PCOS

[knivesnflowers]

@boomska i have similar symptoms to you and got a pcos diagnosis, you can be diagnosed without a scan if you meet the other two criteria! my regular bloods include gonadotrophin, testosterone, androgens, SHBG and hba1c (blood sugar) for reference. i've been to see both gynae and endocrinology so could be one or both of those - good luck!! i'd also suggest asking them to check your thyroid as they can be linked!

 

[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]

Sympathy for you! I also felt like this when I came off the pill. It got so bad that after about 5 months I got the implant put back in which has made a big improvement. Hope you feel better soon!

I’m so sorry you’re having such a rough time. I went through this too when I came off the pill about 5 months ago. All of my PCOS symptoms have now come back with a vengeance, functioning is hard and it’s shit! I’ve gone around and around in circles over the years going on the pill to mask symptoms, then getting undesirable effects from the pill so coming off it, then going back to PCOS (and PMDD) ruining my life and feeling like it was a mistake to come off. It’s like my own body and mind gaslight me into always thinking I’ve made the wrong choice! I really hope you’re feeling better soon! Never apologise for needing to vent about it, especially if it helps just to get it all out there.

Thank you ladies I feel a bit better today - slightly low mood but it is a Monday after all! I was so close to asking my GP to renew my prescription but I think I might actually see how it goes without. At least I know the option is there to go back on the pill if it really does become too much.

I have hypothyroidism too and it’s so difficult trying to understand my hormones and what side effect is related to which medical issue. Wonder what it’s like to be healthy with no problems eh

 

[CharlieTYBT]

The doctors really don’t have a clue about pcos or how to treat it and often come out with really bad advice, each doctor I’ve spoken to has told me something completely different. I am down the fertility route with my gynaecologist for treatment as we have been trying for a while and he has recommended clomid to help me ovulate which is meant to be very effective. If that doesn’t work there are lots of other options before IVF is even considered. I also know people with pcos who have got pregnant with no help and has come as a shock (as they were told it would be difficult). I know it’s easier said than done but try not to worry there is plenty of help out there if it comes to that

Thanks for reassuring me, that's my experience when it comes to women's health - they have no clue. I'm sorry to hear you're having problems. I wish you the best of luck and hope everything works out for you x

 

[CrimsonCountess]

Have you had any blood tests done? Despite the name, you don't actually have to have polycystic ovaries to have pcos so you may have it. I believe you can be diagnosed if you have 2 out of the 3 main symptoms, so irregular periods, excess androgens and polycystic ovaries

 

[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

 

[!noseyparker!]

Thank you so much for your advice! I was diagnosed based on my testosterone level over the phone by a nurse practioner. My BMI is just slightly overweight but BMIs

I've come across this thread as I think it's very likely I have PCOS (I've got 2 out of the 3 main symptoms and I am waiting for my ultrasound. It's honestly shocked me so much to the point I was crying for most of today). I've been reading everyone's posts, and wanted to say that even though I don't have a lot of advice or suggestions for you, you should feel such a sense of strength to overcome a rough relationship with food and be in a place where you are eating healthily and being emotionally gentler to yourself - it's a huge thing! The only suggestion that comes to my mind is making sure you have someone you can talk to (like a therapist or a person you feel completely at ease with and trust). I do relate to having a good/bad relationship with food and constantly being told to lose weight which doesn't help. I'm aware that I am big, but being told I am big does not help me - or many people - lose weight. I've even told people/doctors in the past how unhelpful they are being by saying that and not following up with practical advice or resources I can use. I wish more healthcare professionals handled this topic with greater compassion and sensitivity because it's so clear that everyone with PCOS is doing their best every single day. I want to give you - and everyone - a really big hug. This is a very tough thing to experience and live with

Don't have much advice unfortunately, but wanted to say I have had disordered eating in the past and being told losing weight will help when I already eat very careful and I'm medically a 'healthy weight' was very distressing. Not to say ignore your doctor, but I think its very unhelpful if they tell you to lose weight but don't talk to your about your lifestyle/history first for a better understanding of your situation! Sometimes it feels like they just give you a checklist of things that help 'most' people.

Thank you both for your kind words! I was diagnosed over the phone based on one test which, given reading here and from friends who have struggled to get a diagnosis, seems premature! So I don't know if I "belong" here but given the test was done to check if I should have any issues ttc it has been stressful! They didn't suggest further tests so maybe it was the "lose weight as default" but it's interesting that when I had the in person check up, they didn't mention my weight (I'm pretty average in terms of weight) until that pesky testosterone test.

But definitely just writing this out and reading your, and others, experience really helped!

The biggest shift in terms of exercise/food I worked through was "I eat what I like" and I exercise because it helps me feel tired/ sleepy/ relaxed NOT to "lose weight/ change my body".

I am lucky to have a supportive partner and will talk more to my therapist about it next time I speak with them! Thanks for the advice!

 

[Milliehaha123]

I have what people generally refer to as lean pcos, diagnosed by blood test and an internal ultrasound.
It is very frustrating as it took SO long for me to get a diagnosis, they didn't even want to do the tests for years & my doctor has two daughters with classic pcos symptoms and she clearly thinks mine isn't as bad or doesn't need to be taken seriously and offered no way to treat/manage it.
It is really disheartening particularly as it is having a huge impact on ttc for me. I'm looking to switch doctors actually so hopefully that helps, it was mention by another nurse in the practice that fertility appointments are somewhat fast tracked and I could get referred at 6 months rather than a full year of trying so I might start thinking about taking that up soon.

This is really frustrating! I had the same situation with one of my doctors - she just wouldn't take it seriously at all and said that everything was manageable with more exercise and cutting down on sugar. It made me feel really upset particularly as my mum had fertility issues and I always worried something could be more seriously wrong.
I decided to change doctors and I had such a different experience (with a male doctor funnily enough) who listened to me and was particularly concerned when I said I sometimes experience ovarian pain during ovulation. He referred me straight away - so it might be worth seeing if you can see someone else as I do think doctors are all so different and have their own views on what should be referred v what definitely shouldn't.

 

[Lizzie Mintdrop]

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?

Yes, it was perimenopause that caused it for me

 

[Lizzie Mintdrop]

Does anyone have any advice for hair loss? My hair is starting to feel a little thin around the scalp. I'm researching vitamins and hair wraps to sleep in and silk pillow cases, but so much different advice and options of them all it's hard to know where to start!

I don't suffer with hairloss but I have heard brewer's yeast is good for prevention. I do take sea kelp and gave done for over a year and my hair is in great condition

 

[bbbbbbb123]

Anyone really struggle with weight loss? Has your doctor been able to provide any advice/support?
feel like I’m doing all the right things but not seeing results

My doctor offered me an appointment with a dietician but I’ve lost weight in the past so I said no. I just count calories and try to eat more high protein stuff.. I try to do 10k steps a day and it works for me, it’s just a bit slow

 

[ThisIsMyDragName]

No I totally agree with you and I think most people in this thread would too! It’s always the same with women’s healthcare. I’m sorry you’ve had a rough time of it with your mental health, I empathise and it’s definitely important to prioritise that. Regarding losing weight, it can help but won’t necessarily lead to big improvements. I am well within my ‘healthy’ weight range but I still have excessive body hair, hair loss from my head, terrible skin, irregular cycle, all the fun stuff. Obviously everyone has their own journey, sometimes things improve and other times they don’t. Again women’s weight is something else that every GP will use as a reason for things. Of course I advocate for being the healthiest version of yourself but don’t let anyone shame you into losing weight. Do it because it’s what you want for yourself. I really wish you all the best in receiving treatment that suits you and on your TTC journey when you feel it’s the right time again.

Thank you, this was such a lovely and supportive and helpful response. I really appreciate it

 

[Donald23]

I was told by a hormonal coach to stay away from
High intensity workouts and any weighted workouts should only be 30 minutes long

Oh I’ve never heard the time thing! That’s interesting and I’ll be taking that on board for my workouts going forward
---

Wow I never knew this! Thanks for the tip

It’s not something the doctors seem to say. Everyone bangs on about food and losing weight but nothing about the best ways to do it

 

[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.

 

[CakedCat]

I’ve decided to come off my contraceptive so I can get my fertility levels checked and I’m excited and anxious- I’ve been on it 16 years, on the mini pill and without a period for the past 7 or so and when I went on as a teen it was because of having horrific periods. Hopefully easier now, but you hear it can take absolutely months to start back up.
I’m not trying to conceive but after spending all this time thinking it just wasn’t possible for me, I just need to see for sure.
Anyone got any tips coming off and getting them to start again sooner or is it more of a wait and see thing?

It's very much wait and see but....
Eat fats (nuts, seeds, fish, dark chocolate etc), limit caffeine, try to minimise stress and prioritise sleep. I also found the 'take advice as if trying to conceive' tips helped even though not trying to conceive as essentially, it's the same point you want to get to.

 

[bbbbbbb123]

I’ve not used biotin personally but on a different thread several girls recommended it for hair loss xx

 

[Blond3g1rl]

I found out 10 years ago when I was 18/19. I can’t remember what triggered my doctor to send me for tests but it was probably my cystic acne. I’ve received no help over those 10 years, it’s really crap. I was told by a doctor last year when I phoned up about something else that I need to have my blood tests done and I was like “sorry blood tests for what?” and she told me with PCOS you’re supposed to have your bloods done every year. First I’d heard of it And I still don’t get called to get them done.

I’ve never had blood tests for PCOS. Didn’t even know this was a thing.

 

[Luce0331]

Well done on losing 4 stone that’s a huge achievement!!
I think the increased cardio might be where you’re going wrong running and biking increases adrenaline which is bad for Pcos. You might be better cutting back on cardio and doing more weights.
I’ve found a mixture of weights and steady paced walks have helped me

Wow I never knew this! Thanks for the tip

 

[SmudgeTheCat]

Hi all,

I gained a lot of weight which I suspect is from pcos as I always very petite and put it on quite quickly. Has anyone successfully lost pcos weight? Tia x

 

[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