PCOS

[Elle Woods]

Oh yeah of course if you’re on contraception it’s not relevant! Just for those who aren’t I meant xx
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My doctor gives Norethisterone and I take it for 10 days. It’s part of the nice guidelines that they have to give you something if it’s been longer than 3 months (I think).. it might be worth trying to see a different doctor as the first couple I went to weren’t very helpful xx

Thank you so much. I'm going to bring this up at my next appt. It's been longer than 3 months now so hopefully I'll be able to get something

 

[Looboo]

Good luck! Definitely worth pursuing as I say, my nurses at my GP were always wonderful and listened to me but the actual doctors never really seemed to give me the answers I wanted and reassurance which is why I asked for a referral. I hope you get the answers as I know how draining trying to find out what’s causing you your symptoms is for anything - let alone pcos! Let me know how you get on if you’re happy to share! x

I will do! Thanks again x

 

[Donald23]

My appointment is in 8 days and I'm getting a tad nervous. I'm usually glossing over things at a doctor, as I think that they probably see way worse than me every day and i get nervous maybe should make a list of everything I want to mention.

Anyways, there's a woman I follow on Insta mostly for her beautiful Pilates, but she has PCOS and mentions that she is controlling it by avoid endocrine disruptors in her personal care products. Are any of you doing it? I understand the concept, but it seems like it would take so much effort plus fucking expensive as well and I'm not sure that I should be bothered.

Soy milk and soy products are huge disrupters. They cause my acne to spiral. They are quite an easy one to avoid and the difference you can see is visible. Other easy changes are from liquid soap to bar soap, I also did this and can see the changes. Switching out plastic food containers to glass is also a good one as it’s also environmentally friendly.
I’m not sure there are many in personal health products but I could be wrong.
I’ve been doing them my ova insitol for three months and have seen changes. I was wondering if anyone knew of a cheaper alternative?
Also been using Rheal foods for a month clean Greens and hormonal balance, apart from an acne spike this week, my bloating has considerably reduced and I’m losing weight steadily and weekly

 

[Chocolatelover123]

Hey jumping on this thread just wanted some advice re periods. I was diagnosed with PCOS and had the symptoms irregular periods etc. But my periods have been more regular recently but incredibly light mainly spotting. Has anyone else experienced this?

 

[Looboo]

Does anyone know if there’s a thread on here for other gynaecological issues? Or maybe someone here can help? As I’ve said on this thread before I always thought I had PCOS but looks like I don’t (I have symptoms but my bloods are fine and I don’t have multiple ovarian cysts). It’s looking like I might have endometriosis though, and I’ve been referred to the hospital.

Just wondered if anyone knows what I can expect when I get my appointment? I know that a laparoscopy is likely but just anxious about what else might be on the cards or what will happen when I first go x

 

[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

 

[Lizzie Mintdrop]

I have PCOS, I was diagnosed at 19, I'm 41 now. I must have a very mild version of it because the only obvious symptom is some hairs on my chin. I was diagnosed due to being given depo provera and consequently coming off it, my periods went a bit haywire. My GP told me at my first appointment with her that she suspected it was PCOS and referred me for an ultrasound. I was put on Cileste to sort my periods out but I came off it after about 6 months because I was no longer in a relationship. My periods were normal after I came off it. When I started a new relationship I was put on Dianette in the hope that it would help with the hairs on my chin, it didn't, I came off that a few years ago. PCOS hasn't affected my fertility as I have regular periods and my GP told me that with PCOS if your periods are regular it's because you are ovulating each month. Honestly, when I was diagnosed I was absolutely gutted, I thought it meant so much more than it did but it's barely been a thing in my life.

 

[Donald23]

I have recently found out about taking myo-inositol for PCOS. However, I can't tell if the cons outweigh the pros eg regulate periods but growing facial hair, just wondering if anyone else has taken it and it helped regulate your period without any unwanted side effects?

Currently taking for 6 months. Other than one mole sprouting more hair (under investigation for other causes), I’ve had no side effects. I do take other vitamins to outweigh certain things. Current vitamin list is Myo-inositol, probiotic, omega 3, multivitamin, apple cider vinegar and just start co-enzyme q. Probably be stopping the multivitamin once I’ve finished this set as I’ve found it’s added nothing

 

[Lovebugx]

I have PCOS , I was diagnosed at 19 , I'm now 35 . I wish someone could just wave a magic wand on my weight issues. I previously lost 4 stone ( I have always had a weight problem from childhood) . Since having my son , it's all gone back on but I've yoyod for 8 years now.
I was lucky enough that my doctor let me try Metformin a few years ago , but I couldn't cope with the severe digestive issues it gave me. The last time I had a scan and in previous times , I didn't have any cysts on my overies , it's more the elevated Testosterone levels on me. Other than the Metformin , and roaccutane for acne I've never been offered any other treatments beyond the usual Advise of " lose weight"
Id love to hear of things people have experimented with and any helpful advise.
I did try this Inositol , many many years ago and it wasn't readily available then , I had in powder form and I don't remember it having any affect on me at all, but I'm not sure if it's the same and the stuff I'm reading lately as. , Myo Inositol

 

[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

 

[Donald23]

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 bought a epilator in the Black Friday sales. I’ve used it twice, only on legs and armpits. Slightly painful but my hair growth has slowed. I did wax religiously from the age of 13 to 18 though so I think my hair is already slightly trained

 

[noseybirdxo]

Well I might as well ask - they can only say no! would definitely be good to talk to a specialist as I definitely felt like the last Dr I spoke to didn’t really care and it clearly wasn’t her area of interest. I’m going to chase up my next scan next week and hopefully get that done and see what that shows too, if anything.

Good luck! Definitely worth pursuing as I say, my nurses at my GP were always wonderful and listened to me but the actual doctors never really seemed to give me the answers I wanted and reassurance which is why I asked for a referral. I hope you get the answers as I know how draining trying to find out what’s causing you your symptoms is for anything - let alone pcos! Let me know how you get on if you’re happy to share! x

 

[Roarr]

I reached out to my GP at the start of the year to see what support there was for PCOS and was a bit gutted at how useless it was. They said they couldn't do a referral if I wasn't trying to conceive?! I told them that when I was diagnosed I'd been told it would be near-impossible to have kids so it's been something that seemed out of reach but that at 30 it was something I'd want to look at if it was possible even if I'm not actively TTC. He agreed to do the referral on the basis that I might want to have a baby soon-ish, but what a joke as though it's only worth helping a woman when it's connected to her having kids as though I wasn't listing off all the ways it was impacting my life?!

I kept asking if they could refer to or even recommend a private endocrinologist since that's what looks to be helpful from reading online and they wouldn't and said they wouldn't be the right place for PCOS - it's bloody exhausting trying to advocate for yourself with a medical professional that clearly has no specific knowledge of PCOS (not helped by the lack of research, but I had detailed what I'd wanted to discuss when the appt was made about 3 weeks before so it's frustrating to speak to someone who is dismissive). I mentioned some people are on metformin for it and that was a nope too, not even a conversation they'd have. It made me so angry that PCOS is so common and yet there's so little support through the channels there should be.

I feel like my PCOS ties together so many other things within my health that are a bit (or very) off where they should be so I'm going to try and find a private professional (still thinking endocrinologist!?) to help me get across my symptoms. I've just started working with a dietician that specialises in PCOS (last time I posted I was going to try Saxenda, it unfortunately didn't work for me at all- an expensive disappointment!), I'm a week into going to the gym for the first time in years & I'm thinking about giving acupuncture a try.

I know a lot of people here are at the start of their journey with diagnosis but has anyone had any luck with support outside of your GP?
Are there any groups or charities that have been useful to any of you?

I’ve found Verity really good - there are local groups and I’ve joined my local one and met up with people a few times which has been really helpful.

 

[blossombloss]

Have you had blood tests? I’m not 100% sure but I think to have PCOS you just have to have 2/3 of the criteria so if you haven’t got cysts it doesn’t mean you don’t have it. (I might be wrong)

This true from what I've heard.

OP push to get blood tests done!

 

[Sandydan]

Check out Myo-inositol.... Read some of the reviews on amazon they are amazing!!

 

[Chocolatelover123]

Just this month this is happening to me! But it’s the only time it’s happened. Very strange as they’re usually so heavy.

So weird isn’t it, I goggled it and apparently light periods are a symptom of pcos but I am not sure what it means

 

[Luce0331]

I know nobody has posted on here for a while but just thought I’d search for a PCOS thread on the off chance there is one, so pleased to find it!

I feel so so low at the moment about all of this as I am pretty certain I have PCOS but can’t get a diagnosis. Blood tests came back fine and ultrasound didn’t show multiple cysts - but they did say they didn’t get a very clear picture so I’ve got to have another scan soon.

I’ve got excess hair on face and body and thinning hair on my head. My periods have always been regular but the past six months they’re very early each month and this month I’ve had random spotting. They’re also very painful and heavy. I’m very overweight but trying now to lose it.

The Drs don’t seem to care unless I mention trying for a baby and then they’ll be able to help. What about my general life and mental health though?

They did say I could have the coil or pill but even though I’m not trying for a baby I also didn’t want to stop it happening (pretty relaxed about that) so those aren’t suitable solitons for me. But apparently it’s all they can do.

For now I’m just waiting for the next scan - but I’m worried they wont get a clear picture again as they said being overweight doesn’t help.


I forgot to mention in my post that the one thing they will give me is tranexamic acid - but agree it just works for the four days then after is awful!

With the blood tests, I had some when I had irregular periods and it came back fine, however it wasn’t until I had more three years later that they actually tested my Androgen (testosterone) and it was high and they then gave me my diagnosis, for some reason they never thought to test that the first time around Might be something to keep in mind, maybe find out if they tested yours

 

[ThisIsMyDragName]

Does anyone’s cycle length suddenly increase and have you found a reason why (other then Pcos)?
I’m diagnosed pcos but with diet, exercise and supplements I managed to get my cycle to vary between 28 and 36 days. I’m currently on day 45 with no sign of a period other than have a hard swollen stomach. Has anyone else experienced this or similar?

I had a mad 43 day cycle, I ovulated really late (I’m TTC so have been doing various tests and keeping track of everything and all that stuff). I am otherwise anything from 28 to 36 days since I started tracking, which is coming up for a year since my mirena coil was removed. I still have no idea why this was the case.

 

[MrsJones83]

Mine was diagnosed by blood tests and ultrasound

 

[bbbbbbb123]

Thank you so much. I'm going to bring this up at my next appt. It's been longer than 3 months now so hopefully I'll be able to get something

If you don’t already know about it, the charity Verity is very helpful. They have a fb group which has loads of helpful people in it x