PCOS - where to start?

[CRbear]

Hi everyone!

My partner and I would like to start TTC in about a years time. I’ve never had regular period (am on the mirena now) and have previously been diagnosed with PCOS. A number of years ago now. I am 31.

I’m sorry if this seems like a silly question but when we decide we’re ready to start TTC…do we just get the mirena out and see what happens? Or having had a diagnosis of PCOS and knowing I don’t have regular periods do I see someone (who? GP for referral?) for help straight away? If yes are they likely to tell me to lose weight before anything else? I’ve got a BMI of 27 right now and if I’m going to need to lose weight then I could do that now. I guess I’m wondering if there’s anything I could now to improve my chances? Is it worth getting any further testing done at this stage (even privately?). It does weigh on my mind and knowing what the “plan” would be would help I think. Even if that’s just have a lot of sex and cross your fingers…

Sorry if this seems like a silly question. I genuinely feel a bit overwhelmed by it all - maybe I just can’t see the wood for the trees!

PCOS presents differently in everyone. Some have anovulatory PCOS, some people ovulate every month. You don't really know where you'll fall on the spectrum until you take out your IUD.

It can take a couple of months for your cycle to regulate after removing your IUD. If I were you, I'd take it out ~six months before you're planning on starting TTC and start tracking your cycles using BBT and OPKs. I don't recommend just OPKs as you can get false LH surges with PCOS. BBT is a more reliable way of detecting ovulation. Personally, I've found my Tempdrop has been an excellent investment.

I've heard of people with anovulatory PCOS losing weight and starting to ovulate on their own. If you find you ovulate on your own, a BMI of 27 is probably fine. I think 30 is when the fertility clinics ask you to lose weight before they'll treat you (not sure if that's all treatment or just IVF though). A healthy diet and regular exercise is more important than weight loss at your BMI (although that's just my opinion!).

If you start tracking and find you're not ovulating, you'll need a few months of evidence to get your GP to do some tests. So the sooner you start the sooner they'll help you if you're not ovulating.

Really though, getting to know your cycle is probably the best thing you can do. Then you'll know whether you need to seek intervention or can try on your own.

Thanks @kennetrose - temp drop looks really good. I don’t know how much to get “into” this early rather than not worry about it and worry if/when I have to m. I’m inclined to think 6 months of data would be a great thing to have right off the bat though - I like data haha

I don’t feel like my weight is an issue. I cook everything from scratch, swim with a squad twice a week and run with a club once a week. I’m healthy. But I know that the bmi scale can be stuck to by doctors religiously and it would be triggering for that to be a barrier. I’ve had weight issues in the past.

I’ve never really had periods so I do suspect ovulation will be an issue

Even with a known ovulation problem, sadly the nhs will not assess you until you have been trying one year to conceive. Ridiculous I know!

Lose weight, get fit and then try.for me making sure I kept a regular sleep/wake pattern and got lots of sunshine really helped.

I had heard that @TheDaydreamBelievers - barmy. Surely some people just lie! I’d like us to try for a year anyway, if it can happen naturally I’d like to give it a good shot to see if we can avoid all the intervention.

@5zeds do you think I’ll be denied medical help based on a bmi of 27? If not I’d rather focus on holistic health. I’m trying to step away from the notion that a bmi of 25 or under equals healthy because it’s not always true and I’ve found it quite harmful in the past. I’ve got the best relationship I’ve had with good I’ve had in my life right now and I don’t want to jeopardise it trying to lose weight if I don’t need to.

@CRbear check the healthboard but my understanding is that BMI over 30 is the cut off for fertility interventions so 27 should be fine

I would try to go low GI if you aren't already, not necessarily to lower your BMI but pcos increases hour likelihood of gestational diabetes so if you're in a good habit of low sugars then you'll be better off. It will also help regulate your pcos symptoms

@TheDaydreamBelievers

Even with a known ovulation problem, sadly the nhs will not assess you until you have been trying one year to conceive. Ridiculous I know!

I got assessed at 18 for PCOS without ever trying for a baby. I think it's based on your doctor. I'm now 29.

If you get a good doctor and let them know you suspect you have pcos, they should really investigate.

@Volcano10 I definitely have PCOS, it’s more the investigations they do into fertility and help you might need that nhs make you wait a year for (of trying for a baby unsuccessfully)

The NHS don't make you wait a year if there is evidence that suggests there may be a problem - e.g. a lack of ovulation or cycles over several months. I think three months is when a GP will be interested.

Oh that’s good to know @kennetrose. Ok I’ll plan to come off the mirena 6 months before were ready to TTC and temp/test to keep track of ovulation for that 6 months and if it shows a problem I’ll to see the GP. I’ll also look into eating in a lower GI Way and keep exercising/keeping my weight stable. Thanks everyone!

@CRbear I honestly don’t know, but my opinion is that the most proactive thing you can do is be leaner and healthier. I needed a lot of help to get pregnant and a fair bit to stay pregnant. I think being lighter would have helped but people don’t like to say it.

If you don't have periods, it's unlikely you are ovulating regularly, if at all. I think women should be taught more about fertility. I was clued up from my early 20s and as I knew I would have an issue conceiving I began early. No ovulation=no pregnancy.

I started TTC at 21 with PCOS..it took three miscarriages and an ectopic pregnancy and lost tube, fertility clinic referral and prescription of Metformin, before I conceived my rainbow baby boy at the age of 28. I started young due to suspecting it would take a while...and it did.
My.advice to anyone wanting to TTC especially with a condition such as PCOS, is to start ASAP.

Metformin can be given and in me, someone who never had periods, it restarted them, I ovulated and conceived.

@Imnewhere1991 - I’d say you’re right we aren’t taught enough however I don’t think we should be told that if you want kids start early at all costs. I’m fully aware and have been since about 22 that I have PCOS and it might cause fertility issues. At 28 I was explicitly told to get on with it. But I also wasn’t ready for a child. So I decided that there was no point worrying about it- I wasn’t with the man I wanted kids with, I couldn’t provide the kind of life I wanted to provide etc. I had to accept that the tradeoff would be there was an increased chance I wouldn’t have the time I needed to get the help I might need. But I’m there now and I think I’ve got a few good years in me haha so I’m starting to do the research to find out what I need to do to be most efficient.

@5zeds - you’re probably right. I might even start ovulating if I got leaner. It’s just such a daunting task. I’ve lost a lot of weight to get here and the next chunk feels really difficult. I don’t want to set off my issues with eating and end up higher than 27!

You may find it easier to lose weight on metformin. Ask your Dr if that’s appropriate for you.

@5zeds that’s worth a shot. I could contextualise it too with TTC and see what they say.

@CRbear I totally understand that. Everyone's circumstances are different..I met my now husband at 21 and he was happy to begin the TTC journey but I appreciate it's not that 'simple' for everyone. Best of luck to you. X

@CRbear it seems to be very postcode lottery for healthboard and GPs. Some will intervene for just PCOS, some for PCOS +Ttc, some will ask you to wait a year even if both are true (sadly, that's the case where I live)

Sorry to jump on - has anyone ever looked at buying there own prescription of clomid of nhs won't help?

@ElleFrance2

Sorry to jump on - has anyone ever looked at buying there own prescription of clomid of nhs won't help?

I considered it when things felt desperate. However I wimped out in the end. Clomid is a drug that needs to be monitored. The follicles need to be seen via ultrasound as sometimes too many can develop and it could be dangerous to TTC. Also, you won't be sure if you are buying a safe version. Sorry to be a bore, I know the desperation TTC can bring and the measures we would go to. Why would the NHS not provide it?

I would probably consider it but don’t know if I’d do it for the reasons given by @Imnewhere1991

As an aside- since this thread- I’ve found out that the NHS offer pre pregnancy/conception counselling about just these sort of “I have this condition, anything I should know/what should I do” situations- so I’ve requested a referral from my GP! Sounds too good to be true I wouldn’t have even looked for something like this but it’s exactly what I’m after.

I already have a child from before I knew of my diagnosis whilst I was in contraception. I am now however struggling to get pregnant.