Do you have to wait a year TTC before GP starts PCOS investigations?

(24 Posts)
blamber Tue 15-Oct-13 10:28:53

Hi everyone,

I stopped the pill in April and have had very irregular cycles, where ovulation has been late and I get my period only a week after. So far I have had two periods. My GP won't do any investigations yet, as he thinks it's normal that this happens after stopping the pill.

I have told him I am worried there is a hormonal problem, not just because of the irregular cycles, but I also have acne and hair loss. He told me that normally they wait until you have tried for a year before doing any investigations, but he would see me after Christmas. But I was thinking, how long should you give it after stopping the pill until you know there's something wrong? If there are multiple signs of possible PCOS, shouldn't they look into it sooner? The thing is, I don't remember what my cycles were like before the pill.

greenpencils90 Tue 15-Oct-13 16:35:59

Hi there, I've had a similar problem, I let my implanon (implant) run out over a year ago, and about 6 months ago my body went back to normal, however, i'd noticed some mid-cycle bleeds so went to the doctor. Because of my family history of PCOS they have started tests to see if everything is ok, and we aren't trying for a baby just yet (well, we use the calender method, so we aren't being too careful, so maybe that's why he has reffered me to have the tests done... incase i do have something wrong and it would effect a surprise pregnancy?) Anyway, has anyone in the family had PCOS before? If you are really worried, it might be worth seeing another doctor, some seem really keen to help, and others dont care as much! Good luck with the tests and results when you do finally get them, and huge fingers crossed that everything is totally normal!

woodwaj Tue 15-Oct-13 16:52:13

Hi, I had no periods at all when I stopped the pill, The first doc told me this was fine, I then got a 2nd opinion after 9 months and he referred me straight away. He said referrals usually take about 3 months anyway which it did so I was TTC 12 months by the time I had my first appointment. I was diagnosed with PCOS on my first appointment, a blood test the doc did confirmed it. Good Luck!

puddock Tue 15-Oct-13 17:02:40

9 months is fair enough I would say, especially if you've recently come off the pill. I understand how impatient and anxious you must feel, I remember it well....
I had a confirmed PCOS diagnosis before TTC, and hadn't been on the pill, GP still wanted to wait 1 year of TTC before referral to fertility clinic. I did manage to argue her down to 9 months, since referral would take a while and I was in my early 30s - this strategy might work for you.

blamber Wed 16-Oct-13 12:59:45

Yes, I suppose if he's willing to refer me after 9 months, that wouldn't be too bad. Hopefully it won't take too long to get an appointment and find out what's going on, if I'm still irregular by then.

Green, I don't think anyone in my family has it.

Thanks for your replies everyone!

gwenabee85 Wed 16-Oct-13 18:58:17

it might be worth trying to see a different doctor. my GP referred me in April and I'd only stopped the pill in Dec 2012, and it did turn out to be PCOS.
and as you said, it takes so long for appointments to come though on NHS that by the time they've done all the tests it'll probably be over 12 months :/

Blamber it's six months since you came off the pill and you're still irregular. Please get yourself back to the GP and referred on to a gynaecological endocrinologist for assessment. If your periods are irregular then there is absolutely no point in waiting any longer because the chances are that you're not ovulating spontaneously.

Might be PCO/PCOS, might not - but with your history of acne and hair loss he's talking absolute bullshit. See someone else and insist on a referral - there is no point in wasting time just for the sake "fulfilling criteria" that you no doubt meet x

blamber Wed 16-Oct-13 19:50:43

Thanks gwena and ohfour, I will definitely go back soon, maybe see another GP! I have given it time to sort itself and it hasn't yet, so hopefully I can make the doc understand.

blamber Thu 17-Oct-13 11:45:06

I went to see a different GP today and he's having a blood test done - I think for LH, FSH and testosterone. I'm glad he agreed to check it out!

Blamber that's wonderful news!

This is going to sound really bossy, but you really, really should make sure that you have the blood test between day 2 and day 5 of your cycle (day 1 being the first day of full flow bleeding) - early follicular phase hormone levels should give an indication as to whether you're looking at PCO/PCOS or perimenopause. A blood test at any other time of the cycle is not going to be useful......

DearDinah Thu 17-Oct-13 14:35:47

Good luck Blamber hope they get to the bottom of it, please come back and update us, I'm in a similar position (as I'm sure a lot of us are) my nurse (can't get an appointment with a GP at my surgery to save my life!) said I've got to wait until the Spring (12months). Even though I'm still very irregular and covered in acne sad

Oh Dinah, please please go back and see a GP sad - that's absolute crap. Even if you book an apt weeks in advance then please do it; if you really can't get an appointment ask to speak to the Practice Manager. If they won't help then contact NHS England - they are now responsible for looking into GP complaints. Please don't let this lie.

NHS fertility policies state that referral after 12 months is recommended but only if there are no other factors to consider - i.e. if you have an irregular cycle then earlier referral is indicated.

If you let me know where you are then I'm more than happy to help you find the full policy x

blamber Thu 17-Oct-13 15:23:02

I agree! I can't believe you can't even see the GP, dinah.

blamber Thu 17-Oct-13 15:24:24

ohfour, thanks for that info. I thought it was logical that the 12-month rule was only if there were no obvious issues, but it's good to hear that there is a policy that says so too.

All the policies I've ever come across explicitly state what the 12 month rule should be (if all else fails the NICE guidelines, updated February 2013, state this - not legally binding but they are a good start).

The trouble is that a great many GPs are unaware of this and still insist that patients wait to be seen.

The worst (but not uncommon scenario) I've come across was the referral of a 39 1/2 year old lady who had been TTC for three years. The local policy stated that IVF/ICSI etc would only be funded after three years of trying. What the GP failed to realise was that, as she had irregular cycles for three years, she should have been investigated far, far earlier. The local three year rule in that case was for couples with unexplained infertility and their access to treatment, not to investigations. And as she was approaching 40 she should have been referred within 12 months even if her periods had been regular.

So my advice would be, if you have irregular periods, especially with acne, hirsutism, weight problems (either too light or too heavy) - or no periods at all - seek advice ASAP. Similarly if there is a history of chlamydia infection, extreme weight gain or loss/history of eating disorders/if BMI has been 19 or under in adulthood, pituitary disorder, personal or family history of cystic fibrosis (particularly men but women too as they can be carriers), in men - history of trauma to the penis/testicles, mumps - seek advice sooner rather than later.

Also there is a link between PCOS and diabetes - so you should also just be aware of this when deciding whether or not to seek help.

Blamber, thanks for the PM - if you want to let me know exactly where you are then I'm more than happy to help you find the local fertility policy for your area.

DearDinah Thu 17-Oct-13 16:10:36

Thanks ohfour I have the forms to fill in to change surgery, just this week I had chronic stomach ache which turned out to be gastritis and was told by the receptionist at 8.30 in the morning that GP's were booked up and the nurse was taking emergency telephone calls only. You can't book a GP in advance, I haven't seen one in over 2 years! They ask you on the phone what's wrong with you and then get the nurse to call you, rather than get you in to see a doctor.
In fact, I remember just after I got married I went to see the nurse about a pap smear and she asked if I was considering children as I was 'getting on a bit' (aged 28), and now the same nurse has said it can take time for periods to regulate after the pill! (Aged 30)
I stopped end of May and have had three 'real' periods, my cyles have been 37,53,46, just started trying to track BBT and it's lower than average and very up/down. Do you think that would warrant earlier investigations?
P.S I'm in Cheshire East.
P.P.S sorry for waffling and hijacking thread!

TBH BBT can be useful in terms of "peace of mind"/"additional evidence", but all the doctors I've worked with prefer to look at blood/ultrasound results to track. It's also quite unlikely that your GP will take this "seriously" IYSWIM (I don't mean this in a horrible way, it's just that you're more likely to get a referral with investigation results that prove that you need to be seen rather than a list of BBT's.

Also with cycles lasting 37-53 days I'm not surprised the BBT is up and down!

Having said that, it depends very much on how you feel -if you feel that it helps to chart then carry on, but if you feel that it is an additional source of stress at what is already a stressful time then put it on the back burner.

If you're going to change surgery then the other thing that you need to make sure of is that you register at a Practice that is in your area. Have a look on the NHS Choices website and put your postcode into the "find a GP" tool. To give you an example, I live in Hillingdon in London. However we are close to borders with Herts and Bucks. As I live in Hillingdon I need to be sure that my GP is also in Hillingdon - even if there is a surgery that is geographically closer in Herts/Bucks. Because there isn't a standard IVF policy across England and policies vary according to what we now call Clinical Commissioning Groups (formerly known as Primary Care Trusts or PCTs), if you live in one CCG and are registered with a GP in another then this can affect your NHS funding entitlement.

HTH!

blamber and DearDinah as well,

Do not let the GP fob you off like this.

I had similar problems with a lack of periods and was referred onto a gynae after 6 months. It took a further six months for the referral letter to arrive. My initial diagnosis was PCOS. Many GPs are still pretty much ignorant to my mind when it comes to such issues because they are after all generalists.

You will need to be persistent in order to get answers.

Dear Dinah, charting with irregular periods will give you a chart akin to the Rocky Mountains. I would stop charting with immediate effect as its no point. I also thought PCOS on reading your post.

blamber Fri 18-Oct-13 09:53:25

Oh no, I was underweight for a year or so ten years ago due to an eating disorder. I never thought it could be the cause of any problems now and never mentioned it to the gp. Well, now I know that if the blood test is inconclusive I've got another reason to press for more testing.

Taking my temperature seems to work for me, they're quite stable and show a clear shift after ov time.

blamber Fri 18-Oct-13 09:57:44

I just never expected any trouble. I came off the pill 1-2 years ago for a month, because I had run out, and I got ov cramps 2 weeks later and then my period around two weeks after that. I don't know what has changed in the meantime and why it's all messed up now.

NerdyBird Fri 18-Oct-13 10:22:37

It's all very frustrating isn't it?

I'll be making an appointment on Monday if I don't get my period by then. I have just moved surgery so they don't have my notes yet, but when I went before (for something else) I did mention to the Dr I saw about TTC, and having been diagnosed with PCOS so I will try and see the same one. She said to me about waiting a year, but that was when my periods were regular, so I'm hoping they might take action now if things have changed.

Am off to see if I can find out what the policies are in my area.

On temperatures, I just started tracking this month, and they were fairly stable until ov time. Then my thermometer promptly broke, so only started again when AF was due. They are more up and down this time, which is interesting. I also had already ordered some cheap OPKs so I'm going to see if I now get highs when I shouldn't. I've definitely had negatives and positives at the right times before, so again it will be interesting to see if that has changed. I think it will be useful (for me at least) to note the differences. Sort of like an experiment!

blamber Fri 18-Oct-13 11:17:20

Hi nerdybird, when was your last period? And before they were regular?

NerdyBird Fri 18-Oct-13 12:21:55

Hi blamber

Last one was 4th sept. 35 day cycle for 5 months, before that i was pg but had mmc. First period after stopping the pill was 35 day cycle.

blamber Fri 18-Oct-13 16:57:42

So you're very regular, except for this cycle? Hope the gp will help on Monday!

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