PCOS

[Looboo]

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 they usually need two of the three following things to diagnose:

Cysts on ovaries (diagnosed through ultrasound scan)
Certain elevated hormones (diagnosed through blood test)
Typical symptoms (such as excess body and face hair, being overweight and thinning hair on head)

So for example even though I have the classic symptoms I’ve been told I don’t have it as my ovarian scans and bloods all came back normal.

It also means you can have PCOS without actually having ovarian cysts, as the symptoms and bloods can be enough to diagnose.

 

[ThisIsMyDragName]

Metformin has helped me in terms of helping with appetite I have started to lose weight on it. Slowly but it is coming off. I also got pregnant naturally in June and all I can put it down to is the tiny bit of weight loss and being consistent with the metformin. I did sadly miscarry, but I had clomid for my first baby so to even get pregnant on my own was a shock! In terms of facial hair I haven’t noticed a difference but other people do. It’s worth asking for. I know some GP’s can be funny prescribing it but mine was ok with it

Thanks for taking the time to reply! I really appreciate it. I’m sorry for your loss, the TTC journey is a challenging one, that’s for sure.
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i've been on metformin for about a week now! i'm also on the progesterone only pill which helped my skin massively, but some hormonal spots still pop up (realise this isn't an option for you rn though). metformin should help with the hirsutism after 8-12 weeks, and i was also told by another dr last year that it can help with fertility (was presented as a reason for waiting til i'm older to take it).

mine was prescribed by an endocrinologist at a hopsital appointment and he warned me that some gps are reluctant to prescribe, even if initially sorted by a consultant. might be as it's off label and meant for diabetes? i'm the same with weight and as above have been told it can help with apetite supression and then weight loss (iirc this is due to insulin resistant forms of pcos but not entirely sure)

Oh it was a timely post on my part! Yep, no POP for me at the moment. I really miss my Mirena. No periods, clearer skin, my facial hair was there but wasn’t quite as bad, was able to lose weight (although keeping it off was a bit challenging). Will see what the GP says!
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I don’t have much to add since you’ve already had some great replies but if you would like to conceive, tell the GP. Don’t make it sound like it’s not important to you. As soon as I told the GP I didn’t want to conceive at the time, I was offered nothing except the pill. It was since discovered that I cannot naturally have a child anyway but that’s beside the point.

Make it clear that you want to try for a baby, even if you aren’t actively TTC right now - they don’t need to know that. I hope everything goes well for you

Thank you, that’s helpful advice, I’m sorry you had such rubbish treatment though! The doctors know I’m TTC because I had my Mirena removed and not replaced last year, and prior to that I discussed coming off my SSRI ahead of TTC, although I failed on that and had to go back on but I’m managing pretty well on the absolute lowest dose of my particular medication. But just because I’ve discussed it with them doesn’t mean they’ll make the link! I will no go into the complexities of my work situation (new job, no enhanced mat pay even if I’d been here forever, need to do work to change that, also haven’t passed probation yet etc etc ) or my personal situation (husband invariably ends up working away from home when I’m ovulating) and will just focus on the ‘it’s been over a year and nothing has happened let’s come up with a plan’ type noises. I might be pushing 50 by the time a referral comes through

 

[Redline]

Honestly, if you can afford it - mounjaro has changed my life with weight loss

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.

 

[Luce0331]

I know most of us with PCOS struggle with weight but has anyone here lost some weight and then struggled to shift any more? I’ve been fortunate enough to lose nearly four stone but that still leaves me at 14 stone so obviously wanting to lose more, and I cannot for the life of me lose a single pound I’ve cut back even more on food and been doing lots of cardio, should I just accept my weight or is there hope?

 

[ThisIsMyDragName]

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.

 

[RandomAlpaca22]

I started metformin extended release last November and lost 3 stone within 3 months. I did stop eating anything sugary though (biscuits, chocolate, cakes etc) but didn’t up my exercise.

My period also came back within 2 months and has been regular since. So I do highlight recommend, especially the XR as didn’t have any side effect as opposed to with the regular

Did you have to press your doctors into prescribing metformin? I'm really struggling with my weight due to pcos (doesn't help either that I have BPD & ADHD that got missed for so many years it branched into an ED). I've mentioned my weight to them numerous times and all they ever offer me is a discounted slimming world/weight watchers subs or discounted gym membership, and the other GP I saw recommended the 800 calorie diet lol. I seem to drop weight for the first few weeks then as I settle into a routine with it the weight just starts piling back on

 

[soymilk]

Please could you link it xx

https://tattle.life/threads/endometriosis-adenomyosis-discussion-thread.15704/ here you go x

 

[lauren96111]

I’ve got an actual face to face appt with a female GP to talk about my results from my ultrasound (I’ve requested it rather than them calling me in). I want to see if there are treatment options. Are there treatment options? Is there something I should specifically be discussing?

I’m reasonably lucky in that my periods have, touch wood, not been too painful (my painful periods were, I think, due to endometriosis). I do get twinges where I suspect my ovaries are from time to time and often feel very uncomfortable the the pain is usually manageable. My periods have mostly settled but into a really long cycle, 35-38 days. My skin is a disaster in acne terms. I’ve started tretinoin which in some respects is making my skin look so much better and clearer and fresher but the hormonal spots persist so whilst my skin feels and looks smooth, there are also all these random spots. My body hair is outrageous, particularly facial hair but it’s bloody everywhere. I’m overweight and I really struggle to shift my weight. When I was on the mirena coil I managed to get down to a size 14 which was quite petite for me. I’m currently a 20 and feel enormous.

We are sort of TTC, we were taking it a bit more seriously then had to scale it back for various reasons. Now we’re just not taking any preventative precautions and I keep half an eye on my cycle tracking apps (but don’t test anything or take my temperature etc). As I approach my 40th year I’m mindful that time is against me. I guess any referral for fertility investigations would take ages so I should just accept something if it’s offered?

Should I try metformin to see if it helps me?

Metformin has helped me in terms of helping with appetite I have started to lose weight on it. Slowly but it is coming off. I also got pregnant naturally in June and all I can put it down to is the tiny bit of weight loss and being consistent with the metformin. I did sadly miscarry, but I had clomid for my first baby so to even get pregnant on my own was a shock! In terms of facial hair I haven’t noticed a difference but other people do. It’s worth asking for. I know some GP’s can be funny prescribing it but mine was ok with it

 

[Lizzie Mintdrop]

I tried inositol for four months, found it gave me painful boobs and period pains, which I don't normally get. I've moved onto berberine as I'd like to lose a little weight and I've found it to be better for weightloss without the side effects of inositol

 

[sleepflowers]

I have no official diagnosis as a pelvic scan showed nothing but I've had most PCOS symptoms for 7-8 years now It really gets me down. I get a lot of excess sweating too, especially during changes in temperature - does anyone else have the same? It's all over the body, not localized, which apparently means it's a symptom of another condition, not just sweating on its own.

 

[CharlieTYBT]

Yes the metformin played havoc with me I said i wouldn’t go back on it but it works for some people. Try not to worry I know it’s easier said than done but some people have naturally light periods and doesn’t mean anything. I was waiting to start clomid which is a fertility treatment to induce ovulation as I was told by the gynaecologist I wasn’t ovulating or if it I was it was very rarely. I could go 3-4 months without a period. The cycles before I feel pregnant were all 50+ days, I have no idea why I actually ovulated if it was the myo-inositol or I just randomly did. Like I say I know it’s easier said then done but there is lots of help you can get if your worried when it comes to fertility

Thanks so much for your reassurance, I haven't been able to switch off or stop worrying I'm glad you managed to have children, I hope I can get to one day also. That's been my main concern. Seeing posts like yours gives me a tiny glimmer of faith

 

[slugella]

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

Irregular periods is only one of the signs or PCOS so you could still have it. You need to have at least two of three features to be diagnosed - irregular periods, cysts on ovaries, and/or a certain level of androgens in a blood test. May be worth asking your doctor for a blood test and scan if you suspect you could have it. GPs can be pretty useless with PCOS and some may just dismiss it if periods are regular. I think hairs on chin is pretty common though if it's just a few so doesn't necessarily mean PCOS if that's the only symptom you have.

I'm not sure about what is counted as high testosterone. I've just Googled and an NHS page says 1.8 or less for women, but I don't know enough about it to give a helpful response sorry! Sometimes the NHS do set odd benchmarks though, for example what my doctor counts as normal vitamin D levels are actually pretty low.

 

[ThisIsMyDragName]

Hmm my AMH is well within range, its only Testosterone that’s high at 1.97

My Hertility results said high AMH can be indicative of PCOS but I don’t think that’s the kicker by itself. I think it’s testosterone that is a lot more indicative. So don’t go worrying about the AMH, especially if it’s in range!

 

[Milliehaha123]

Hey,
I've recently been told I have PCOS after fertility struggles - I'd never heard of PCOS prior to this, but after speaking to my GP and them informing me of the symptoms it seems this has always been a part of my adult life.
I'm 27, have acne break outs often, very very irregular period (last one 7 months ago, prior to that,1.5 years ago), thinning hair, scalp is itchy, have put on weight in the last 2 years with no change in diet (figured this was me getting closer to 30) and can't shift any weight! I'm active and eat healthy but nothing is working.
With everything going on at the moment my GP has said that any treatment isn't going to be quick, so any advice on loosing weight and managing symptoms would be greatly appreciated!

Hey! You’re in a very similar boat to me- it’s a bit shit but I’ve done a fair bit of research and found the following worked for me:
- limit carbs (shit) but apparently they increase your insulin levels. I now focus on complex carbohydrates which raise your blood sugar levels slowly
- walk at least 10k steps a day (you’ll be surprised how much this can impact your weight)
- I decided to pay for a private gynaecologist session (aware you might not be in the same boat and able to do so) but I’m just really impatient haha. She put me on hormone replacement therapy for 3 months (which sorted out my skin!) but also increased the hormone that I am missing. She also advised that I took solgar folate and solgar inositol daily (you can get these either at Holland and B or on Amazon) - I’m no expert so would advise you do your own research here but I found they sped up my metabolism. Good luck looking into it all, there’s lots of options xx

 

[Donald23]

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

Rheals clean greens and hormone balance have sorted my bloating out so much. I take with some fruit juice in the morning, the only times I bloat now is when I’ve over indulged on cheese and bread

 

[lauren96111]

I genuinely think I’ve got PCOS. I’ve been tracking my period since coming off the place in May of last year. And they’re showing as irregular (but only by a couple of days for my age range BUT I still have a period every month though), I’ve got hair every (chin, etc!), I’ve got stabbing pain where my ovaries are, I did a blood test that I bought off a website that tests female test and the testosterone was through the roof!!

And I’m struggling to lose weight too, unless I starve myself which I obviously don’t do. And majority of my weight sit on my stomach.

luckily I’ve got private healthcare with work & I spoke to a GP through work who assigned me to a- can’t remember what they’re job title is now (currently hungover) but someone with reproductive experience hahaha but I never followed it up. As I want to lose all my extra weight, I’m tempted to go back and follow it up. What do you all think? I’m scared that they’ll come back and be like nah it’s all in your head!

I have regular periods every Month. I was diagnosed from the bloods showing the same as yours and an interval ultrasound. I would defiantly go back

 

[pecan]

Hi all Glad I’ve found this thread. I was diagnosed 6ish years ago when I was 24. Had various issues ever since starting puberty at about 11. Think I was 13 when they first put me on the pill! I’m 30 now and I was just on Eloine pill for 2 years (moreso to treat PMDD) until I decided to come off it 4 months ago cos it turned me into a zombie.

Now all the symptoms have come back with a vengeance and I feel like shit. Skin worse than ever, hair falling out of my head but growing uncontrollably everywhere else, mental health is a wreck, can’t stop eating everything in sight, absolutely no energy, no self esteem. Been tracking my basal temperature since I came off the pill (just for health insights cos there’s a possibility of premature menopause for me, I seem to still have somewhat of a cycle atm though), first two cycles were great but cycle three my body must have remembered that we have PCOS and I didn’t ovulate until about day 50 and when my period arrived I was bed ridden for three days. Think I’d rather go back to being a zombie. Feel totally defeated.

 

[boomska]

I genuinely think I’ve got PCOS. I’ve been tracking my period since coming off the place in May of last year. And they’re showing as irregular (but only by a couple of days for my age range BUT I still have a period every month though), I’ve got hair every (chin, etc!), I’ve got stabbing pain where my ovaries are, I did a blood test that I bought off a website that tests female test and the testosterone was through the roof!!

And I’m struggling to lose weight too, unless I starve myself which I obviously don’t do. And majority of my weight sit on my stomach.

luckily I’ve got private healthcare with work & I spoke to a GP through work who assigned me to a- can’t remember what they’re job title is now (currently hungover) but someone with reproductive experience hahaha but I never followed it up. As I want to lose all my extra weight, I’m tempted to go back and follow it up. What do you all think? I’m scared that they’ll come back and be like nah it’s all in your head!

 

[bbbbbbb123]

Will only be offered the mini pill due to my weight sadly - and I find it hard enough to remember medication, let alone something I need to take daily at the same time every day.

I've seen every GP at my surgery over the last 2 years, none of them have a clue including the women, every single one suggested the pill to hide the actual problem, I only said yes the last time so it could be put on file that I've tried it.

Ahh that’s shit, have you tried metformin?

 

[ThisIsMyDragName]

I always lose this thread! Just thought I'd give an update into my ongoing problems with the GPs not taking my PCOS seriously lmao.

I outright refused a blood test (on mental health grounds as it is too much stress being made to wait in a 2 hour queue, not to mention the phlebotomists are always rude as fuck, the last one made 5 attempts to draw blood and failed each time) as per the NHS website I meet the criteria to be diagnosed with PCOS (symptoms and internal scan of my ovaries which confirmed bilateral PCOS with the right side containing a lot more cysts than the left, sonographer confirmed this was textbook pcos as she sees it all the time in her job). Gynaecologist refused this and blamed all on my weight, was told to stick with a diet and that my symptoms would subside. I put in complaint about her as she was super unhelpful and dismissive of my claims. She was also adamant that my referral form had irregular periods as the reason for the referral but it wasn't (I found the referral and it point blank says for severe period pain).

I left it for a few months as couldn't cope with the lack of help and my mental health got worse so my physical health became less of a priority. After 6 months of no period I spent almost all of October bleeding, in excruciating pain alongside with vomiting, diarrhoea and constipation. Spoke to a GP who told me the only option was the mini pill. I am 16 days into being on this pill and I have never, ever, EVER felt so depressed, suicidal and miserable. I have gained almost 9lbs. The pain I am in everyday has amounted into me taking 7 sick days. GP is supposed to be calling me back at some point to discuss, but what other options can there possibly be for me?

I was put on this pill as due to my BPD I physically cannot cope with having one (it is an extreme trigger for me), when I voiced that the unknowningness of this pill was a huge factor as to why I don't want to take it, I was told to try it and that this is my last option due to my BMI being too high for the normal pills with the 7 day break.

I have tried my best with losing some weight and at first I was slowly losing at the rate of 1-2lbs a week, however now they've put me on this pill that's gone out the window too as my weight just seems to rocket every single time I weigh myself now, regardless of the fact my eating habits haven't changed in the slightest.

I'm honestly at breaking point with this and right now I don't see any possible solution.

I don’t know if a hormonal coil like Mirena might help? I think it’s a lower level of hormone than the mini pill, but I suppose the risk of side effects is still there. It’s obviously not for everyone, the insertion wasn’t the most fun thing I’ve experienced in my life but I got on ok with it after that.

You have a right to complain about your care and to ask for a second opinion for sure. Really sorry this is happening to you.