PCOS

[pecan]

Wonder what it’s like to be healthy with no problems eh

I think about this all the time! It's one of those things where you have so many symptoms and effects that you lose sight of what issue is stemming from what condition / medication / whatever. Like when I was on the pill I would always be asking myself "Do I feel this way / is this happening because I'm on the pill or because of something else?" and if you have comorbid health conditions it's basically impossible to find the root cause or figure out what's linked / not linked. I often spiral into a pit of 'why can't things just be simple,' and then feel bad because someone else has it worse but that will always be the case and it doesn't invalidate what we all go through every day with this condition.

I'm glad you're feeling a bit better and I hope that continues for you. I know as a general rule when it comes to the pill people usually say "Give it 3 months" (when starting / stopping / switching) but I believe it can take far longer than that for things to regulate / go back to normal. Whatever that is!

 

[Luce0331]

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?

 

[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!

 

[pecan]

Does anyone have experience with trying spearmint tea or capsules for reducing various symptoms? I’ve seen it mentioned a lot in relation to lowering T. I’ve recently started drinking 1 or 2 cups of loose leaf spearmint a day and I desperately want it to help but I’m someone who really struggles to stick with anything long term to see results I thought maybe if anyone has had a positive outcome from it, it’ll help me keep up with it.

 

[Redline]

Glad to have found this thread. I was diagnosed with PCOS nearly 20 years ago (damn I'm old!) and now in my early 40s. When I was first diagnosed the doctors were rubbish and knew nothing about the condition - they originally prescribed me the pill which played havoc with me and I eventually came off them a year or so later.

During lockdown I finally started to watch what I was eating more and made an effort to do more exercise (daily walks/buying a crosstrainer for the home) and went from 270lbs down to around 235 - resulting in my periods finally becoming regular and having no sign of polys on my ovaries! B

But since returning to work I've plataued and find myslef stuck in a rut - I've also been drinking a lot more as my work has become super stressful.

Has knowledge of PCOS improved on the NHS? I'd love to find a proper doctor who specialises in the area so I can have some proper advice and consultation.

I have no will power and constantly crave sugar and carbs, but I'm mindful that I'm not a spring chicken anymore and need to think about the future.

 

[lauren96111]

My first time posting on here I was wondering if anyone has been on a mini pill and it hasn't caused any awful side effects for them? I had my little girl 6 weeks ago and I'm trying to figure out if going on the pill is a good idea. I can't take the combination pill due to migraines and being high risk of blood clots. I was on the mini pill years ago but it was before I knew I had pcos

 

[oksobasically]

Has knowledge of PCOS improved on the NHS? I'd love to find a proper doctor who specialises in the area so I can have some proper advice and consultation.

I have no will power and constantly crave sugar and carbs, but I'm mindful that I'm not a spring chicken anymore and need to think about the future.

Unfortunately it doesn’t seem to have. I was diagnosed about 12, 13 years ago now and reached out to my GP start of this year after seeing on here and Reddit forums people discussing treatment/medication- I was told that they weren’t able to refer me unless I was actively trying to conceive. Pure rage inducing that I’m not considered to be worth treatment unless I’m thinking about doing something I have been told would not be a possibility by doctors at diagnosis.

In saying that, I think there’s more interest in this sort of thing these days and it’s worth trying to see if you’re in a place where there’s clearer routes to support and if I just lost the postcode lottery. Also maybe worth speaking to your HR/benefits team at work about bringing in some support for women’s health because I’m seeing some amazing private support companies out there, I know it massively depends on where you work but my place have been really receptive and are looking at a few different options that also support menopause/pregnancy/men’s fertility etc.

on the carb thing a pcos dietician I’m working with has recommended I take Inositol (with Myo & D-Chiro) and it’s early days but already impacting my carb cravings. Might be worth looking into?

It sounds like you’ve done so well so far with getting on top of things, I do hope you’re able to find the extra support to keep that motivation up!

My first time posting on here I was wondering if anyone has been on a mini pill and it hasn't caused any awful side effects for them?

I’ve been on the progesterone only pill for about 7 or 8 years, but I don’t get any side effects from it that im aware of. I don’t have periods being on it so it’s really convenient in many ways, apart from the waves of anxiety about what my body is going to do as or when I come off it and have periods again

 

[soymilk]

@lauren96111 the mini pills were terrible for me, i take adepal, it's a combined pill, it has quite positive statistics and i don't experience any bad side effects from it. @pecan i usually drink peppermint tea after lunch and dinner, i've been doing this on/off for years really (long before i knew i had pcos) as i have always found it helps with my digestion and bloating.

i've been trying this new diet for the last two months or so, where i've basically increased my protein intake and tried to make it the priority for each meal - this has helped as i don't feel the need to snack in between and i'm definitely feeling a lot better with myself than i was 6 months ago; i aim for a macros split of 35% protein, 35% carbs, 30% fat (i don't know if this is helpful to anyone but it helped me). However, i did recently have a cyst that burst, has anyone else experienced that? It was quite scary at the time but luckily it wasn't that bad and i was better within a couple of days.

 

[pecan]

I was told that they weren’t able to refer me unless I was actively trying to conceive. Pure rage inducing that I’m not considered to be worth treatment unless I’m thinking about doing something I have been told would not be a possibility by doctors at diagnosis.

This was my experience after being diagnosed just over 6 years ago, so I guess not much has changed. It’s very disheartening to know that I’m not worthy of any help or treatment because I’ve chosen not to conceive. I’m trying to make my peace with it and find holistic ways to ease my symptoms. I do realise that some of my symptoms are not as severe as others with PCOS and for some, medication is very necessary.

I was on the combined pill (Eloine) for a while and the anti androgenic effects were brilliant, however it affected me too much in other ways so I’ve stopped taking it. The same thing has happened with multiple different combined pills.

i usually drink peppermint tea after lunch and dinner, i've been doing this on/off for years really (long before i knew i had pcos) as i have always found it helps with my digestion and bloating.

I’ve had peppermint tea daily for years, I love it and it definitely aids with digestion and bloating as you say. However spearmint tea has been said to have anti androgenic effects and anecdotally some people have experienced a reduction in hirsutism after drinking two cups of spearmint tea a day or taking spearmint capsules. HERE is the abstract of a trial from 2010. I haven’t done further research though.

 

[ohwowsers]

Hello, I'm hoping for some advice. I suspect I have PCOS as I match a lot of symptoms and after a long wait I've an appointment but it's just for an ultrasound. Can you request a labroscopy or do you have to wait?
Thanks in advance

 

[Blond3g1rl]

I didn’t have a laparoscopy to diagnose my PCOS.

 

[ohwowsers]

I didn’t have a laparoscopy to diagnose my PCOS.

Oh ok thanks

 

[bongsandstuff]

Hello, I'm hoping for some advice. I suspect I have PCOS as I match a lot of symptoms and after a long wait I've an appointment but it's just for an ultrasound. Can you request a labroscopy or do you have to wait?
Thanks in advance

I only had blood tests and they actually didn’t show anything irregular but they put it down as PCOS I had an ultrasound for something different and it showed no presence of cysts. The whole system is useless.

 

[xbxbx]

Hello, I'm hoping for some advice. I suspect I have PCOS as I match a lot of symptoms and after a long wait I've an appointment but it's just for an ultrasound. Can you request a labroscopy or do you have to wait?
Thanks in advance

Laparoscopy is surgery, it’s not needed to diagnose PCOS. I had 3/3 typical symptoms (no/few periods, excess facial hair and cysts on ovaries). A blood test confirmed hormonal issues and a transvaginal ultrasound confirmed cysts on ovaries.

 

[ohwowsers]

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

I'll go for ultrasound and see what happens

 

[pecan]

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

I'll go for ultrasound and see what happens

When I was going through the pre-diagnosis journey, I had an external ultrasound as well as a transvaginal one and an ‘assessment of symptoms’. I can’t recall if I had blood tests, possibly. That was through the NHS in England. Not sure if the process within other healthcare systems. I know you’ve already had some answers from people but just providing another experience. Hope everything goes well at your scan.

 

[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

 

[Luce0331]

Yep I have PCOS but as far as scans can see I don’t actually have any cysts on my ovaries! But I have high androgens/irregular periods/ oil skin etc

 

[ohwowsers]

When I was going through the pre-diagnosis journey, I had an external ultrasound as well as a transvaginal one and an ‘assessment of symptoms’. I can’t recall if I had blood tests, possibly. That was through the NHS in England. Not sure if the process within other healthcare systems. I know you’ve already had some answers from people but just providing another experience. Hope everything goes well at your scan.

Thank you that helps. Can I ask if you don't mind, how uncomfortable is the transvaginal scan? Should I ask for a xanax or is that dramatics.
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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
View attachment 2165935

Thank you, that really helps. Much appreciated
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Laparoscopy is surgery, it’s not needed to diagnose PCOS. I had 3/3 typical symptoms (no/few periods, excess facial hair and cysts on ovaries). A blood test confirmed hormonal issues and a transvaginal ultrasound confirmed cysts on ovaries.

Thank you, it's the transvaginal I'm getting done so will see.

 

[pecan]

Thank you that helps. Can I ask if you don't mind, how uncomfortable is the transvaginal scan? Should I ask for a xanax or is that dramatics.

I didn’t find it too bad. Obviously it’s not a nice experience but I didn’t find it extremely uncomfortable or traumatic. I have a very difficult time getting a smear done and I experience a lot of pain when having a speculum inserted, but having the scan didn’t cause me any large amount of pain. I didn’t need any kind of sedative, I have no idea if they even offer them here. I think I was a little bit crampy for the rest of the day. However everyone has different experiences with these things. I hope it goes okay for you.