PCOS - advice on next steps

[1989Frog]

Hi all

Just wanted to get some advice as I'm feeling quite overwhelmed as to what to do next. I got diagnosed with PCOS 6 years ago - I had been on the pill since I was 19 and when I went off at 28, I didn't have a period for 9 months. Had a scan which confirmed it - given we weren't going to want to conceive any time soon, doctor recommended I go back on.

I went off it 14 months ago in preparation for wanting to start later on in the year - my periods have been very inconsistent and after some shorter cycles, I'm currently on day 82. I spoke to my GP who has referred me to a specialist to get me on chlomid but the first available appointment is in October.

I haven't had any fertility testing done, husband had a sperm test which was all very normal. I am happy to go private but unsure where to start - am I better of getting a MOT type package done and will they be able to prescribe me on chlomid if everything else looks ok? I worry about being pushed into doing IVF or something more costly when I'm hoping I just need my ovulation induced. I'm 34, 35 in November. I've used the ovulation strips and seen positive sometimes but I've not done consistently given such inconsistent cycles.

Does any one also have recommendations of places in London to go? I've also been taking inosotil, vitamin D and folic acid as well. My BMI is around 25 and I eat relatively well but am trying to be better and reduce alcohol especially.

Any advice or guidance would be really appreciated!

[worldwidetravel2017]

Hertility health - i highly recommend
Results are very detailed
& you can add them to your nhs record
Then ask gp to refer to gynae re pcos diagnosis and desire to be pregnant

If i get a period this next week - my gynae is putting me on merformin
( i have pcos - am over 35 & have miscarriage history )

[worldwidetravel2017]

Gynae told me to reduce sugar
_ take high vit d
And eat low gi foods

[PocketSand]

I would recommend the verity website. Low carbing restored my cycles and allowed me to conceive naturally. No need for metformin or chlomid. This was 25 years ago. Shocking lack of progress.

[Chocchip09]

OP, I have PCOS. I was diagnosed at 15. I have a 2.5 year old and pregnant with our second.

Please do look into Myo-Inositol. I was taking 4000mg in two doses (once in morning and once at night). My periods started to regulate and were bang on 30-31 days every single month. Try the MyOva brand on Amazon, bit pricy but 100% worth it.

Definitely go for testing if you feel you need it but myo-inositol is a wonderful natural supplement and it worked wonders for me!

[worldwidetravel2017]

Inofolic ive been told to take

[Peonyyyy]

I don’t think you need to go down the ivf or even clomid route at this stage, I have pcos and one child, the things which helped me have regular cycles and ovulate were:

metformin
myo inositol
low dose aspirin (helps blood flow which aids implantation and growing a healthy baby)

could you chat you your GP about metformin firstly to see if they might prescribe it? I originally got it from a private endocrinologist but I think if you showed you know your stuff (it’s listed as a PCOS treatment on the nhs website) he may prescribe it without you having to wait for referrals.

IMO the root cause for infertility should be treated first before having fertility treatment, and in the case of PCOS it’s hormones, and most people who have it do really well just with metformin which is a very widely used diabetes drug.

good luck!

[Peonyyyy]

PS. I get myo inositol powder from Zita west as apparently it absorbs better than tablets x

[worldwidetravel2017]

Always good to check with consultant etc

Hertility health is a good first go to as they test so much
Are so thorough

Gynae can prescribe you metformin

Theres a range called prepped pots
You can filter - low sugar , low fat , high protein, high fibre etc

[longingtobe23]

Inofolic I used told to take when I found out I had PCOS and healthy lifestyle over haul even though I thought I was! Even cleaner and some environmental changes helped.
I did track with sticks to see a trend as I often ovulated later due to PCOS and 30-34 day cycles but Im finally expecting so best of luck to you!

Yes some private clinics can prescribe clomid as well if they find you aren't ovulating alone
But get the bloods done first and if you are ovulating they might not give it. I wasn't offered as I had positive ovulation on bloods.. just took me a little longer xx

Best of luck 🤞🩷

[worldwidetravel2017]

@longingtobe23

Inofolic I used told to take when I found out I had PCOS and healthy lifestyle over haul even though I thought I was! Even cleaner and some environmental changes helped.
I did track with sticks to see a trend as I often ovulated later due to PCOS and 30-34 day cycles but Im finally expecting so best of luck to you!

Yes some private clinics can prescribe clomid as well if they find you aren't ovulating alone
But get the bloods done first and if you are ovulating they might not give it. I wasn't offered as I had positive ovulation on bloods.. just took me a little longer xx

Best of luck 🤞🩷

Congrats :)

30 - 34 day cycles here too now.

They weren't last yr - last yr i still had some of 28 day ones ...

My ovulation can be day 17 - day 22 ish -

[longingtobe23]

@worldwidetravel2017 exactly the same as me!
day 17 sometimes later!? In the end god knows when I caught 😂 as my scan isn’t adding up with what I assumed!

it was so frustrating at times but you’ll get there 🤞🏻💕

[worldwidetravel2017]

@longingtobe23

@worldwidetravel2017 exactly the same as me!
day 17 sometimes later!? In the end god knows when I caught 😂 as my scan isn’t adding up with what I assumed!

it was so frustrating at times but you’ll get there 🤞🏻💕

Thank you

[Thornberry1]

Hey love @1989Frog , I found out I had PCOS after coming off the pill too. Also had this confirmed via a scan and bloods. And was also looking at a long wait list via the NHS so got a private appt at Chelsea & Westminster (Dr Norman-Taylor) and was prescribed Clomid. It worked first time and I'm currently 22 weeks pregnant :)

Appointment was around £200, Clomid was £10 for 1x 5-day round, then I also had a trigger shot which was £30ish. They said if the first round hadn't worked I'd have just been prescribed another 2x rounds (£10 each) and then if that didn't work they would prescibe a higher dose. For me it felt like the right plan for me and was worth the spend!

Bit of background.. I'm 33, BMI around 21 pre-pregnancy, good diet and do lots of exercise - I was told myo-inositol etc. is less effective if you dont have high testosterone, so could be worth checking your blood results before you spend money on loads of supplements.

Good luck! x

[sirensong]

@Thornberry1

Hey love @1989Frog , I found out I had PCOS after coming off the pill too. Also had this confirmed via a scan and bloods. And was also looking at a long wait list via the NHS so got a private appt at Chelsea & Westminster (Dr Norman-Taylor) and was prescribed Clomid. It worked first time and I'm currently 22 weeks pregnant :)

Appointment was around £200, Clomid was £10 for 1x 5-day round, then I also had a trigger shot which was £30ish. They said if the first round hadn't worked I'd have just been prescribed another 2x rounds (£10 each) and then if that didn't work they would prescibe a higher dose. For me it felt like the right plan for me and was worth the spend!

Bit of background.. I'm 33, BMI around 21 pre-pregnancy, good diet and do lots of exercise - I was told myo-inositol etc. is less effective if you dont have high testosterone, so could be worth checking your blood results before you spend money on loads of supplements.

Good luck! x

Could I please check what blood tests ultimately confirmed this?

A consultant doing a scan for another reason asked if I was insulin resistant/had regular cycles as I seemed to have quite a few medium size follicles on day 3 (not huge numbers overall - AFC 20), though did say there wasn't a characteristic string of pearls appearance. When I asked my GP about blood tests to check for PCOS they said past ones ruled it out, without specifying which.

[Thornberry1]

Hey @sirensong My GP basically said I needed to have 2 of the following in order to be diagnosed:

• Ovarian follicles (tick - my ovaries are also enlarged)
• Long / irregular cycles (tick - 37-60 days)
• Hormones in line with PCO (high testosterone only marginal for me, negative progesterone on blood test on day 20)

So I think for me it was that I was struggling to (or taking ages to) ovulate on my own, and he didn't think metformin etc. would make a difference as my blood sugar levels and hormones (progesterone aside) were in the normal range. So - clomid.

Hope that helps!

[DeeCeeCherry]

I had PCOS before it was really heard of or spoken about. Barely any periods in my teens and 20s. I didn't check it out - I was young and didn't realise it wasnt 'normal'. I read about PCOS when I was 28 or so and was taken aback that my symptoms matched exactly. Anyway, met partner shortly afterwards went for a chat with GP and he put me on Clomid. It worked within the 1st week. Weird side effects tho.

After 1st DC, I had 2nd naturally - even tho said GP told me after DC1, I wouldnt have any more. So I think Clomid is your best bet. I had DC1 when I was 31, DC2 at 32. I guess I needed a jump start🙂

[1989Frog]

@Thornberry1

Hey love @1989Frog , I found out I had PCOS after coming off the pill too. Also had this confirmed via a scan and bloods. And was also looking at a long wait list via the NHS so got a private appt at Chelsea & Westminster (Dr Norman-Taylor) and was prescribed Clomid. It worked first time and I'm currently 22 weeks pregnant :)

Appointment was around £200, Clomid was £10 for 1x 5-day round, then I also had a trigger shot which was £30ish. They said if the first round hadn't worked I'd have just been prescribed another 2x rounds (£10 each) and then if that didn't work they would prescibe a higher dose. For me it felt like the right plan for me and was worth the spend!

Bit of background.. I'm 33, BMI around 21 pre-pregnancy, good diet and do lots of exercise - I was told myo-inositol etc. is less effective if you dont have high testosterone, so could be worth checking your blood results before you spend money on loads of supplements.

Good luck! x

Thank you so much for your message - this is exactly what I am after and I've emailed Chelsea & Westminster private and a few other private hospitals. I have done AMH testing and everything came back normal - testosterone was on the slightly higher end but apparently not too bad. I've started taking higher doses of myo-inositol that is recommended so lets see if that helps.

Congratulations on your pregnancy!! How exciting for you - thanks again for helping guide my journey xx