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Advice on PCOS treatment in the UK please

(32 Posts)
Almondmilk Sun 12-Mar-17 15:53:00

Hello all,
I have discovered that I have PCOS around two months ago. I stopped the pill in May and realised that I had no periods. Last appointment with the gynaecologist was around one month ago. She said I should wait 6 more months before I start a treatment to help me ovulate. This was in Scandinavia and I am now in the UK. I am 34 and I think it's starting to become urgent. Anyone can tell me how to proceed here to get help conceiving? I'm in South London.
Thanks!!

motherchuckinhen16 Mon 13-Mar-17 11:39:13

Start taking Inofolic as soon as possible. Follow a sugar free diet as much as possible. Reflexology also helps go to a reflexologist who specializes in fertility and maternity. All this worked for me. Now 16 weeks pregnant. It took over 6 years to get my diagnosis of polycystic ovaries. Once diagnosed and changes made to diet etc I had first normal cycle within 2 months and was pregnant within 3 months. Good luck.

Almondmilk Mon 13-Mar-17 14:11:36

hi motherchuckinhen16 and thanks.
I am not so far from having a sugar free diet. Still have some cheat treats though. I avoid industrial food. I try to avoid wheat and dairy as much as possible without driving me nuts. So far no periods...maybe it will take longer. Maybe I have to stop the cheat treats? Happens maybe once a week...I am going to start exercising again although I have a normal weight. If you have more tips I listen to yousmile
Oh and I take all the supplements and fish oil...

icy121 Tue 14-Mar-17 22:25:51

Honestly? Throw money at it. Seriously. It will save you SO much time if you can afford it go and see a doctor privately. The Surrey Park Clinic in Guildford is very good (35 min train from Waterloo & then a 5 min taxi) or book in with a fertility consultant at another private hospital. Get a full suite of tests done, bloods, scans, the lot. Expect to pay the best part of £1k at this stage.

At the same time go and see your GP and explain it all to them, tell them you want to start trying, worried about your age & lack of periods. This way you will hopefully get registered in the system for fertility treatment if you need it.

Do you have health insurance? If so, if you require ovarian drilling (keyhole surgery to stimulate ovaries and remove any cysts) that may be covered by bupa if you can get the private doc to say it's PCOS related and not fertility. I think many docs are wise to it.

Almondmilk Tue 14-Mar-17 23:18:22

icy121 thanks a lot for the heads up and tips.
It does seem expensive for me to go private. I wonder if I should just travel back to my previous country or homeland for that...I have started the process there. Well, they diagnosed me at least.
Oh dear I'd be scared to go through ovarian drilling...have you done it? :'(

Lulabell1979 Tue 14-Mar-17 23:50:47

There is a treatment called norithisterone they can give to kick start periods followed by clomid for ovulation. You can get this from GP. Try not to worry and PCOS can come and go - does for me.

Almondmilk Wed 15-Mar-17 11:20:57

Lulabell1979 Thanks! I think I received the equivalent to norithisterone (provera) which I take every 3 months. I didn't know gp can deliver clomid. I guess I have to do tests before unless they trust me if I say I was tested for pcos..? Not worry is a good point, hard to do though!

merinl25 Wed 15-Mar-17 14:44:42

Yes definately. Best route is to take natural supplements that will regulate your hormones. Start taking progesterone cream from half way of cycle( progesterone cream also protects your body from miscarriage), wild yam root, vitex, dong guai supplements which you can buy on ebay or amazon.

icy121 Wed 15-Mar-17 15:40:59

Sorry but I really don't think recommending alternative/ "natural" options is helpful. The reality is that alternative therapies are classified as alternative because there is no proven, systematic medical efficacy. People who "swear by" acupuncture or reflexology are just as likely to have got pregnant naturally. Other than following the correct diet (low sugar) and being the right weight there's not a lot else that someone with PCOS can do for themselves.

I took clinic for 8 cycles - I did ovulate but didn't fall pregnant. I have had ovarian drilling, and endometriosis removal and a tube unblocked at the same time. It was a keyhole operation done under a general anaesthetic and was used to remove cysts and promote ovulation. In my case it didn't work, but for PCOS sufferers it should be the first port of call after clomid has failed and before IVF. It isn't often, though as it's about £3,500 and the NHS doesn't have the funding.

Following drilling, I then went on to have IVF which ultimately did work in so far as I'm pregnant now. However because I have PCOS my ovaries were overstimulated and I had to freeze the whole cycle and have a FET a few months later.

It's been a 3 year journey for me, and I'm just lucky I started it aged 27. If I was going via NHS I would still definitely be on the treatment treadmill, wouldn't have had the endo removed & that might have impacted on the ivf/fet.

It is expensive. I've been lucky and have spent about £13k to get to this point. Many spend many times this amount with no success. I'm also lucky in that i have the income/savings to support the cost without resorting to credit cards.

It's up to you of course and if you have the means or not, but I would absolutely find a good medical consultant (not Zita West!!!) and go private early to get to the bottom of potential problems rather than waste months/years on trial and error. Infertility is a disease. You wouldn't naturally try to cure cancer, you'd go to the shit-hottest oncologist you could afford.

icy121 Wed 15-Mar-17 15:41:31

Clomid not clinic

merinl25 Fri 17-Mar-17 13:48:22

Yes, the natural supplements do work, especially natural progesterone. They regulated my ovulation and prevented miscarriage.That's why I strongly encourage women to go natural way that work with their bodies instead of drugging themselves with artificial hormones and chemicals that can have unknown side effects including cancer.

icy121 Fri 17-Mar-17 21:32:12

If natural supplements had any systematic proven medical efficacy (rather than anecdotal "it worked for me") then don't you think doctors/the NHS would prescribe that instead of expensive treatments?

You're very lucky your cycles regulated and you avoided miscarriage. However please bear in mind that correlation isn't causation, and your anecdote is in no way proof that the herbs you recommend work.

Further, advising people to buy herbs online and take them is really unhelpful and maybe dangerous. Herbs are notoriously unregulated, so how will anyone know where they came from, what the actual dosage is etc?

This is why I recommend seeing a medical professional. Someone who can run a full suite it blood tests, carry out scans and if required come up with a proper treatment plan. The GP and NHS can do/provide all of this, but it is a long, slow process. If you have the money and your fertility is a priority to you, I'd always recommend seeing a consultant gynaecologist in the first instance. There are women on this forum who can give recommendations in central London or further afield.

Or, rather than get a detailed overview carried out by a medical expert, just order a load of random supplements sugar pills? off Amazon on the day so of an anonymous poster, and hope for the best 🙄

bananafish81 Fri 17-Mar-17 21:51:04

Progesterone has no mechanism for regulating ovulation

Ovulation is due to FSH production in the pituitary in the follicular phase

Progesterone is only produced after ovulation. It doesn't cause ovulation. Only FSH can cause ovulation. Progesterone cannot make any difference whatsoever to the follicular phase. All it can do is lengthen the luteal phase. If you're not ovulating there is no luteal phase

Taking progesterone cream isn't going to make a blind bit of difference to ovulation

The only thing that will work if metformin + low GL + inositol haven't been successful, is ovulation induction or laparoscopic ovarian drilling.

Oh and fertility meds don't cause cancer.

There's a reason NICE guidance recommends clomid for PCOS and fertility drugs for infertility. Because of evidence based medicine.

bananafish81 Fri 17-Mar-17 21:55:44

How exactly does natural progesterone work to restore ovulation please merin?

How does progesterone stimulate FSH production?

How does progesterone reduce elevated androgens which arrest follicle development?

How does progesterone in the luteal phase have any effect on the hypothalamic pituitary axis that regulates ovulation?

I'd love to know how progesterone cream completely reworks the intricate hormonal balance of the menstrual cycle. It sounds like magical stuff. You should be publishing this in all the journals because this is ground breaking stuff if you've managed to complete turn the HPA axis on its head

HereToHelp82 Sat 18-Mar-17 18:36:39

Hi all, I am new to the blog. I went Leeds centre got private IVF treatment as I was hoping for the 2nd child in May. Following the failure I was told it could be because of PCOS but was never told about it before the treatment. I had period issues since 2012 and was seeking for advice from NHS. It was a mere case of negligence. I was referred to Private IVF in October 2015. My 1st pregnancy is a natural one and was gestational diabetic during 1st pregnancy.
Consultant now advised to take inofolic after the failure to treat PCOS but been using it for 6months still sanity periods only.
Good luck for you..

merinl25 Mon 20-Mar-17 10:22:54

Natural progesterone contributes to restoration of hormone levels, together with other supplements mentioned.NHS will never prescribe natural methods because they would loose money.There are some doctors in other countries who stop miscarriages through administering progesterone.I was lucky to meet on of them.He saved my son from being miscarried.NHS will only "help" you to finish off miscarriage instead of saving the baby.Sorry, but witnessed it.They have to follow protocols.We use our own brains.

bananafish81 Mon 20-Mar-17 18:43:42

Doctors here prescribe progesterone to help prevent miscarriage

It's a standard part of miscarriage treatment

That doesn't have anything to do with restoration of hormone levels for PCOS

You're completely refusing to answer the question

How does restoring natural levels of progesterone have anything whatsoever to do with ovulation?

Maintaining levels of progesterone is only an issue if you're ovulating and there's a pregnancy to sustain

The problem with PCOS is not ovulating

Progesterone does absolutely nothing to stimulate FSH and therefore absolutely nothing to regulate ovulation

I am using my brain. I'm asking you to use yours.

How does progesterone do anything at all to induce ovulation for women with PCOS

bananafish81 Mon 20-Mar-17 21:04:21

NHS will never prescribe natural methods because they would loose money

Who would lose money? The NHS doesn't make money from meds. It costs them. It's in their interests to recommend effective treatments that cost as little as possible

It's not in their interests to prescribe treatments that haven't been through the appropriate safety regulations

And again. Please explain how progesterone could in any way help to regulate the hormonal imbalance that causes PCOS

You're talking out of your arse and if you want to make any kind of compelling argument it would help if you actually put forward any kind of justification for what you're saying. Given that what you're suggesting completely breaks the laws of nature

icy121 Tue 21-Mar-17 08:48:13

OP - Dealing with infertility is hard enough without being given "advice" from presumbaly well-meaning but clearly dangerously uninformed anonymous posters. People on a message board cannot diagnose you. They can support you through your situation and any treatments you need to have. Between a handful of contributors here they will probably have covered 90% + of treatment options. But whilst we can share our stories, NONE of us can offer you advice for your situation. We don't know. You need professional, medical advice: a suite a blood tests and a medical expert to review them with you and discuss the implications of what is (and isn't) found.

ANYONE advising you to buy supplements off Amazon is, frankly, being an arse. They cannot know what is going on in your body. They have their own agendas. And, to be honest, generally aren't infertile so they don't actually know what they're talking about. People who "cure" their infertility through diet & supplements and conceive within a few months aren't fucking infertile!! It's the equivalent of asking for advice for dealing with cancer or cystic fibrosis and someone saying "this is my diet, and I don't have cancer/CF, so it must work".

We can give you the names of consultants who have helped us, and once you know what's up, we can offer hand holding through whatever follows.

Almondmilk Fri 24-Mar-17 12:30:49

Hi all, thanks for all your replies.
I take supplements and was advised by a very good health shop. I feel so much better but my periods aren't back. So I am not going to add any more supplements. icy121 don't worry ;)
I have started yoga, at least twice a week but I wish to do it everyday. It's my goal. I believe it can help to feel healthier. I will try everything natural I can so I don't blame myself for being unhealthy and if I can not ovulate it won't be my mistake...
NHS seems to not be the key to ovulation success and people advise to go private which I can't afford. I'm thinking now that I should travel back to previous country or homeland to see doctors as it will be cheaper.

AppalazianWalzing Fri 24-Mar-17 12:47:33

Hi OP.

I was diagnosed with PCOS by the NHS some years ago, but wasn't TTC at the time.
I was told to come back when I was ready, and that the course of action was generally: metformjn, then clomid, then other options (e.g. IVF) but I presume that would depend on trust - you may or may not be aware but different trusts/NHS areas essentially have different budgets for different treatments.

Are you ovulating irregularly, or not at all? Have you been prescribed metformin?

In my case, I'm currently TTC: I found low GL diet, regular exercise (just walking to and from work) and metformin helped regulate my cycle initially. I've been temping and am satisfied at the moment my cycles aren't anovulatory. But different people respond differently, you may need different forms of treatment, and it may be worth travelling home if they aren't offered.

It would make sense to at least investigate your treatment options on your local NHS by going to a GP, providing them with your diagnosis and seeing what they recommend. Certainly I know many people have been successful with PCOS without having to go private.

There's also a UK messaging board called Verity especially for women diagnosed with PCOS that might be worth checking out. Best of luck.

Almondmilk Sat 25-Mar-17 13:41:27

AppalazianWalzing hi, thanks. I can not find the Uk board for pcos. Could you send me the link? I would much appreciate that. I'm gonna go to a GP to start with.
Pcos is not fun, it's also hard to understand for people who don't have it. Especially partners! I don't have periods at all. I got provera to get them every 3 months...I find it odd, why not finding something for every month.
Low GL diet is a good thing to do and I am trying to follow it but not strictly.
Should I try to check if I ovulate even if I don't have periods? My feeling is that I don't ovulate at all.

Almondmilk Sat 25-Mar-17 13:48:09

Is metformin only for overweight women? I wonder why it has not been suggested to me when I saw a gynaecologist in my previous country. She only sent me home with provera tablets every 3 months. Bitch didn't do much effort!

AttilaTheMeerkat Sat 25-Mar-17 15:45:47

almondmilk

www.verity-pcos.org.uk/ is Verity's website.

Metformin is usually only prescribed by consultants and not every woman with PCOS receives this drug treatment.

I would go to the GP and ask for a referral to a gynaecologist.

I would not bother checking for ovulation if you do not have periods. Sounds like your previous gyn fobbed you off and certainly did not make much effort.

bananafish81 Sat 25-Mar-17 19:11:37

Lean PCOS tends to be about insulin sensitivity rather than insulin resistance like with classic PCOS - so metformin and eating low GL are less likely to make a difference than they are with overweight women, where losing weight can make a big difference

But nevertheless PCOS is still a metabolic disorder: I'm low BMI (18) and my consultant prescribed me metformin.

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