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.

Sounds as though your hair loss is the thing you're most worried about - your GP may do a private prescription for regaine but probably best to see a dermatologist privately ( NHS wait likely to be very long )

When I was on spirolactane, I was told most definitively do not get pregnant.
I am on Marvelon for the acne but without a secondary acne treatment, I still get acne...
When I was initially diagnosed, I went on a low gi diet, managed to get my periods regulatex to a 28 day cycle through this but it madr no difference to the acne whatsoever. At the moment I have about eight small spots on the left side of my face and two massive ones on my chin line on the right side of my face. Really annoying.
Oh and under my ccg, if I was a man who felt he was a woman, I would be entitled to six free sessions of laser hair removal. As a woman with a hormonal condition, I am entitled to nada. And they say the need for feminism is dead...

I'm so sorry you've been so majorly fobbed off. If 1 in 10 men suffered from an equivalent condition I have w feeling they'd be treated better.
My PCOS definitely is weight related, my symptoms increase and decrease with my waistline, so I understand the GPS reluctance to treat me with anything other than birth control and referrals to the dietitian. But you're PCOS is not weight related, it's your endocrine system misfiring. A bit like the difference between diabetes type one and two. If someone went with type 2 diabetes they might first be offered nutrition advice as an initial treatment, someone with type one would be offered a more medical route immediately.
PCOS increases our risks of certain cancers and heart disease, depression and anxiety as well as all those lovely side-effects of having too much testosterone. It's not just infertility, although that is devastating enough. It's a scandal how PCOS and endometriosis are treated as women's problems and brushed under the rug.

I really hope the endocrinologist can offer you some answers and treatment. 💐

HousingProblems, Slow Release Metformin is , or should be, prescribed if the normal kind gives you severe stomach problems.

Room101 that is awful regarding laser hair removal. Have you raised this inequality? Maybe you could say it’s affecting your mental health? (Which it obviously is)

I have heard that about spironalactone, but this isn’t mentioned on the nhs website (not that that’s confirmation of anything) but I also read that some doctors say that because of a study into pregnant rats where it affected testosterone on the foetus. But apparently they were given v high doses which would never be given to a human. I’ve seen people say it’s totally fine and they now have healthy children, or some say they just stopped once they found out they were expecting.

It’s something I want to ask if I ever get referred!

@sharedlife totally agree!! If I manage to get somewhere with this I am going to start campaigning for change in my area and then if successful hopefully pass it on to people to change their area.

@bengalcat - thank you, I tried regaine (minoxidil) for over 6 months and it did nothing. It just was an inconvenience, made my hair greasy and itchy and gave me long cheek hairs (despite never letting it drip into my face) so I gave up. I now believe treatment needs to come from the inside xx

Hi, I have PCOS, fewer symptoms than you but did notice hair thinning. Have you looked into taking Saw Palmetto? Its a supplement that naturally reduces androgens / male hormones and so stops testosterone from turning into DHT (which causes the male pattern hair loss seen in women with PCOS). If you do some research you should be able to find out about it.

Just to update you all - I have s doctors appointment at 3.50 this afternoon. Fingers crossed. I am definitely not leaving the room until I get referred! Will keep you updated. Thanks for all your help so far

I was diagnosed with PCOS at 18 and told to come back when I wanted a baby, no treatment offered.. lots of high cardio exercise, low GI strict diet and dianette helped my symptoms to an extent until I was told I shouldn't have been on dianette for five years, I was shifted to Yasmin. Nothing has stopped the hairiness, hair removal is a significant daily chore. I was put on Metformin during pregnancy as I developed gestational diabetes, that didn't help either but it was lowest dose (it works well for some women to manage PCOS and is safe of you fall pregnant, with asking about) and I controlled everything else with diet, my sugars and baby's were perfect following birth. It also only took me just over a month to fall pregnant, which my Dr credited to my diet and lifestyle choices. I've also found excellent support and advice on a forum called SoulCysters. I'm typing this holding the baby I thought I'd struggle to have, don't lose hope OP.

Your experience is very similar to mine, but I am about 15yrs older than you.

Absolutely yes press the GP for a refferal but also look carefully at your diet and exercise. For me this was a game changer.

Low GI diet, high protein, exercise, iron and B vits. Verity website is a really good source of information.

Good luck! X

Good luck at the doctors

I've been using a supplement called ionsitol for 6 months. It has helped my skin ( in conjinction) with low carb diet and regulated my periods. Ive noticed changes around ovulation too which make me think it is boosting my fertility ( 2 babies and done for me so we will never know!)

PCOS is a metabolic problem. Treatments in the past tended to focus on symptom management e.g. hair removal, acne creams, or using the pill to block androgens. Try and treat the cause and the symptoms should improve. It's a tricky condition though with a big spectrum of severity. Good luck x

I have pcos and was diagnosed in my early 20s when I went to the doctors repeatedly for severe acne and hirsiutism. Fobbed off many, many times and given every topical cream/gel, antibiotics and pill they had. Nothing worked. Eventually I saw a lovely locum GP who referred me to a dermatologist. My cystic acne would would worsen certain times in the month so i began a photo diary of my face. I showed them to the dermatologist as typical, my face had cleared before appointment. She was horrified and put me straight away on Roaccutane. I took the tablets for a few months and ten years on, the acne has never come back. Best decision I ever made.

For PCOS, I initially had a BT which confirmed I had the condition. I was referred to Gynae where the consultant examined my hirsitism problem, I had an ultrasound scan which confirmed cysts and then was offered a dye test to see if I had any blockages down there. I declined.

For my hirsutism I have had laser hair removal on face and neck for years. There has been an improvement and many technicians offer discount if you show evidence of having PCOS

I second saw palmetto for the hairloss. I took them for a few months and noticed a subtle improvement. The main change came when I fell pregnant (first month of trying), and hairloss stopped. Since the I have bouts of falling hair but nothing severe. I am careful not to aggravate hairloss by not using conditioner anymore, using a mild volumising shampoo, not washing my hair too often (2x a week). I have regular head massage (blood circulation helps hair grow) using traditional Indian hair oils recommeded by a friend.

Good luck OP.

Hi 👋
I haven’t been on medication for PCOS, but I have found diet helps a lot.
When I went Paleo my period became regular for the first time in my life, my skin cleared and my periods weren’t painful.
If you are desperate it is worth trying

Thanks everyone regarding diet. I am intrigued as i believe I have a relatively healthy diet but sometimes slip into eating lots of cake and biscuits when I feel down. Also I sometimes find it hard to find healthy breakfast and snack options.

Would any of you mind sharing what you eat in a typical day?

I have muesli for breakfast, cereal bar as a snack, banana, then a lentil salad for lunch, and for dinner it could be anything from fish and potatoes to pasta bake or curry. I try to keep my portions small and have less carbs.

On a bad day you will also see me eating ice cream, chocolate and biscuits 😬😬😬

Oh and I do also eat other fruit like a pear or orange, and will have at least 1 green veg with dinner.

Get a full thyroid panel, go to a private GP and pay for it if needed, PCOS and Alopecia offen go hand in hand with thyroid issues.

Often if you treat the thyroid all of the other conditions improve.

I struggle with staying low carb for long periods but:

Breakfast: scrambled eggs and spinach or small amount of porridge with linseed and ground almonds

Lunch: salad and quiche or soup

Dinner: chicken/fish/veg. Replace potato with extra her, replace rice with cauliflower rice, pasta with courgetti.

It's not easy but I managed a few months with low low carb and felt better for it.

Don't forget exercise to x

Hi OP, you may find that changing the diet will improve a lot of your symptoms. I thought my diet was good, but when my PT looked at it (as I was exercising but not losing any weight), she straight away said she knew where I was going wrong. I actually had to send her pictures if any food or drink I was having for several months.

From the things you mention, you still eat too much sugar/carbs. Refined carbs are evil for PCOS sufferers, avoid at any cost. But also go easy on fruit (natural sugars), milk products (natural sugars) any red, yellow, sweet tasting vegetables.

Eggs unlimited, good unprocessed proteins, lots of water, regular exercise.

It may take a good while to balance your diet as we are all addicted to sugar to a various degree. But do research LCHF, keto or paleo. What you are eating is not low-carb.

Hi OP, I had no signs of PCOS until 17, when I started developing a horrible acne on my forehead. It spread on my cheeks an chin as well, and I also started to get hair on my upper lip and evrywhere on my body.

I saw different doctors as I thought I had PCOS and was always told it wasn't possible as I'm not overweight. Anyway, started taking vitamin D supplement (was deficient but nobody ever flagged it), more exercise, reducing sugars and my situation has slightly improved. I have a big problem with thinning hair and balding patch on top of my forehead and I believe I have lost more or less 25% of my hair in the last 4-5 years.

Viviscal has helped a bit, but as soon as they are a tiny bit greasy you can see the scalp. Was thinking to try hair fibers are some point.

I've been on Metformin for 15 years now for PCOS, and my hormone levels normalised a lot since starting it.

I agree LCHF diet is great for symptoms, although for me it tends to result in an eating disorder relapse every time, and I end up deciding that the symptoms are not actually worse than binge eating and bulimia... :(

@peggysuehadababy sounds like you do have pcos and you have been fobbed off. I have just started taking vitamin D so I hope that helps. If you want to get help with the acne I can highly recommend Yasmin or dianette. They literally changed my life

I know I definitely need to do better. Food is literally my favourite thing, I love cooking. I’m slim but I feel like my belly has been a bit podgy for a few years.

I do eat brown rice and pasta but agree I do eat too many carbs and sugar. I need more greens.

Does anyone have any ideas on breakfasts if you don’t have time to do an egg before work? That’s what I struggle with a lot.

Thanks so much