PCOS

[ThisIsMyDragName]

Please can someone tell me what is classed as high testosterone?

I’ve done a private blood test through hertility and it’s flagged up high testosterone at 1.97, but when I look at nhs ref ranges it’s not in the high range

however, now I’m connecting the dots on some other issues ive been having and thinking I possibly could have mild PCOS? I’m having a few dark thick hairs on my chin, been there for about a year, I did mention to the dr last year and she asked what my periods are like and they’re absolutely regular, cycle length varies plus/minus about 4 days but pretty regular, and so she wasn’t worried. Before I was on the implant for 7 yrs was a different story though..

also got high cholesterol and although blood tests show my fasting blood sugar is okay, I do often get low blood sugar symptoms at certain times of day

I sent my results from Hertility to my GP and they referred me for an ultrasound which confirmed cysts on my ovaries. I did have plenty of the symptoms as well, but you need two out of three of: blood tests with high AMH and/or testosterone, symptoms and presence of cysts in the ovaries for the diagnosis. You don’t need all three.

 

[soymilk]

It's destroyed my confidence in myself

I felt this so much

 

[RandomAlpaca22]

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!!

Ah I'm so glad it's working for you!

Unfortunately I haven't gotten anywhere with my complaint regarding the awful gynaecologist I saw. I'm now on mounjaro and for the first time (ever!!) the scales are going down. I can't comment on how its effected my cycle yet as I haven't had a period since early December, but a lot of ladies on the MJ thread did say it made them more regular, which is definitely a bonus for someone like me who never knows when it might arrive

 

[ThisIsMyDragName]

Thankyou! So your doctor took your hertility results seriously? If you don’t mind me asking did you have high testosterone too?

Well…. he did and he didn’t. He obviously wasn’t that impressed by my results, clearly they weren’t abnormal enough for him. I don’t think my medical notes have travelled (I’ve lived in Wales, England and Scotland) so he probably didn’t have any note that I had a laser surgery for endometriosis and have had lifelong period issues, but once I reeled off all the symptoms I have and how they got worse since my mirena coil was removed, he was more prepared to listen. He was a bit of a typical man about it, but I did get my referral. Which he fluffed up and it was rejected at first due to lack of information, and took 6 weeks to be sorted and resent, so it took 6 months for the scan. I have high testosterone and very high AMH I think. Whilst high AMH is ‘good’ it also can be an indicator of PCOS, too! I’m going to try and engage with a female GP to see if they’ll give me any treatment options.

 

[Codiaeum]

I've been supplementing the myo-inositol for a week now, 2000mg. My brain says it's too early to notice any effects, but my ovaries give me very very insistant ovuluation twinges. I haven't felt this for over half a year, also haven't had a period for that time. I'm a bit baffled whether it really is from the inositol. I know the Kyleena IUD will have suppressed my period but I never went this long without one and even my gynaecologist was asking whether there really wasn't anything. I was afraid she was going to tell me I'm likely in perimenopause, I'm only 35.

 

[pecan]

Anyone got any tips coming off and getting them to start again sooner or is it more of a wait and see thing?

Do you mean getting your periods to start again sooner? Sadly it’s not the kind of thing you can ‘force’ to happen. I’ve been on and off the combi pill for the last 18 years so I know it’s frustrating when you want your body to have some kind of it’s own natural rhythm.

In terms of helping your cycle, keep your stress levels low if possible - cortisol will wreak havoc. Nourish yourself with nutritious foods, birth control pills can be quite harsh on the gut and digestive system. Some form of exercise might help too. You might have an active job, or you could try going for walks / runs / whatever. I found that my cycle was at its most consistent when I was exercising frequently, before that it was all over the place. Obviously these things still won’t force your period to come back but it’s about trying to bring your natural hormone levels into some kind of balance - tricky with PCOS of course.

Another thing to note is that even if your period does return, there’s no guarantee you’re actually ovulating. It might just be withdrawal bleeding / anovulatory bleeding - common with PCOS. When I came off the pill I started tracking my basal body temperature straight away. I’m not trying to conceive but I wanted to know if I was ovulating. I learned how to use a ‘Fertility Awareness Method’ to track my cycle using certain biomarkers like basal temperature and cervical mucus quality. I’ve been able to confirm ovulation for the last 5 cycles which feels really good. I log it all in the Read Your Body app along with symptom tracking and whatever else.

 

[CharlieTYBT]

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

 

[bbbbbbb123]

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!

I think being told to lose weight isn’t nice to hear no matter how confident/what size you are so you aren’t definitely not alone, it knocked me quite a bit! Especially when having pcos can make it harder to lose weight x

 

[LongishCat]

I've got the official diagnosis of PCOS today. But my gynaecologist was very sweet and helpful and prescribed pills to get my period/ovulation back. Really happy my GP had the right idea and sent me to a specialist right away.
Feeling hopeful

 

[Codiaeum]

Thinking of getting an IPL machine, my hair growth is so fast and cba shaving anymore.

Has anyone tried it and found it works with PCOS?

I've had a Philips Lumea - it worked a bit on my legs, but not on the areas where I actually wanted it to work, my stomach, bikini area, face, etc. I'm the perfect fit with light skin and dark thick hair. The hair on my legs noticeably reduced after a couple of month and grew slower and a bit thinner. Everything else was unimpressed, regardless of how often I used it.
The device broke after 1.5 years - got a full refund, but not impressed with the life expectancy, tbh, I didn't get a new one.
I've gotten electrolysis on my chin - hurts, but the hair stays away.

 

[Elsie1988]

Hi all. 15 years of fighting and I now have a new doctor who has listened and understands the struggles of trying (and failing) to lose weight with PCOS.
I've been prescribed metformin as an off label trial. Has anyone had any success with this please?

It really worked for me as was prescribed it o help with fertility. Within three months I had regular periods, lost weight and got pregnant in less than a year so it really helped me. Post pregnancy I went back on it, really focused on diet and exercise and got pregnant a second time and at my scan the person mentioned there were no cysts on my ovaries. During my c-section on my first the doctor commented on many cysts were on my left ovary so over the years I’ve managed to help my PCOS a lot but required metformin, a DF, GF diet plus walking everyday. Good luck and hope it works out for you

 

[ThisIsMyDragName]

I am so, so tempted by mounjaro. 7 months PP and I weigh more than ever before and I just can’t shift it. Absolutely delighted to have been able to conceive naturally against all odds, but I’ve never hated my body more. It’s not very compatible with my maternity pay though

 

[ThisIsMyDragName]

6ish months after I asked for a referral, I’ve got an appointment through for my scan to have a look at my ovaries. It’s in just under a month’s time. I had been prepared to get the scan privately but other stuff going on in my life meant I’ve not got round to booking it, so that’s saved me a few pennies. I’m still a bit grumpy that the referral was delayed for a few weeks because the GP couldn’t be bothered to put down any of the symptoms, etc that I described to him as the reason for referral, so it was initially rejected and I guess a bit lost in the system for a few weeks at the surgery, but I also get that a 6 month wait in the NHS is pretty good going, all things considered!

 

[Donald23]

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

I'll go for ultrasound and see what happens

Diagnosis is usually based on three things but you can have Pcos and just be showing 2 - it’s called the Rotterdam criteria. However all other options have to be ruled out as well

 

[lauren96111]

Just looking for a bit of advice/experiences on taking the progesterone only pill for PCOS, I was at the doctors yesterday and it has been suggested that I try this to help with my moods (suspected Pmdd) and irregular periods. Has anyone taken this before and it’s made a massive difference? I have already started a full lifestyle change at the start of the year trying to lose weight which isn’t shifting, but my PCOS symptoms and moods were really getting me down. TIA x

I was on it maybe 10 years ago and I remember feeling really irritable and having quite low moods while on it. However I was late teens, early twenties then so not sure if that played a part and I hadn’t been diagnosed with PCOS back then. I’ve just started taking it again 2 weeks ago after having a baby and up to now I haven’t felt any difference mood wise. Hopefully someone will have knowledge for you, hope it works for you x

 

[Observing_Annie]

Metformin didn’t help me with weight loss but did start to regulate my periods.
My endocrinologist gave me some great advice in regards to diet and supplements and helped explain things better than any GP. I have now had weight loss surgery and hope that it helps me in conceiving. Once I can fully eat normal I will be back on my PCOS friendly diet and supplements and hopefully I won’t need Metformin

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

 

[Gizmo92]

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!

 

[ThisIsMyDragName]

Does anyone have any advice on weight gain? Is metformin something that can help? Thinking about asking the GP to prescribe but they are useless not sure if to try myo-inositol instead but no idea what brand as there are so many!!

I found a ‘cheat sheet’ on TikTok (I know… but it’s not like my GP is helping me) that suggested 4000mg of myo-inositol per day. I basically went on a massive supplement ordering spree based on this cheat sheet and bought it all up. 4000mg seems to equate to 4 myo-inositol pills a day so I take them morning and evening. I think mine have folic acid and something else in them. I went for the cheapest 180 pill jar they had because the total cost of the pills was a bit eye-watering! I’m only about 4 days in so I can’t tell you if they work or not!

 

[Lizzie Mintdrop]

I've only really suffered with bloating since peri menopause but honestly, the only thing that stops bloating for me is limiting the amount I eat. It doesn't seem to matter if the food is healthy or not but if I eat 3 meals a day I bloat. Now, I only eat breakfast and evening meal, giving both meals a substantial time to digest is the key

 

[pecan]

Had my ultrasound scan today. My GP couldn’t have messed the referral up more to be honest. He told them daft things in my referral that weren’t true about not having periods. I never told him I wasn’t having periods, I told him there was no regularity to my cycle. He was dismissive of my blood test results but when I told the radiographer that I had positive blood results indicating PCOS through a private blood test and a bunch of symptoms she pointed out that was all I actually needed for a PCOS diagnosis. Which I did know, but I was at the mercy of a daft male GP. Anyway, there are signs of PCOS in my scan, which is validating I suppose! Don’t think it’s the worst case of PCOS she had ever seen but it’s there. I’ve got a couple of weeks wait till the results go to the GP then I’ll see if they’re prepared to do anything to help treat it.

I’m pleased for you that you have that validation despite the silly GP. Hope you are feeling okay after the diagnosis, it can be tough to get your head around even if you fully expected it. I hope you have better luck with receiving treatment than I did. I was asked if I wanted to try for a baby and when I said no it was basically take the pill or nothing, despite the various symptoms we all have to live with!