PCOS

[Blond3g1rl]

I'm getting so frustrated I just need to vent haha. I was diagnosed 4 years ago and my GP did the typical come back for help when you want to get pregnant. I've recently changed to a different surgery as I moved, so I spoke to them about struggling with my symptoms and that I would like to discuss the possibility of Metformin. He said it sounds like a good idea but that I would need up to date blood tests, so I did them last week. I had a message yesterday saying they wanted to speak to me as soon as possible to discuss the results, so I called up and they've booked me a call back for the 29th of June! Now I am just wondering what they've found and I'm desperate to know if I can start the tablets or not. I know it's only a month and doesn't make much difference when I've waited this long but I just want to feel better now

Good luck getting the metformin. Mine refused to renew a prescription as apparently it ‘doesn’t work’ for PCOS

 

[ThisIsMyDragName]

Hi everyone!

I was diagnosed with PCOS this morning. It was kinda unexpected as I never really thought much of my irregular bleeding, and only went to the GP for the coil.

I'm not really sure where to go from here. My GP was so kind, reassuring and informative, but I still feel lost. Luckily, I don't require any medication like metformin, but I only know the basics about PCOS. I'm 90% certain on not having kids, so idk why I'm feeling like this. Taking my hypothyroidism into consideration, I guess I'm just fed up of my body not doing what it's supposed to.

Idk which coil I want either, I've been indecisive about both since the start, and don't have any prior experience with the coil. GP recommends the hormonal coil as it gives endometrial protection.

Any guidance would be greatly appreciated

I had mirena coils for 13 years. It masked the majority of my PCOS symptoms and also helped stop my endometriosis from coming back after it was lasered off. My first was fitted immediately after the surgery and either because of the surgery or because it was my first coil or both I did bleed constantly for about 10 weeks which was brutal. Some tranexamic acid from the Dr sorted that out and after that it was great. The first Dr I saw told me to tough it out, the second said I never should have been left to bleed so long so I probably just had a rubbish experience there! The replacement of the mirena was… I didn’t enjoy it. I left my first coil in too long partly due to covid and partly due to just not sorting out my GP etc and they were nervous about removing it as they were worried it was brittle so went really slowly and I found it all a bit traumatic and may have screamed ‘fuck!’ at the top of my lungs during insertion whilst squeezing a nurse’s hand for dear life. How mature of me. The recent removal I had was absolutely fine, however (didn’t have another put in). I understand you can ask for local anaesthetic for fitting now so you could explore that? Sorry if this has put you off. I would just rather be honest. I am glad I had the mirena. Especially as my PCOS symptoms are absolutely beasting me now it’s been removed and I am wondering if my endometriosis has started to return as well!

 

[Blond3g1rl]

I’m sorry, I know this is a really old posts, what do you mean by tuberous breasts? Do you mean like fibrocystic/fibroadenomas?

No it is different. A quick google will show you, I’m not posting pics of boobs on tattle.

 

[ohwowsers]

Okay, thanks a mill. It's so hard to get answers and very distressing.

I'll go for ultrasound and see what happens

 

[TaurusWithLove]

Hi everyone!

I was diagnosed with PCOS this morning. It was kinda unexpected as I never really thought much of my irregular bleeding, and only went to the GP for the coil.

I'm not really sure where to go from here. My GP was so kind, reassuring and informative, but I still feel lost. Luckily, I don't require any medication like metformin, but I only know the basics about PCOS. I'm 90% certain on not having kids, so idk why I'm feeling like this. Taking my hypothyroidism into consideration, I guess I'm just fed up of my body not doing what it's supposed to.

Idk which coil I want either, I've been indecisive about both since the start, and don't have any prior experience with the coil. GP recommends the hormonal coil as it gives endometrial protection.

Any guidance would be greatly appreciated

 

[Blond3g1rl]

I’ve been doing quite a bit of reading and I’ve added a fair few supplements to my diet. I’m taking berberine, myo-inositol, zinc, magnesium and vit d. I have IR and they are all meant to help

 

[Carefree]

Self advocating is the best thing you can do, @honey&lemon. Sometimes, try as they might, GPs aren't up on everything and we all know too well, women's health issues aren't the biggest field of research.

I'm of the age where perimenopause is meant to be kicking in. My body's missed the memo and if anything, it's acting like a teenager. Delightful

 

[Lola Ruby]

I find the advice about what’s good for PCOS and what’s not so conflicting and it’s driving me insane! Don’t know what to eat and what not to does anyone have high prolactin on here? I do, they aren’t sure what’s causing it but I do feel it’s linked to potential PCOS or it’s just causing the symptoms altogether

Ughh I know. I'm seeing a dietitian and endocrinologist at the moment but they both don't have enough knowledge of PCOS to tell me what exactly I should be doing. I see sooo much stuff on social media / online too re: supplements and I'm trying a few of them but that can't be healthy for you either, taking a load of synthetic supplements all together?

 

[ChampagneBox]

I had to have a transvaginal scan for my diagnosis, along with blood tests / general explaining of all my symptoms. A scan is very normal, so try not to let it worry you too much. I hope all will go well for you

Thankyou! Does it hurt? I find smear tests a bit painful/uncomfortable

 

[CharlieTYBT]

I have this too try not to worry, my periods are very light just spotting some months they are a little heavier but only last a day like that and irregular. As others have said plenty of people with pcos go onto have babies with no help at all and sometimes it takes a little longer but there is plenty that can be done to help

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

 

[Blond3g1rl]

Have you been to the doctor and asked for some decent painkillers? I used to use mefenamic acid pills which really helped

 

[lauren96111]

My first time posting on here I was wondering if anyone has been on a mini pill and it hasn't caused any awful side effects for them? I had my little girl 6 weeks ago and I'm trying to figure out if going on the pill is a good idea. I can't take the combination pill due to migraines and being high risk of blood clots. I was on the mini pill years ago but it was before I knew I had pcos

 

[marshmallowfluff30]

Does anyone follow a low GI diet for weight loss? Was recommended by a dietician but I don’t really get it. I’ve ordered some cook books but all of the recipes need loads of ingredients

 

[bbbbbbb123]

I went to the GP to get medication as haven’t had a period for over 3 months now, I am TTC so we were chatting about that and how I need to lose weight to be eligible for help. She suggested metformin - does anyone have any advice or knowledge of it? X

 

[blossombloss]

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!

What things do you do to manage your stress levels?

 

[abeautifullife]

I spoke with my endocrinologist today and it turns out my thyroid is slightly under active. Also, I have elevated dhea (sp?), which may be causing my PCOS

 

[Codiaeum]

Does anyone have any advice for the embarrassing hair growth? It’s ruining my confidence and I can’t seem to win I wax and get sensitive skin, tweezing and ingrown hairs and spots, shaving and not as close as I’d like. Someone please tell me what on earth you do!

Do you have a diagnosis? I’m currently in the process and the doctor asked me whether an aim of any medication or management plan would be to lessen the hair and he said that with a diagnosis it could be paid for by my insurance. I’m in Germany, so this might be different everywhere, but given the price of laser and electrolysis, still worth exploring.

I’ve had electrolysis on my chin and upper lip. Works beautifully,however my body keeps producing new hairs. Another sign of hormonal problems, as the doctor told me.
I had a Philips Lumea and used that on my legs, it really helped there. It broke a few years ago, but my legs still are patchy in some areas. It never made a difference in my stomach unfortunately.

 

[oksobasically]

Has knowledge of PCOS improved on the NHS? I'd love to find a proper doctor who specialises in the area so I can have some proper advice and consultation.

I have no will power and constantly crave sugar and carbs, but I'm mindful that I'm not a spring chicken anymore and need to think about the future.

Unfortunately it doesn’t seem to have. I was diagnosed about 12, 13 years ago now and reached out to my GP start of this year after seeing on here and Reddit forums people discussing treatment/medication- I was told that they weren’t able to refer me unless I was actively trying to conceive. Pure rage inducing that I’m not considered to be worth treatment unless I’m thinking about doing something I have been told would not be a possibility by doctors at diagnosis.

In saying that, I think there’s more interest in this sort of thing these days and it’s worth trying to see if you’re in a place where there’s clearer routes to support and if I just lost the postcode lottery. Also maybe worth speaking to your HR/benefits team at work about bringing in some support for women’s health because I’m seeing some amazing private support companies out there, I know it massively depends on where you work but my place have been really receptive and are looking at a few different options that also support menopause/pregnancy/men’s fertility etc.

on the carb thing a pcos dietician I’m working with has recommended I take Inositol (with Myo & D-Chiro) and it’s early days but already impacting my carb cravings. Might be worth looking into?

It sounds like you’ve done so well so far with getting on top of things, I do hope you’re able to find the extra support to keep that motivation up!

My first time posting on here I was wondering if anyone has been on a mini pill and it hasn't caused any awful side effects for them?

I’ve been on the progesterone only pill for about 7 or 8 years, but I don’t get any side effects from it that im aware of. I don’t have periods being on it so it’s really convenient in many ways, apart from the waves of anxiety about what my body is going to do as or when I come off it and have periods again

 

[bongsandstuff]

Nice to see a thread on this as I haven’t got any one to speak to about it in real life! I was diagnosed 17 years ago and luckily managed to have my kids without any difficulty, but now I’m older I rarely have a period and have every symptom going. I was on the mini pill for a year to try and stabilise my hormones which worked but I came off it last month to try for a baby and nothing. Sore boobs and cramps, no bleed or period, negative pregnancy test and now massively paranoid I’m entering early menopause! Has anyone tried any medication that’s helped at all? My doctor is shit so I know they won’t be much use and to be honest I’m scared to hear potential bad news

Hi! commonly people take metformin (prescription) and/or inositol (natural supplement). They’re the ones you hear about the most! It’s reassuring to hear you had children as I’ve recently been diagnosed aged 22 with PCOS and adenomyosis and my biggest fear is not being able to conceive🥲 so terrifying to be diagnosed at a young age as well, seems as though no one understands! Hope it all works out for you‍🩹

 

[Sosig]

When I was younger around 15 I had problems with periods, extremely irregular like once a year and they would be ridiculously heavy and painful and I’d have to stay off school. I went for all sorts of blood tests and the GP told me I had polycystic ovaries... but not the syndrome???

I’ve never really understood that as my periods eventually became regular even without the pill etc and I’ve never had trouble with my weight, excessive hair, acne etc.

When I went for my first smear I was told my cervix was slightly tilted and have been for one at the hospital when the results show something (my phone won’t autocorrect it and I’m not going to embarrass myself trying to spell it ) and they said I was fine.

When I’ve been due on I’ve been known to have major PMT but that’s been resolved with taking vitamins now so I obviously lacked something.

I can’t help but wonder that guess from my GP was just a “I have no idea why your periods are irregular love” diagnosis? Because when I mention it to people no one has ever came across it before and I’ve been going through life thinking I’m going to have a challenge conceiving?