use it once every 2 weeks at first but once the hair has reduced or stopped you can do touch ups at longer intervals to keep things at bay.

I have extremely dark, coarse body hair and it’s working really well for me. My top lip used to be so dark and grow really rapidly, I hated it. Now it grows much slower and finer. Same with underarms. I only had a couple of chin hairs to deal with but so far they haven’t grown back in over a month!

I realise they are a very expensive device but as I understand it they last a long time so I personally think worth the cost if possible - often on good deals. I think I got mine with about £150 off. I don’t think it’s as long lasting as electrolysis, although tbh I don’t know how the two compare.

 

[Blond3g1rl]

There is probably more knowledge on this thread than most GPs have.

 

[RandomAlpaca22]

So I finally (after 9 months of waiting) had my gynaecology appointment, only to walk out sobbing from it. The Dr I saw was a horrible cow, I knew from the get go that she was not interested in helping me. I was told I need (yet another) blood test to confirm that I do have PCO/PCOS as currently I don't (even though my scan has confirmed cysts that the sonographer made note of), but I have had one many years ago. They're now telling me to get another, but the gynaecologist gave me no letter, and I've phoned my GP surgery and they cannot help either? Trying to call the hospital is impossible as it seems that department don't answer nor do they have a voicemail box! Just another victim of this shitshow they try and pass off as being the NHS!

Edited to add - I have not had a period in 6 months now, and have been told to get a blood test on day 1-5 of my cycle. Anyone know how I am supposed to know whereabouts I am during my cycle when I am not even menstruating

 

[fishsticks]

Super glad I've found this little forum. After years and years of battling with the GP over my periods, weight, mood, etc. I finally spoke with a GP who's husband is a gynae specialist and she took a good 30 mins to chat through everything with me. She's prescribed me metformin (off-label as it's not specifically for PCOS) as she's 99.9% sure I've got insulin resistance which is what I've been trying to advocate for YEARS. Although I've been pretty sure I've had it for years I only got diagnosed with PCOS in May and didn't get told anything about it. I wasn't advised on diet, supplements or anything so I did my own research. I've been taking myo-inositol religiously with folic acid for around 5 months now, but I've noticed zero change.

I'm on day 4 of metformin and not had any side effects yet, but I am quite hopeful it'll help with food noise and weight loss.

 

[anonesk223]

I was diagnosed with PCOS when I was 20, luckily I suffer fairly mildly compared to others - a bit of chin hair, and persistent acne. I do have regular periods but they’re very heavy. My biggest thing is the bloating, and also I have excessive thirst all the time.

I do have cysts as revealed by an ultrasound, however they’re apparently not worrying.

I got referred to endocrinology and all he said was “there’s nothing we can do”, “you look healthy” and “you’re not diabetic”. Yes I am aware 🫠