To want treatment for my pcos?

[Brighton2]

After having awful acne through my teens I was finally put on the dianette pill at 16. I had always been really hairy as well but never got diagnosed for pcos although I always suspected it. THe pill worked wonders for my acne but not the body hair sadly, but I learnt to manage that and found I could live with it. For the next 10 years I thought i had everything under control and didn’t notice that my hair was falling out at an alarming rate. I just thought everyone lost loads of hair all the time.

It wasn’t until I turned 28 that I noticed a bald patch at the front of my head just behind the hair line and realised my parting was really wide. I googled it and found that I have hair loss, and since then realised that my hairs are getting miniaturised and the folicles will eventually stop growing hair on the top of my head. Yes I am a 30 year old woman that is going bald.

Cue blood tests, crying at the doctors and being put on iron tablets. Two years later and the hair loss hasn’t stopped. I have been to the doctors 10 times and constantly get fobbed off because ‘women rarely go COMPLETELY bald’ as though ‘kinda bald’ is ok. I pushed my doctor for a scan to check for pcos, and sure enough there they were. She never believed me because I am not over weight and don’t have a hairy chest (the only part of me that isn’t hairy!) she reluctantly told me over the phone and offered me no treatment. She just said there is fertility treatment if I ever wanted a baby. I said but I’m going bald, I won’t be able to leave the house with a shiny bald head, and she said I could have counselling.

I thought this was unacceptable so I plucked up the courage to go to the doctors again to try to get treatment but was told the pill was the only treatment. So I paid for a trichologist who just gave me minoxidil which just gave me a beard frankly and didn’t do anything for my hair loss.

So I finally found out last night that I need to be referred to an endocrinologist to have any chance of getting in front of a doctor who knows about pcos. Why don’t gps refer anyone? Because of nhs money? Are they under pressure to only let the most severe cases be referred?

Every other day when I have to wash my hair I get so upset looking at my shiny scalp in the mirror and bald patches, which I cover up with L’Oréal root touch up spray. (Which really helps btw). Every day more hair falls and doesn’t come back, leaving bald areas.

So tomorrow I am going to get an appointment and when I do I am not leaving until I get referred.

And then I am going to complain and write to whoever I can to find out why women with pcos are being ignored.

I recently went off the pill as myself and my husband want to try for a baby next year. But 6 months pill free and I’m a spotty mess, my hairiness is worse and my hair loss is worse. So last week I went back on the pill as I can’t take it. Im now covered in fresh scars from cystic acne. Now I’m scared to come off to try for a baby, and also scared to pass on my awful duff pcos genes.

I read that spironalactone works well for hair loss and can be taken whilst trying to conceive. If anyone has experience of this please let me know.

Sorry for the long post. If anyone would like to chat to me about this please comment. I feel really alone and scared.

're Yasmin and dianette, they cleared up my skin beautifully too in the short term, but they are only masking the problem. Making the changes with diet is the way forward long term, especially if you are thinking of babies soon. Although im.all for them to get started!

're breakfast: I make scrambled egg and porridge in the microwave. It takes 90 seconds so is doable.or there are recipes for low carb pancakes and fruit. One is literally just a ripe banana mashed and mixed with a egg. Takes about 2 mins to cook.

My new years resolution is to get back into low carb nutritious food. I'm currently eating awfully (due to busyness) and my skin and weight are the price I'm paying for It x

Apparently my thyroid is ‘normal’ and they wouldn’t go any further than that. Maybe I’ll ask about that today - find out what my actual reading is.

@fluffymullet - thank you! Do you have porridge with no honey/sugar? What toppings do you have?

I think I’m doing a bit better for lunches, but def need to improve my snacking and dinners. It’s tough as my husband is so slim and I want to make things filling for him. But I understand that I need to have a proper think about it and try harder.

I've personally found that my GP doesn't want to treat any of my PCOS symptoms at all. I was asked if I want children, but given that I've got 3 I declined, and that was the only medical treatment they were offering. It isn't fair, just because I'm not ttc they're not interested.

OP pay for it privately. It’s only £50. I was recommendment for treatment by my private GP for a result that my NHS GP thinks is normal. While I have concerns about how this will translate during pregnancy, just within one week of taking thyroxine I have noticed a huge improvement in hair loss. (i have pcos and used to have alopecia when I was a child and diffuse hair loss ever since).

Low carb/ketogenic diet
Your diet still looks very carby (even if conventionally healthy-ish)
For breakfast have a selection of: HB eggs & LC mayo, poached eggs, creamy scrambled eggs, boiled eggs with asparagus soldiers, bacon, parma ham, smoked salmon, rocket etc.
Lunch - cheese, ham, eggs, soup made without starchy veg, simple leafy & cucumber salad, fish/meat
Dinner - portion of meat/fish, big pile of non-root veg. Subtract whatever starchy/carb food you would've had (you can still cook it for your partner) and add yet more veg Bonus points for extra butter/cream/olive oil
It's really important if you up the fat in your diet, that you minimise the starch and sugar. Those things are synergistically BAD and work in a multiplier effect with each other, causing metabolic problems, pancreatic stones, circulation issues, inflammatory conditions etc.

5 alpha reductase inhibitors - things like spearmint tea, saw palmetto etc. These prevent testosterone from being converted into its turbo charged version, which is the cause of excess body hair and androgen based hair loss (why men who are bald are paradoxically also very hairy of the body). Drugs like spirolactone work in the same way. If you are planning a pregnancy, you'd need to come of them, as being an anti androgen, it would harm a male foetus. Not sure about spearmint... the Moroccans drink gallons of the tea and don't seem to have any issue with male development disorders, but run it by a herbalist/med practitioner. I've found that spearmint tea slows down body hair regrowth a lot, and softens/reduces the spiky feeling of ingrown hairs regrowing.

Other supplements/herbs - inositol, vitamin D3, Agnus Castus, zinc, vitamin B6 (p5p), chromium, cinnamon (signposts to your own research/seeking consultation here).

Exercise - good for increasing insulin sensitivity... PCOS is a condition that's related to T2 diabetes, so anything to improve your insulin response should improve the PCOS side.

Really try to get a consultation with a private GP/specialist with expertise of treating this condition more naturopathically through diet/lifestyle/supplements etc. This is one area of medicine where there is very little headway on conventional treatments (cos women's issue 🙄 ) and much emerging evidence on a dietary/naturopathic approach, that's still rooted in solid biochemistry/endocrinology.

So just got back from the doctors... it was eventful. I told her I would like to be referred to an endocrinologist for my pcos. She looked at me as if I was nuts and said ‘what makes you think you need to be referred to an endocrinologist, that’s not what we normally do for pcos.’ I said it’s to manage my symptoms, she said what symptoms are they? I explained and said it’s the hair loss which is the worst but it’s all of these things. And she started going on about iron... I said yes it’s been checked recently and I’ve been on iron pills for 2 years and it’s not making any difference, and I know it’s to do with pcos because the hairs are miniaturised. She looked at my head and said what do you mean miniaturised? So I explained again. She said where did you get that from, I said the internet, and then she did the usual ‘well the internet can be very misleading’ and I said I have read into it expensively, on multiple medical websites as well as pcos forums, and medical studies published online. It’s a real thing and it’s hormonal which is why I need to get in front of someone who knows how to treat it. She said usually they would send me to a dermatologist for hair loss, and I said yes but I know it’s hormonal because I have all the other symptoms and I know that pcos is hormonal. I was crying at this point and very frustrated. She then said I was being aggressive and I said I don’t mean to be I’ve just been fobbed off with low iron for years when I know it’s pcos. She said ok fine I’ll just refer you to an endocrinologist if that’s what you really want. I said that is the most relevant one for pcos, and maybe gps need more training on pcos to direct patients to the right specialist to get to the source of the problem. She said well now you’ve insulted my profession and you won’t even listen to what I would’ve suggested. I said ok what would you suggest and she said she wasn’t going to say now as she had referred me. I basically explained I was sorry if I was coming across aggressive and I don’t mean to insult but I would say that if you’re saying I don’t need an endocrinologist that suggests you don’t know the most appropriate specialist for pcos. And she said she would’ve taken my blood again to check for iron. And I explained again that it hadn’t improved it in two years and considering I have pcos and miniaturised hair that seems to be the most likely route. And she just basically was really grumpy that I dared to question her knowledge.

Sorry for the long response. I really don’t think I was aggressive, I was assertive, and it seems doctors don’t like it when you know more than them. It’s not her fault - it seems the nhs don’t want to treat pcos itself which is the hormone imbalance, they only want to treat the symptoms such as irregular periods, fertility and skin.

If they would refer people to an endocrinologist surely it would yield better results for patients as it treats the source.

So basically - please everyone go and ask to be referred to an endocrinologist if that’s what you want. As I don’t think you will get very far with a dermatologist and will most likely not get referred at all and will just be told the only treatment is for fertility.

I don’t know if it will work out with the endocrinologist, but I feel a little more hopeful. I will be writing a letter to my gp to explain what I believe went wrong.

*extensively not expensively!!

@BoswelliaGoldMyrrh thank you so much, I will definitely check out all of these natural treatments. And thanks so much for the diet help. I just love carbs so much 😭 but glad that butter and olive oil is allowed!!

I did try saw palmetto once but didn’t keep it up. I will go back to it. Regarding spearmint tea - where do you buy it from as I struggle to find it?

Thanks so much everyone for the diet help.

How on earth do you guys have time to do an egg for breakfast though?! Thanks guess maybe I need to start making a batch of egg muffins on a Sunday for the week or something?

@cherries101 thank you, is that for a private endocrinologist? And please could you advise a little more about thyroxine?

What was your result that is normal on nhs but not privately? Tjanks

Hey again. When the endocrinologist I was seeing told me about the laser hair removal I got very indignant and said how can that be right?
She told me it was a funding issue -.
And that there was no point quibbling about it.
And then discharged me back to the GP.
I'd also say that diet and exercise are definitely helpful in terms of managing it. I know it worked I normalised my periods for two years plus but it did sod all for my main symptom, acne and during that time frame I had more cysts on my ovaries at the end than I did at the beginning.
So I would caution against expecting miracles through diet alone. I think why woman get referred more for the fertility issues, is that the endocrinologists actually have a clue on how to deal with it as an issue and the others that need treated are pretty much guess work and throwing drugs at you which might help but not necessarily.
Will be trying some of the supplements mentioned here come the new year (Would start now but my budget is screwed with the season of giving upon us)...

@room101 that’s awful!!

Regarding the diet thing, I totally agree and I know o need to cut down on sugar and carbs. So I will do some healthy shopping at the weekend ready for next week to start with the healthier choices. Great to hear it helped your periods. Did it help you with any other symptoms? If you don’t mind me asking, we’re you overweight? I’m a size 10 so I am not sure it will have much affect on my periods if I was to come off the pill again but hopefully it would help my other symptoms.

@brighton2 I tend to eat porridge plain, using any combination of orange zest, vanilla, cinnamon, grated apple, banana, blueberries, raspberries also nice.

As a real treat I sometime put a square of dark chocolate in which is really nice and a good chocolate fix on low carb.

Sorry you had such a difficult time at the Gp. I think is isn't well understood. I asked my go over 10 years ago about it and he said avoiding putting on weight was the answer. The only other nhs input has been for the pill and antibiotics for my acne.

I am one of the very lucky ones who had no fertility problems despite irregular long menstrual cycles ( I am fed on the mild side of pcos). Pregnancy and breastfeeding have been good for my skin but I am struggling with loosing weight.

I think the problem is that the symptoms span across different medical specialities e.g. gynae, dermatology, endo so you don't tend to get specialists in pcos

If they would refer people to an endocrinologist surely it would yield better results for patients as it treats the source.

I wish I was that easy my doctor and endocrinologist are great but I have been refused laser treatment for facial hair even tho both doctors agree it's the best option so I had to pay for it myself. The only thing you really get help with is trying for children which luckily was ok for me everything else is diet and blood check, I gave up going in the end with anything to do with pcos

OP look at Dr Jason Fung on YouTube. He's a Canadian kidney specialist and has lots of medical info about the benefits of intermittent fasting for PCOS. Well worth a look.

The Lumea is wonderful for hair removal.

@Downtheroadfirstonleft thank you I will look him up! Xx

@wishful2012 that’s the thinh, what bothers me so much is that the gps say there is no treatment, but on the nhs website it says there is. So do gps just not have the knowledge? Why won’t they refer? I imagine they are only allowed to refer the most severe cases due to cost. And even when they do refer it’s just to a gyn or derm. I want to change things - so that people with pcos aren’t told there’s no treatment when there is. And so that people get referred. Most people won’t know that they should ask for an endocrinologist. I want to change things so that gps take it more seriously and actually try to help.

Maybe I’m idealistic but I really want to try. I don’t want pcos women to suffer in silence anymore.

My gp was great referred me to the endocrinologist who put my case forward to the hospital for laser who then turned me down without even seeing me, I went private so I didn't have to go through the stress and share embarrassing problems with everyone and I was starting to become depressed/anxious

Breakfast
Dairy free scrambled egg with bacon or smoked salmon, avocado and sliced cucumber

Or

Smoothie- almond/coconut milk, fruit, cocoa nibs, chia

Lunch-
Salad with chicken

Dinner-
Zucchini noodle with meat sauce

I cut out wheat, dairy, rice, sugar
Diet tends to be low carb with a good amount of protein and healthy fat

If only your GP would read this alifehidden.com/junior-doctor-training/
Glad you got your referal but sorry it was so upsetting

@daisydreaming thank you for sharing that article. So well written.

That’s exactly how I feel - they don’t listen to the symptoms I have and treatment I’ve already had that didn’t work. They just want to do endless blood tests and say it’s all normal.

Brighton
I get the spearmint tea either from my health food shop in cellophane bags, or buy it loose from the herbalist. Failing that, I get the Pukka triple mint teabags from the supermarket which contain spearmint.

Re breakfast, it just takes literally a couple of minutes to crack a couple of eggs into a pyrex jug, add a splodge of cream, microwave it whisking it every 30 seconds. Or you can hard boil a batch of eggs in advance and keep in the fridge. Full fat authentic Greek yoghurt (Aldi do a version of Fage for £1.39 ish) with double cream & cinnamon is also nice for brekkie.

Have you also looked into the research on CoQ10 and PCOS? onlinelibrary.wiley.com/doi/10.1111/cen.13288/full

Eurgh bloody PCOS, literally the only professionals who seem to know more about it than anyone else in my experience are my fertility and gynecologist specialist.

Currently 37, diagnosed at 24 and to this day only ever offered the pill or metformin. Been referred to the endocrinologist - be prepared for them not to be the answer to all your prayers. They will confirm hormone imbalances, suggest ways to manage symptoms but on the whole they were totally useless for me.

I paid to see a fertility specialist privately after struggling to conceive and was told to stop the metformin as the side effects were horrendous and it was not actually working. The specialist then told me about Inofolic. It is a natural substance that supposedly does the same as Metformin without the side effects. Downside is that you have to pay for it yourself, however after 3 months of taking it I got pregnant with my daughter.

That was 4 years ago, used it again for 3 months at the beginning of 2018 and I am now 37 weeks pregnant.

I have found that after pregnancy my PCOS is less severe and symptoms are much easier to manage. They will never go away but I am much happier.

Hope you really do get the help that you need :)

@plopchops thank you that is so good to know! Yes I am prepared for the endocrinologist to not help 😒 but I’m hopeful that it’s one step further than I normally get at least. This hair loss really gets me down, particularly on the days when I wash my hair (like tonight) and have to go through to process of styling it and putting brown coloured spray on my scalp (fun).

Inofolic- is that mostly for fertility?

Good to hear regarding symptoms, what were yours like before baby?

If I don’t get anywhere this time I might need to look into going private, it’s just not very affordable for me 😬

I’ve now decided to go sugar free in the new year, which will hopefully help me cut down for life after that.