PCOS

[Elsie1988]

I was recently diagnosed and it has all sort of built up to me feeling really emotional about it today after seeing myself in a photo and having a secondary scan this week where the women looked concerned. I’ve been avoiding hormonal treatments due to past bad experiences. I tried a low form of Mayo-inositol for a few months and it did help me shift some weight but then with other stresses kept forgetting to take them and have seemed to come back on. Does anyone have any tips for weight loss, I don’t eat meat so thinking my carb heavy diet could be an issue? Can you be asked to be put on metformin as I’ve heard it works but haven’t been offered it just some active sessions that run during the work day

You can request to go on Metformin

 

[Codiaeum]

I got my blood results back and was very relieved to find that there's nothing in my body that produces hormones that shouldn't be producing them. Given the symptoms I explained the doctor said he would like to check on this specifically.
I didn't get a straight diagnosis for PCOS, but something else that was very interesting to me. They did a ton of blood tests and looked at some genes as well. Turns out I've a slight modification of a gene that deals with hormone sensitivity. The doc said it's "clinically unclear", which just means they don't know what it does, but in a couple of years, they might know more. It might make me a little more sensitive to male hormones, which could be a reason for excess hair.
I don't really mind that he wasn't able to tell me an exact diagnosis. And he was really excited about me being really excited about the genetics portion. I'm really interested in that and it seemed like many of his patients aren't

 

[soymilk]

What height are you? I'm not actually expecting you to answer that, your Dr has possibly been inappropriate with this advice but my niece is 5ft and wears a size 8 and she is a touch overweight, she hasn't been told to lose any weight by her GP though.

You have said you have a bit of a belly, which is a result of PCOS, I have it myself and it is difficult to get rid of it, I've tried for years. The best thing is to try and reduce your carbs, I've been using berberine for a few months and that has helped a little.

I'm just shy of 5'6, which is not small I know. Thank you for your reply and advice

I feel you here, I am also a size 8 but quite short so my weight is close to being overweight. Being told to try and lose weight is so distressing for me because I already eat low calories and exercise a decent amount, feels like I'd have to starve myself to lose anymore.

it's frustrating isn't it, especially when you know yourself if you're eating well and exercising. The symptoms are shit enough as it is!!

 

[MF92]

Does anyone really struggle with hair loss due to their PCOS ? Is there anything you have found that has stopped it/helped re-growth? The front of my hair is breaking and falling out so badly recently no matter what I am trying and my hairdresser mentioned she thinks it’s hormonal.

 

[noseybirdxo]

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!

It’s both great and sad that you finally have a diagnosis and I hope you’re feeling okay. How old are you?
It’s very frustrating when doctors tell you to lose weight because PCOS is so often the reason for weight gain, but I believe losing weight can help with a lot of the symptoms caused by PCOS. It’s very mentally draining hearing what doctors say but there’s so much science and help online that they never refer to.

 

[Thank(space)you]

How does it stack up with other symptoms of PCOS? I'd love to lose weight, but does it help with inflammation and the sugar cravings? I'd love to just be able to eat a chocolate bar and not have to want the other 4 in the pack once I've finished it.

The bit about the chocolate, I had no idea that was related to PCOS feel a bit emotional now as I've always been so hard on myself about this

 

[noseybirdxo]

hi everyone! just wondering, do any of you take any supplements to help with symptoms etc and have you found them helpful and do any of you take alternative medication to the pill and how does that help you?
- interested to see bc I really hate being given a pill as the "only" solution

Magnesium
Vitamin D
Myo-inositol (this is new to me)
Zinc
Evening Primrose
Omega 3

and I take metformin (this has helped insulin resistance and actually suppresses my hunger a bit) as a prescription! I do take the pill for context but plan to come off it in the next year as we’d like to try and have a baby and my endocrine consultant suggested coming off it soon for that reason. But Ive defo found differences from the above and introduced them one at a time. Magnesium helps with my tiredness as does the vitamin D, evening primrose for balancing hormones, zinc helps with skin and insulin resistance and a couple other things.

There’s others but look at healthy pcos on insta, pcos now mama, pcos nutritionist, etc and there’s loads of info there x

 

[pecan]

Has anyone got any tips/reassurance on having a ‘full bladder’ for the scan? 🥲 I’m an anxious weer lol and if they’re pressing on my belly I’m worried I’ll wet myself

Okay so I don’t want to make you feel worse but I actually started to wee as I was walking across the car park to my scan appointment because I physically couldn’t hold it any longer. I had no choice but to go to the loo as soon as I walked through the door. I would recommend drinking some water once you get there, a little while before your appointment. Don’t do what I did and drink it way before.

I explained the situation and they said it was fine and they could still do the scan. Having a full bladder helps with visibility on the scan but it’s not imperative it seems.

 

[bbbbbbb123]

I have an appointment with the doctor tomorrow, I’m pretty convinced I have pcos I have all the symptoms and I think it might be quite obvious, was just wondering what the doctor does is there any tests/blood work? I’m rather nervous so just wondering if anyone had a rough idea of what to expect?

I had blood tests and a scan x

 

[Lizzie Mintdrop]

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 🫠

Same, I was 19. I have a few chin hairs and I've always been a bit overweight. I'm going through perimenopause now though and it's been horrendous and I think that's partly due to genetics and partly due to PCOS. I think I'm nearing the end now and all peri symptoms seem to be wearing off. I do get bloating now and I never got that before

 

[whyhellothere83]

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’m on mounjaro to lose weight for my PCOS and it’s been amazing

 

[Cao97x]

I have PCOS. Best person to see is an endocrinologist not a gynaecologist, as PCOS is an endocrine disorder. My endo consultant was incredible. My very first appointment I left feeling like finally somebody understood EVERYTHING that I always knew wasn’t right about me and told me what I needed to do to fix it. She really changed my life and although I still deal with symptoms, I am a lot more accepting of them now.

 

[sleepflowers]

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?

It is an official symptom, I've had depression on and off for over 10 years now. Medication has helped a lot to manage it in the past few years. I can never tell whether hormones are the cause or whether they exacerbate what's already there!

 

[Codiaeum]

Has anyone experience with myo-inositol specifically for libido?
I've been struggling with a loss of libido for several years now and it's not improving at all. I feel sad about this, as I enjoy sex but am just never in the mood to initiate it.
I've tried agnus castus supplements a couple of years ago and they had quite an effect on my boobs, which got very sore and swollen, plus I had even more "milk" than usual at that time. After stopping that supplement the pseudolactation slowly went away. Didn't do anything for libido though.
In case relevant, I'm a "mixed case". I've the standard excessive hair and skin troubles, have been lucky weight-wise thus far and my insulin-resistance is normal. I'm eating fresh, homemade stuff everyday, so I'm quite sure that my diet is good enough and that my weight isn't anything that could possibly influence my libido negatively, but that it is the stupid PCOS -hormone-chaos itself. I exercise regularly and am not overly stressed or anything like that.


(I've a Kyleena hormonal coil which might be a contributing factor and I'm up for a replacement by end of this year, where I want to get advice from my gynae about whether a non-hormonal coil might be better.)

 

[redroses]

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?

I have PCOS. I had no period for two years, terrible skin and could not shed 1 pound. So i paid privately to get checked out. I was put on Dianette and it was the best thing ever. Ive never had skin issues or late periods anymore. I had got pregnant naturally also.

 

[wat3rmel0n]

Thank you ladies! Going to start the process today - seeing this thread has given me the boost I need to find out for good and if so, then try and manage it

 

[bongsandstuff]

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

Hi! I’ve recently been diagnosed with adenomyosis and PCOS (both within a week). I got diagnosed with adenomyosis via pelvic ultrasounds that showed a thickened uterus and abnormalities! The doctors ruled out PCOS as I didn’t have any cysts on my ovaries but I knew I had it as I had a lot of the symptoms (weight gain, excess hair, newly irregular periods, fatigue and inability to lose weight) so begged them for a blood test which came back with high testosterone and prolactin levels: therefore, suspected PCOS. The doctor has endocrinology look at it and they also agreed that the diagnosis was PCOS based on my bloods and irregular periods. Hope that helps! Wouldn’t wish this on anyone it’s so horrible

 

[Redline]

The bit about the chocolate, I had no idea that was related to PCOS feel a bit emotional now as I've always been so hard on myself about this

*hugs*

I've got a pretty high insulin resistance so my sugar cravings are insane. We usually have a treat in the evening after dinner.My husband is happy to have just 2 pieces of dark chocolate and my brain can't figure out how that is possible because I'm just craving all the sweet things.

 

[Lizzie Mintdrop]

Can anyone recommend some leggings / bottoms for extreme bloat?

I’m having such a difficult time at the moment with constant intense bloating, abdominal pain and lower back pain and I’m so, so uncomfortable in everything I wear. (Wondering if I should be querying endo with my GP?) I cannot stand the feeling of any waistband. I have some joggers and in a pinch I cut the waistband open to unpick the elastic and remove it. They only just stay up now

I don't wear leggings but I do wear chub rub shorts from Snag, which are very comfortable and stretch very easily and they do leggings, so I imagine they'd be very comfy and stretchy too.

With regards to the bloating, you could have slow gastric emptying, like me. This causes bloating, abdominal discomfort and lower back pain, for me. I've been taking myo-inositol and berberine for it for the last 6 months and it's stopped it, largely.

 

[Curly]

Could you share the advice and tips you received re diet and supplements please?

prescribed metformin plus advised to start taking inositol and alpha liopic acid plus berberine.
I have also since then added maca root to my supplements and a multi vitamin.
She advised me to really cut down on sugar and carbs and try to follow a more Mediterranean style diet. She also recommended this website and books
Verity website
pcos for dummies
Diet for pcos
I also drink lots of spearmint tea to help reduce facial hair