PCOS

[themuffinwoman]

Hey guys! I’ve recently just been for an ultrasound as I haven’t had a period since June 2022. The sonogram lady suspects I have pcos but needs to send the scans to my doctor for confirmation. I have been off contraception since January 2022 and we’d really like to start our own family. I’m just wondering if anyone has any positive pregnancy stories with having pcos? Just trying to find a glimmer of hope as it feels so gloomy at the moment

Hi! I’ve got PCOS, diagnosed when I was 15, got a 5 month old who we conceived on the first try however, I have worked so so hard over the years to be healthy, I was on a low calorie diet and exercised regularly. Because of the PCOS I gain weight easily, and it’s taken years to understand what makes my body tick and what doesn’t. Not to sound cliche but I found losing weight and just having a healthy diet and exercise helped my symptoms immensely. I found my body couldn’t deal with carbs and due to the chemical imbalance from PCOS, if I ate say 400 calories of carbs that’s more detrimental than 400 calories of protein. my periods became regular when I was down to an average weight and it got to the point where when I saw an endocrinologist during my pregnancy he said “I don’t know why you’re here”. Best of luck, a lot of GPs don’t know much about it at all so keep searching till you find a good one.

 

[Curly]

The past few weeks I have been seeing different consultants , endocrinologist and gynaecologist also my own GP.
Been prescribed metformin plus advised to start taking inositol and alpha liopic acid plus berberine.
I’m also going to try and follow a diet better suited for pcos.
mince I have my head around eating hopefully can build in more exercise

 

[LurkTwice]

Hi all, I’m hoping this thread will help! I’m 24 and never been officially diagnosed with anything (although my GP did say approx 3/4 years ago he thought I had “early stage PCOS” despite no testing and deciding not to look further into it as “I’m not looking to have children right now” . Basically ever since I started my period (around about 10/11) I’ve had bad periods. Particularly in high school/ sixth form it was absolute hell every month, the pain. Never passed out but was damn close to - sweats/nausea/starting to black out/shivers. Admittedly the bad ones have become slightly less frequent but they do still hit me sometimes. My periods aren’t hugely irregular but wouldn’t say they’re spot on we very 4ish weeks. I do struggle with excess hair - chin, neck, chest, around the nipples etc. And have always struggled with hormonal acne. I am of a normal weight, another reason why it has been a struggle to get this looked into more (even though I have been reading that “lean pcos” is a thing. I’ve been on and off at the doctors for years but they don’t do anything about it - I’ve been prescribed a few different contraceptives to help butI hate being on them as they make me utterly miserable. Honestly I would rather just have testing done so I can at least have some answers whether good or bad!!!

anyway, Sunday just gone I had terrible ovulation pain (I do sometimes get this but it’s never been as bad as it was on Sunday). I also had very heavy discharge, it seriously felt like a period it was gushing . The pain was terrible, it was my right ovary (normally I only get pain on this side). It felt like my ovary was on fire and being twisted and stabbed with a firey rod. I nearly called 111 as I was so thrown by it. I’ve also been struggling with anxiety and heart palpitations (nearly every day and throughout the day!) this past year which I’ve read can also be a symptom of PCOS.


i just want some peace of mind really - should I fight for myself to get testing, or does this not sound like pcos to you all? I feel so silly like I’ll be wasting resources but I am so tired of this affecting my life and not being taken seriously because I’m not looking to have kids right now!! I hate it

 

[lauren96111]

Hi all, I’m hoping this thread will help! I’m 24 and never been officially diagnosed with anything (although my GP did say approx 3/4 years ago he thought I had “early stage PCOS” despite no testing and deciding not to look further into it as “I’m not looking to have children right now” . Basically ever since I started my period (around about 10/11) I’ve had bad periods. Particularly in high school/ sixth form it was absolute hell every month, the pain. Never passed out but was damn close to - sweats/nausea/starting to black out/shivers. Admittedly the bad ones have become slightly less frequent but they do still hit me sometimes. My periods aren’t hugely irregular but wouldn’t say they’re spot on we very 4ish weeks. I do struggle with excess hair - chin, neck, chest, around the nipples etc. And have always struggled with hormonal acne. I am of a normal weight, another reason why it has been a struggle to get this looked into more (even though I have been reading that “lean pcos” is a thing. I’ve been on and off at the doctors for years but they don’t do anything about it - I’ve been prescribed a few different contraceptives to help butI hate being on them as they make me utterly miserable. Honestly I would rather just have testing done so I can at least have some answers whether good or bad!!!

anyway, Sunday just gone I had terrible ovulation pain (I do sometimes get this but it’s never been as bad as it was on Sunday). I also had very heavy discharge, it seriously felt like a period it was gushing . The pain was terrible, it was my right ovary (normally I only get pain on this side). It felt like my ovary was on fire and being twisted and stabbed with a firey rod. I nearly called 111 as I was so thrown by it. I’ve also been struggling with anxiety and heart palpitations (nearly every day and throughout the day!) this past year which I’ve read can also be a symptom of PCOS.


i just want some peace of mind really - should I fight for myself to get testing, or does this not sound like pcos to you all? I feel so silly like I’ll be wasting resources but I am so tired of this affecting my life and not being taken seriously because I’m not looking to have kids right now!! I hate it

I could of wrote this. I had awful periods not every month but some months I’d be exactly as you described. I was palmed off for years because I was also a healthy weight and had some what regular periods. It was only within the last 3 years I got diagnosed after pushing my GP to test my hormones and scan me. I suffer with facial hair and my weight is now up and the tests confirmed pcos. I’ve known for years I had it and it helped me mentally know I wasn’t going silly! The only treatment I was offered was a referral to the fertility clinic though as I was ttc. I would still push for tests to confirm the diagnosis. I looked into mum-insitol which is a vitamin many say had helped them with their symptoms. Hopefully you can get some answers

 

[LurkTwice]

I could of wrote this. I had awful periods not every month but some months I’d be exactly as you described. I was palmed off for years because I was also a healthy weight and had some what regular periods. It was only within the last 3 years I got diagnosed after pushing my GP to test my hormones and scan me. I suffer with facial hair and my weight is now up and the tests confirmed pcos. I’ve known for years I had it and it helped me mentally know I wasn’t going silly! The only treatment I was offered was a referral to the fertility clinic though as I was ttc. I would still push for tests to confirm the diagnosis. I looked into mum-insitol which is a vitamin many say had helped them with their symptoms. Hopefully you can get some answers

THANK YOU SO MUCH!! It sounds selfish to say but it’s good to know of other people who have similar experiences! It can be so isolating especially when you have doctors that don’t take you seriously.
I ended up booking a gp appointment last week with another doctor at my practice and thank goodness I did. She was absolutely amazing, was confused why I hadn’t been tested for pcos before! I told her the stuff was other doctors had said and she was very quick to shut them down. I cried in front of her haha. She took my bloods and has put me on the list for a TV ultrasound. I’ve checked the NHS app just before too and it looks as though my blood tests results came back showing (very ) high prolactin levels (>800mIU/L- normal range is 102-496!) and testosterone is above normal range too. Hopefully the doctor will call to discuss as googling is just causing me to spiral lol

 

[rasberry spoons]

Hello ladies, I’m new to this thread and wanting to rant/hoping to get some advice. I’m growing increasingly concerned about my health as I’ve not had a period in over 6 months, I’m not on contraception. I finally got a phone consultation with my gp as my weight has plummeted since having my baby in 22, I’ve always had irregular periods but haven’t had one for 6 months now. The gp has told me I possibly have PCOS but I can’t understand why he has said this as the periods are the only thing connecting the two? Has anyone had similar?

 

[slugella]

Hello ladies, I’m new to this thread and wanting to rant/hoping to get some advice. I’m growing increasingly concerned about my health as I’ve not had a period in over 6 months, I’m not on contraception. I finally got a phone consultation with my gp as my weight has plummeted since having my baby in 22, I’ve always had irregular periods but haven’t had one for 6 months now. The gp has told me I possibly have PCOS but I can’t understand why he has said this as the periods are the only thing connecting the two? Has anyone had similar?

Hi! I went to my GP a couple of years ago as I hadn't had a period in 6 months. I didn't even know what PCOS was at the time but the first thing my doctor said was that it could be that as irregular periods is one of the signs, so he would do some tests. I had blood tests and a scan. You need to have 2 out of the 3 "criteria" to be diagnosed with PCOS - irregular periods, cysts on ovaries, and/or excess hormones like testosterone in blood test.

Have they referred you for any other tests?

 

[rasberry spoons]

Hi! I went to my GP a couple of years ago as I hadn't had a period in 6 months. I didn't even know what PCOS was at the time but the first thing my doctor said was that it could be that as irregular periods is one of the signs, so he would do some tests. I had blood tests and a scan. You need to have 2 out of the 3 "criteria" to be diagnosed with PCOS - irregular periods, cysts on ovaries, and/or excess hormones like testosterone in blood test.

Have they referred you for any other tests?

Ahh thank you so much for sharing this, I’m the same. I’ve hear of it as I had a molar pregnancy when I was younger, I vaguely remember having a scan done years ago and there wasn’t any cysts around my ovaries, wether that changes in unsure? I also thought if you had PCOS you struggle with fertility but I’ve had a baby? (sorry if that sounds insensitive to anyone) I really want to push for more testing as it’s concerning me, my biggest concern at the moment is my weight. I go to the gym twice a week but I’m 17 stone and not losing any weight, not had a period in forever and I feel like I’m in a strangers body

 

[slugella]

Ahh thank you so much for sharing this, I’m the same. I’ve hear of it as I had a molar pregnancy when I was younger, I vaguely remember having a scan done years ago and there wasn’t any cysts around my ovaries, wether that changes in unsure? I also thought if you had PCOS you struggle with fertility but I’ve had a baby? (sorry if that sounds insensitive to anyone) I really want to push for more testing as it’s concerning me, my biggest concern at the moment is my weight. I go to the gym twice a week but I’m 17 stone and not losing any weight, not had a period in forever and I feel like I’m in a strangers body

You can still have PCOS even if you don't have cystic ovaries (which is confusing cos the condition is called polycystic ovarian syndrome ). Fertility struggles can be a problem but not for everyone. Struggling to lose weight is a common symptom, I did a post a little bit ago on this thread about how I managed to lose weight with PCOS. I would definitely push for the tests if you can and then at least you'll know for sure.

 

[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 rit 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!

 

[MrsFishandChips]

My doctors were so helpful. Rang at 8.30, was in the doctors room at 9am
He said I am hitting the threshold for PCOS, albeit I used to have regular periods before
I’m having a blood test to confirm my hormone levels and to rule out any deficiencies and also a scan to rule out any fibroids or cysts
Nicely told me weight doesn’t help and that I am just below the threshold for the combined pill which they’ve put me on to regulate my periods for now
If anyone has any advice I’m all ears

 

[bbbbbbb123]

My doctors were so helpful. Rang at 8.30, was in the doctors room at 9am
He said I am hitting the threshold for PCOS, albeit I used to have regular periods before
I’m having a blood test to confirm my hormone levels and to rule out any deficiencies and also a scan to rule out any fibroids or cysts
Nicely told me weight doesn’t help and that I am just below the threshold for the combined pill which they’ve put me on to regulate my periods for now
If anyone has any advice I’m all ears

I’m glad your doctor was helpful! Hopefully the pill helps you, it worked fine for me I was on it for 6/7 years I think x

 

[ThisIsMyDragName]

I’ve had problematic periods since they started when I was 9 or 10. I actually went on the combined pill at 14 or 15 to help. At uni, they gave me a blood test for PCOS and referred me for a scan that I never actually went to, based on other symptoms. The GP at the time said it was likely I had it. I think my bloods came back ok, though, I don’t even remember. 13 years ago I had a laparoscopy and laser treatment for endometriosis and a Mirena fitted. Because the laparoscopy found my ovaries were clear, I though nothing of it. I’ve now been trying to get pregnant (my Mirena, of which I was on my second one, has obviously been removed) and for the first time in my life I’m paying attention to my cycle and it’s a mess. Been doing ovulation tests and in the 4 cycles I’ve monitored, I think I only ovulated once, in a 43 day long cycle. I took a Hertility test which has shown high AMH and very high testosterone (or vice versa) which suggests PCOS. My excess body hair is unreal, my skin is a disaster, my hair is falling out in clumps and it’s only a matter of time before that starts to become obvious. My periods since Mirena removal have been light and not as I expected. They maybe used to be heavy and painful because of endometriosis but it doesn’t seem like much. I’ll go and see my GP in the New Year for a follow up, but I feel really bleak about it all, and I don’t really have anyone to talk to about it, even though my husband is very supportive and tries to understand.

 

[TravellingPants]

What a relief to find this thread, so many posts here I could have written myself. The thing I find difficult is that so many of the symptoms (for me) are appearance things that women have been taught are shameful, so it’s hard to talk about them with friends who aren’t having their hormones plotting against them. Also blowing my mind to see for the first time a link between PCOS and tubular boobs mentioned!!

I’ve not sought any help for it for a long time but I’m also not interested in having children so I doubt I’d be taken seriously by a GP. It is baffling to me that the focus for treatment is on whether I can bring hypothetical new humans into the world and not the effect that living with this has on me, a human who already exists.

I’ve been following a lot of PCOS accounts on Tiktok and finally ordered some supplements because the excess weight and hair, and a sudden thinning of my head hair this year is driving me towards finally taking control. I am trying to get myself in the mindset of the change to what I eat being an allergy/intolerance and treating it as seriously as that, because ultimately what the hormone levels mean is that my body doesn’t tolerate carbs well without disproportionate weight gain.

 

[knivesnflowers]

What a relief to find this thread, so many posts here I could have written myself. The thing I find difficult is that so many of the symptoms (for me) are appearance things that women have been taught are shameful, so it’s hard to talk about them with friends who aren’t having their hormones plotting against them. Also blowing my mind to see for the first time a link between PCOS and tubular boobs mentioned!!

I’ve not sought any help for it for a long time but I’m also not interested in having children so I doubt I’d be taken seriously by a GP. It is baffling to me that the focus for treatment is on whether I can bring hypothetical new humans into the world and not the effect that living with this has on me, a human who already exists.

I’ve been following a lot of PCOS accounts on Tiktok and finally ordered some supplements because the excess weight and hair, and a sudden thinning of my head hair this year is driving me towards finally taking control. I am trying to get myself in the mindset of the change to what I eat being an allergy/intolerance and treating it as seriously as that, because ultimately what the hormone levels mean is that my body doesn’t tolerate carbs well without disproportionate weight gain.

started lurking here recently but waaaait really?! love finding something to blame my body hang ups on...

also agree about the reluctance to treat if you're not trying for kids - i'm 21 and was offered metformin, asked the doc to advise based on my other health conditions (mainly me/cfs which got worse when they tried to change one of my chronic pain meds) and he decided against it bc it would be more beneficial in the future if i were to have fertility issues

i was meant to have a follow up appt with that dr in august but heard nothing so need to chase that in the new year actually, considering asking his opinion on WL injections bc i'm sooo sick of the assumptions they all make. i've got multiple conditions and take multiple meds, all with weight gain side effects, yet get a BMI lecture when i'm there for something as simple as a blood test

re. PCOS specifically, symptoms were periods twice a month and long bleeds (up to four months), acne, hirsutism, bad pain etc which was confirmed by a blood test with high testosterone / androgens. combined pill didn't work (estrogen and cycle triggered migraines), provera for a few years which stopped bleeds until it didn't, and now double dose of progesterone only pill which has mostly brought it under control. still get breakthrough bleeds but when i was still having proper periods mefenamic and tranexamic acid did help with pain and clotting.

and for context all my diagnoses stemmed from hashimoto's thyroiditis / autoimmune underactive thyroid!

 

[whyhellothere83]

Has anyone managed to get regular periods? I had 4 last year and haven’t had one for 4 months now. I’m unsure what I’m supposed to be doing, if anything. I was diagnosed last year and then left with no further advice.

 

[serenawaldorf]

Has anyone managed to get regular periods? I had 4 last year and haven’t had one for 4 months now. I’m unsure what I’m supposed to be doing, if anything. I was diagnosed last year and then left with no further advice.

I was diagnosed many years ago too but got no further advise. Recently diagnosed with type 2 diabetes which I now only after the fact realised is common, if not careful, because of the insulin resistance associated with PCOS..
I was without period for many years too but did find that when I lowered my sugar and carb intake that it would come back some months

 

[lauren96111]

Has anyone managed to get regular periods? I had 4 last year and haven’t had one for 4 months now. I’m unsure what I’m supposed to be doing, if anything. I was diagnosed last year and then left with no further advice.

I am on a few pcos Facebook groups and the general information is that you should have a bleed at least every 3 months even if it’s forced by medication. To stop the risk of the womb lining becoming to thick. I would ask your GP for the tablets that cause a bleed. I was diagnosed 3 years ago and was only given help as I was ttc. Now I’ve had my baby I’ve been left to it. I am on metformin that does seem to help a lot of women with their periods

 

[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

 

[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 ‘duck!’ 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!