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.

I don't think it is unreasonable to want treatment forPCOS. My symptoms are nowhere near as bad as yours but as my face gets hairier I do get upset that I'm not really offered any treatment that will help with this, the pill doesn't make much difference to my facial hair sadly.

Try the forum Verity, it’s for people with PCOS. It’s awful that people are expected to just live with symptoms without it being looked into. Although I understand you being very upset at losing their hair (who wouldn’t be), life would carry on as normal with a shiny bald head as you put it. I know it doesn’t feel like that when the shower or your pillow is covered in hair though

Firmly request a referral and if you don’t get one change doctors.

PCOS is a tricky problem - I assume you’ve already sorted out your diet so it’s LCHF etc which dramatically sorted out the delightful beard I have most of the time?

If you’re a healthy weight, eating LCHF and are still symptomatic then you definitely need a referral.

It’s also not a given you’ll have fertility issues. I waited until 34 and 39 and got pregnant month one with both in spite of being about as far from a healthy weight you can be.

Good luck and stand your ground.

Also, my PCOS improved a great deal after having my child - skin is perfect now - better at 40 than in my 20s

I take Metformin for my PCOS, mainly because my periods were so irregular (maybe 3 or 4 a year). it seemed to make them more regular, but I'm now 50 and very probably approaching the menopause - no idea if I'm suppose to continue with it?! I've put off going to the GP with it as they haven't got a clue, and are really confused as to why I take it, it was prescribed by the consultant at the hospital.

Brighton2 I also have PCOS and am very hairy, but have managed to have children. It's never occured to me to ask for treatment, even though facial hair causes me massive stress and upset. (It's unmanageable tbh). for you, it sounds incredibly tough.

Put your foot down - I think you're right to insist on a referral after putting up with this for 10 years. You need a specialist.

@daisydreaming thank you. I actually found Verity today, which is so great! It’s good to find that you’re not alone.

The hair loss thing - Yes the world will carry on, but for me life would stop. I can’t imagine going out with a balding shiny head as a woman. It’s so humiliating, embarrassing and mortifying. If I wore a wig everyone would be able to tell. The thought of going bald feels so unfeminine.

When I really start thinking about life with a balding head, I feel almost suicidal. I can’t imagine going out looking like that or even letting my husband looking at me. I honestly feel like there would be no point in living. Last night I got so down about it because I thought about how bad it will be in 5 or 10years time. I don’t want to be one of those balding women you see on the train or in the street. I just want to look like a normal woman.

I hope that makes sense - it’s very hard to explain. My husband thinks it’s not noticable at the moment and it will all work out, but it’s very hard for people without hair loss to understand how it feels.

@merryoldgoat that is good to know regarding your skin improving after having a child, and great to know you have had a child!

Thank you for the encouragement, I will be sure to come back here once I’ve been to the doctors.

So sorry to hear you’re going through a tough time. I haven’t experienced bald spots however my hirsutism is severe and I’ve had bad acne since 12 I have been given next to no treatment or guidance from my GP for PCOS other than “eat less sugar” and “try laser hair removal” When I already follow a strict LC diet, and ironically my GP was overweight whereas I’m incredibly lean. Because I’m not ttc I was fobbed off too I haven’t gone back to my GP as I feel like they don’t seem to care and see me as a time waster

Hi @namechangerami thank you. I will hopefully be brave enough this time to not leave the room without what I need.

I think you should definitely try to get treatment for your hair if you want to.

So often us women are just made to be quiet and not inconvenience anyone. I also find it really offensive that they only want to help you have a baby, reinforcing the notion that society thinks your only value is to be a baby making machine.

I hate how many people view pcos symptoms as trivial though, even studies have shown pcos does take a toll on our mental health (we’re significantly more likely to suffer from anxiety and depression than average)

I sympathise as a pcos sufferer myself. My hair is thinning too and I've had the acne and excess body hair too. I don't know if the docs will help alot. Another thing to try is the arnica Facebook group. They have lots of good homeopathic advice on there. Might be worth a try. Also when pregnant my hair grew in more and you don't lose hair when you are pregnant so maybe this is a good time for you to try and conceive ?

@grapetree you should definitely persevere for a referral. We can persevere together!

Us women are constantly fobbed off. Made to feel like we’re a nuisance and bothering them about trivial things.

Totally agree regarding how it affects your wellbeing. Us women are particularly expected to look perfect - thin, smooth, hair free but also like we ‘woke up like this’ Natural. I constantly have men glaring at me on the train for putting make up on. Like they want women to look perfect but not see how the ‘perfection’ is created with make up.

I had sort of forgotten how awful it is to have acne until I came off the pill and got big cystic ones that were impossible to cover up. I was literally thinking - I cannot go to work today, everyone will be staring at these craters.

With my hairiness, spots, potential fertility issues, when I have my down moments I seriously wonder how I can carry on. I tell myself I was made wrong and should never have been born as I’m not a proper woman. And thatmy thinning hair is a sign for men telling them not to breed with me (as thick healthy hair is a sign of fertility).

Depressing but true! I’m v lucky to have a supportive husband who puts up with my ‘it’s not fair’ rants.

Sorry just 're read your post and it said you have been trying to conceive. I think you should come off the pill then again and try other alternatives for acne as the pill does mess with your hormones too and you need to get your natural state more balanced. I think see a homeopath about your condition as they can often help x

I think about my appearance 24 7. From the moment I wake up to when I fall asleep. I think about how my hair is looking, if any bald bits are showing, if my scalp is shining. I’ve learnt exactly what lighting is good or bad. When it’s bad I feel mortified and want to get out of the room. When it’s windy I worry, when it rains I have to have an umbrella as when it gets wet it sticks together and shows scalp. And that’s before I even get started on managing my body and facial hair and spots.

It’s truly exhausting. And I’m a low maintenance gal. I’m not massively into make up or beauty. If I didn’t have these issues I would be the type to just roll out of bed and go out. So I really detest spending time covering everything up. Sigh

Hi @oneweekleft thank you. I will check out that group. Do you have any treatment for your hair thinning?

To me my hair is the final straw, the why me? When i’d come to terms with all my other symptoms that I deal with. Going bald is so hard to deal with because it’s mostly concentrated on the top of the head. If it was at the back or sides I could just cover it with top hair or use extensions.

Hopefully I will be able to get treated by an endocrinologist. And hopefully spironalactone will work for me in terms of hair loss and acne and then I can come off the pill. That is if they will prescribe me with it. It is on the nhs website so fingers crossed.

Regarding trying to conceive. yes you are right. I’m just too scared to come off the pill until I have an alternative such as spironalactone. That’s also because I’m scared about acne. They really were painful and just would not clear up. Just kept refilling with pus (so gross)!!!

Hopefully by the end of next year I will have a solution and will be pregnant!!!

Brighton I understand why it would feel the end of your life but it really wouldn’t be. It’s amazing the way you adjust to things you thought would be impossible to adjust to. I have a friend and I thought she had beautiful hair (as she does). I had no idea she lost her hair in late teens/early 20’s. Not a clue, I was surprised when she told me it was a wig! I now sometimes see her with a wig, sometimes without, I honestly don’t think anything of it. Cross that bridge when you come to it but I promise you, you would get used to it and live again.

Time to get help. Also have you tried the Philips lumea? I have found it’s started to help my facial hair when I ignored the instructions by now using the facial attachment and blasting it every other day as every X amount of weeks didn’t help

Oh and hair loss stops during pregnancy so you never know a baby might help that too

What is your diet like OP? Do you manage to eat lchf for long enough periods to assess the improvement. Are you taking any supplements? Vitamin D, magnesium etc?

@daisydreaming thank you. I haven’t looked into the Lumea but I will now!

@dianat1969 hi, sorry what is lchf?

I have quite a good diet, organic meat, lots of veg and a bit of rice and potatoes. I cook from scratch every night. Must admit though when I feel down I do have a little binge - like eat 4 biscuits in a row or something.

Supplements wise - I take ferrous funerarate, zinc, vit d and calcium and b12. X thanks

LCHF is 'low carb high fat'. You could google Diet Doctor and Keto diet to look into into the science. I'm not an expert, so hopefully someone who knows more will jump in. As I understand it, insulin has an effect on hormones. Eating LCHF or keto reduces and stabilises insulin production. I don't have PCOS, but I have no PMT, light periods and very even moods when I eat LCHF. So I've seen first hand what a difference it makes.
The low carb bootcamp thread on MN follows LCHF. There are recipes and tips on there.

LCHF - I so wish I could eat this diet I had gallbladder out and ever since can’t tolerate fat at all! So my facial hair sadly is much worse than ever I grow a better beard than most men - paid for 36 sessions of laser works temp but hormones change and it comes flooding back!

I’m lost at what to do
I see professor Conway at private hospital harle street - in London!
Costs me 250 to have consultation but he tells GP to do bloods and medication

I’m now trying spirolactin
Metaforim gives me severe stomach issues!

Ah ok, I hadn’t heard of this diet. Does it really work?

I just try to have a Mediterranean diet, but I must admit I find it hard to stay away from sugar sometimes. Yesterday I had quite a few biscuits because there were some out at work (hate it when that happens)

@housingcraze oh that’s awful, have you not tried just getting referred on nhs?

Are you on the pill?

Let me know how spironalactone goes for you. Hope you see some results