PCOS

[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.

 

[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)

 

[bbbbbbb123]

That's what was confusing me as with PCOS you usually get heavy periods and I'm finding the opposite. Thanks so much, I really hope I can, I always wanted to be a mum xx

My sister has PCOS, she had to have IVF for her child but my friend also has it and she got pregnant without even trying so everyone is different! I went to the GP and we had to be trying for at least a year before they would offer any help, I don’t know what your situation is but just in case x

 

[soymilk]

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

I really hope this goes well for you!!

 

[oksobasically]

I reached out to my GP at the start of the year to see what support there was for PCOS and was a bit gutted at how useless it was. They said they couldn't do a referral if I wasn't trying to conceive?! I told them that when I was diagnosed I'd been told it would be near-impossible to have kids so it's been something that seemed out of reach but that at 30 it was something I'd want to look at if it was possible even if I'm not actively TTC. He agreed to do the referral on the basis that I might want to have a baby soon-ish, but what a joke as though it's only worth helping a woman when it's connected to her having kids as though I wasn't listing off all the ways it was impacting my life?!

I kept asking if they could refer to or even recommend a private endocrinologist since that's what looks to be helpful from reading online and they wouldn't and said they wouldn't be the right place for PCOS - it's bloody exhausting trying to advocate for yourself with a medical professional that clearly has no specific knowledge of PCOS (not helped by the lack of research, but I had detailed what I'd wanted to discuss when the appt was made about 3 weeks before so it's frustrating to speak to someone who is dismissive). I mentioned some people are on metformin for it and that was a nope too, not even a conversation they'd have. It made me so angry that PCOS is so common and yet there's so little support through the channels there should be.

I feel like my PCOS ties together so many other things within my health that are a bit (or very) off where they should be so I'm going to try and find a private professional (still thinking endocrinologist!?) to help me get across my symptoms. I've just started working with a dietician that specialises in PCOS (last time I posted I was going to try Saxenda, it unfortunately didn't work for me at all- an expensive disappointment!), I'm a week into going to the gym for the first time in years & I'm thinking about giving acupuncture a try.

I know a lot of people here are at the start of their journey with diagnosis but has anyone had any luck with support outside of your GP?
Are there any groups or charities that have been useful to any of you?

 

[bbbbbbb123]

I was going to say the same! My gp told me it raises all the wrong hormones so can be counter effective, she said swimming is good! I do an hours walk each day and that seems to help me. It’s very slow but it is coming off xx

 

[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.

 

[prinnygrace]

Update - currently on day 10 of my first period in 10 years. Super thankful to have it but my god when will it enddddd🥲🫠

 

[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

 

[TravellingPants]

Absolutely, low intensity is your friend (walking, swimming, slow weighted workouts, strength work like yoga or pilates). One of the main things a body with PCOS is dealing with is an imbalance in cortisol, which is the stress hormone. High intensity exercise elevates that further and keeps us in fight or flight, and your natural biological response to that is to hold on to fat stores because you might need them to do one of those two things.

I once did a full month of doing a Youtube HIIT workout every morning alongside calorie counting and didn’t shift a single pound. Replaced it with walking and ate exactly the same way and lost half a stone in the next two weeks! It’s wild the way what works for a typical hormonal set up is the worst enemy of a PCOS body.

 

[MrsFishandChips]

I believe I may have PCOS. My facial hair in the last 6 months has become rather excessive, and grows back within days. My skin is awful, my energy levels are shite and my mental health has dipped a lot. I cannot lose weight, and my stomach area Is particularly overweight. My periods are now coming 2-3 times a month in which I clot very badly for a 1-2 days, rinse and repeat the process in a few weeks.
In not in any birth control and haven’t been in the last 2 years
im going to phone my doctors in the morning. I’ve been putting it off for a while to get some answers but I’m pig sick of the abdominal pains and feeling low!

 

[BorisBear]

I waa diagnosed last year & was put on metformin, its really helped with weight gain & my periods started again. I feel like myself again.

 

[LongishCat]

Thanks for reassuring me, that's my experience when it comes to women's health - they have no clue. I'm sorry to hear you're having problems. I wish you the best of luck and hope everything works out for you x

Hi! I also have PCOS ánd a beautiful 8 month old daughter. I've written about my experiences here before.
Because of PCOS my periods just suddenly stopped for months on end. Went to see my GP, who referred me to a gynaecologist.
Started with clomid, then letrozole (as clomid was temporarily unavailable) and got pregnant after six cycles with that medication.
All in all, we started trying naturally in september 2019, I went to the gynaecologist and started treatment in august 2020 and fell pregnant early in 2021 right before our appointment at fertility. Gave birth to my daughter in october 2021.
It was a hard journey, but it was so worth it.
My SIL is due to give birth to her second son soon and she also has PCOS. She had to use injections. There are loads of options out there!

 

[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?

 

[noseybirdxo]

I'm just feeling a bit emotional, but my bf was with me and he was really supportive. I wear a UK size 8, so to be told I need to lose a few kgs was a bit shocking - although tbh, I do have this belly pouch that just can't seem be shifted! any advice anyone has in terms of anything I would really appreciate. I'm so glad there's a thread about it so I have people I can talk to who'll understand
thanks to those who've replied x

I’m glad you had someone there with you. That is absolutely CRAZY to be told to lose weight as a UK size 8!!!!!! Everyone has a belly pouch, it’s there to protect your organs etc try not to worry about it - I’m sure you’re fine the way you are

healthypcos_ (my fave account)
pcos.weightloss
thepcosnutritionist
pcosnutrition

are some of my fave accounts for learning about pcos and ways to help manage any symptoms etc - I would start there and there is a community on tiktok and youtube for it too x

 

[wafflesnwings]

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!

I've come across this thread as I think it's very likely I have PCOS (I've got 2 out of the 3 main symptoms and I am waiting for my ultrasound. It's honestly shocked me so much to the point I was crying for most of today). I've been reading everyone's posts, and wanted to say that even though I don't have a lot of advice or suggestions for you, you should feel such a sense of strength to overcome a rough relationship with food and be in a place where you are eating healthily and being emotionally gentler to yourself - it's a huge thing! The only suggestion that comes to my mind is making sure you have someone you can talk to (like a therapist or a person you feel completely at ease with and trust). I do relate to having a good/bad relationship with food and constantly being told to lose weight which doesn't help. I'm aware that I am big, but being told I am big does not help me - or many people - lose weight. I've even told people/doctors in the past how unhelpful they are being by saying that and not following up with practical advice or resources I can use. I wish more healthcare professionals handled this topic with greater compassion and sensitivity because it's so clear that everyone with PCOS is doing their best every single day. I want to give you - and everyone - a really big hug. This is a very tough thing to experience and live with

 

[knivesnflowers]

So I’m a little confused!!
Backstory- I did a blood test at home to test my hormones as think I suffer with PCOS. So I went private through work to see if I could get diagnosed but I also went through my local GP to get my thyroid tested. It came back normal
Got a scan of my ovaries done through the private GP and they’re totally fine too. I had my meeting with the private doctor and he said everything’s pointing to PCOS even though my ovaries are fine so I need to contact my local GP to go onto the pill.

Soooo I don’t know whether to go to my local GP (who has voiced they don’t want external input) and get a full blood work done or go straight to talk about the pill (currently not on anything!)

i'm the same, clear scans but meet two of the diagnostic criteria through blood tests. pcos is the hormonal imbalance that causes symptoms, pco is the presence of actual cysts but cysts are sometimes a feature of / caused by pcos associated hormones too - honestly it's quite confusing!

 

[Blond3g1rl]

I have PCOS. I was diagnosed in my early 20s by ultrasound, they were looking for endometriosis and found my lovely spotty ovaries instead.
I don’t have any ‘outward’ symptoms apart from I gain weight by looking at food and it’s very hard to loose it apart from ultra low carb or low calorie. I was previously on metformin but my GP took my off as he didn’t believe it worked, despite plenty of evidence showing it does. I am thinking of asking to be put back on it.
I was previously diagnosed with clinical depression, most likely due to PCOS, as there as no life event or situation which appeared to trigger it. I was on up 60mg of fluoxetine however since covid lockdown one I am medication free. Being able to work From home and get more exercise has really helped and mentally I am a different person to what I was.

 

[bbbbbbb123]

I've been diagnosed with PCOS. I've found my periods are really really light whenever I have them as well as very irregular. I know irregular periods are part of the symptoms but does anyone else get really light periods? Sorry for the TMI but I used to have heavy periods and enough to fill a pad with bright red blood, now the blood is mainly beigy brown and rarely is bright red coloured and the amount of blood would be enough to fill a tena lady. I'm worried as I really want children and if my periods aren't even working properly or how they used to I think it's game over for me being able to have a baby

My periods are very irregular, sometimes they’re heavy and sometimes they’re light. Try not to worry about being able to have a baby.. it might just take a bit longer or you may need some help but you will be able to. So many girls with pcos have babies xx

 

[slugella]

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

Yes! I got my official diagnosis today. I already was sure I had it from blood test and symptoms but scan confirmed it today. I don't know anyone who has it so good to have a thread.

I'm going to try and lose weight and see if it helps symptoms.