Help, totally lost! Docs seem useless!

[Rmad6716]

Hello ladies,

I'm so confused right now and feel stuck in a rut.

I have been told I have PCOS and have been waiting for a cycle to test for ovulation.

I've now had this done but I didn't realise the doctors just seem to assume that every woman has a perfect 28 day cycle... so if my last cycle was 35 days then I should be tested on day 28? Is that correct? They tested me on day 21.

My life seems to be going to shit with the never ending acne, excess hair and depression/anxiety. Not knowing the next steps for me and my husband is draining.

Day 21 came back at

[ScottishJaggyNettle]

Hi I just wanted to say that you are not alone. This is tough but please do not worry.

Day 21 tests should be adjusted to your cycle so if you have a 35 day cycle then you should do a day 21 test on day 28 to check if ovulation had took place. If you explain to your doctor that you have a 35 day cycle they will arrange your day 21 test on the appropriate day. The pregesterone(Day 21) test should be done 7 days before your period (So far as i can remember) Did your doctor not ask about the length and frequency of your cycle?

If you have a 35 day cycle make sure to have sex between day 16 (5 days before ovulation) and 26 (Roughly 5 days after ovulation just incase you ovulate a little late). This should help you to maximise your chances. Have sex every 3ish days as this keeps sperm at its "freshest" & keep up the good work with your supplements , which ones are you taking?. (Tell him to make sure that he ejaculates every 3-5 days as it then means the production of sperm is at its best)

Im sure this is correct but if someone else could please confirm ???

I am unsure about your progesterone question. Hopefully someone on this lovely world of MN can help ????? Progesterone can be prescribed by a fertility doctor as far as i am aware as i have had it for my IVF cycle. Many medicines are avaliable for PCOS to help you ovulate if you are not and ivf is also a possibility. Are you being seen by a fertility Dr or just initial investigations by your GP ?

I hope this helps.

[physicskate]

The likely reason you had low progesterone is because you didn't ovulate. Progesterone rises after ov and is produced by the corpus luteum. So we don't have enough info to know that you have low progesterone during the luteal phase because you didn't have the test at the right time.

Ovulation issues are a relatively easy fix for most in the infertility world, so that's the good news. They will likely put you on clomid or possibly letrozole - which both have great success.

Infertility is shit. It's literally one step forward, two steps back. It's not surprising that it's affected your mood...

Knowledge is power, as they say. Become your own advocate. If they mention something to you, go away and read about it. I'm sure you already know about low gi foods and metformin and my inositol to help control the pcos? I don't have pcos, but I have polycystic ovaries, so then went away and found out as much as I possibly could. It made me feel like I'd taken back that little bit of control. Good luck!

[AttilaTheMeerkat]

Sadly you did not ovulate this cycle and a low level day 21 is commonly seen in PCOS patients. You were not tested for that particular hormone level at the wrong time and having this done a week later would have made no difference. I was given progesterone pessaries when I eventually became pregnant (I was diagnosed with PCOS through blood work and internal ultrasound scans).

Have you been referred as yet to a subfertility unit because if you have not you should be. PCOS is not a condition that should be messed around with by GPs; you need specialist help here.

They also ideally need to be looking at your LH and FSH levels as part of a day 3 test because these are usually imbalanced when it comes to PCOS (there is usually an excess level of LH when compared to FSH). Its no point whatsoever in testing progesterone levels this early in a cycle.

Would also suggest you become your own advocate and educate yourself further with regards to PCOS because knowledge after all is power too. Verity's website for PCOS www.verity-pcos.org.uk/ is very good in this respect and covers many aspects of this condition. You may also want to look too at Fertility Network's website fertilitynetworkuk.org/

[Rmad6716]

Thank you for the replies ladies.

I think maybe I was just hoping that longer cycles meant that it was maybe the wrong time to test.. . Damn.

Is it common to get cycles that aren't overly long with PCOS and still not ovulate? I was so sure that because I have had some normal length cycles that I must have ovulated. OPKs don't seem to be any use to me either. I have ordered an ovusense monitor and I'm awaiting delivery.

I have been having blood tests done from my GP since March. First time they didn't do right ones, then in April they did the correct ones and they showed high androgens. I think my FSH/LH may actually have been on the lower scale. I will pester for the full picture tomorrow as they have requested I get another progesterone test tomorrow.

I will push push push for the GP to refer me as I'm aware it can take a while to be seen.

The supplements I'm taking are:
Inositol 2x daily
Liquid iodine
Fish oil
Zinc
Magnesium
Selenium
Folic acid

Had my first acupuncture session last week too.

Trying to eat hormone free meat. Had a food test done and I'm intolerant to eggs and dairy.

I'm 'slim pcos' I think 🤔 . I'm 5ft5 - 67kg.

Face covered in acne, a better beard than my hubby! 🤣

I will do more research and go to the doctors armed with it.

Would you recommend I ask for some kind of progesterone prescribed just in case I somehow get pregnant? Or would they need to do more tests first ?

[physicskate]

You don't need progesterone like you need to get a referral to infertility and stop mucking about with a gp. They are great, some better than others, but they are NOT experts on infertility. It's not uncommon to hear about a GP asking for tests on the wrong days...

You would need a fair few low day 21 tests before thinking about progesterone. One test (done at the WRONG time) is not conclusive enough to require progesterone prescribing.

[Rmad6716]

My update is I pushed for tests on the correct days.

A week and a half after my first acupuncture session I ovulated. They then did the first test at 1DPO. Level raised to 4.2 nmol/l. I didn't know I was about to ovulate when the test was arranged!

Then called doc again and asked to be retested at 7dpo. Level was 35.5 nmol/l.

9dpo now. Don't feel remotely pregnant so not holding out hope.

Sorry for being so panicky. I just have a lot of anxiety and worry. The smallest issues and worries seem to consume me sometimes.

Had my second acupuncture now and finally starting to chill a little.

How are you getting on @physicskate
How many weeks are you now? X

[physicskate]

17 weeks today!! Feeling some weird things which may or may not be movement!

[CornishMaid1]

Your first test was at the wrong time - most people have a 14 day luteal phase and the progesterone peaks halfway through which is why it is day 21 bloods.

If you have a 35 day cycle you would probably ovulate on day 21 so need your blood test on day 28 and that is why your level on the first test was so low.

[CrispAddict77]

It all sounds really positive! Your level of 35.5 is perfectly fine, which just proves that the previous test was just done too early.

I’m afraid it’s really hard to tell whether you are pregnant or not this early on. So just keep thinking positive and don’t test early! Enjoy that feeling of maybe being pregnant. It will happen for you and it’s all looking good. Best of luck x

[autumn18]

Just jumping into say take vitamin D as well

[BGDino]

@Rmad6716 I was told PCOS was a contributor but not the whole explanation for me not ovulating at all (DH checked out A-OK so no male factors) my fertility specialist chose letrozole to induce ovulation for me, he said most fertility specialists will go for letrozole over clomid for PCOS as there is better evidence for it whereas general ob/gyns are often more comfortable with clomid as that’s what they’re familiar with. He also said that he only tries it for 4 cycles before moving onto IUI/IVF/ICSI. It’s said letrozole has fewer side effects than clomid. I personally didn’t get any but YMMV.

FWIW we got very lucky and I’m 8+5/40 with our little dumpling from our first and only cycle ... this might be TMI but we also made sure we did the sexy every day of the period the fertility nurses advised (so top marks to DH for coming up with the goods ) however during the process itself I went through sadness/guilt/depression/anger.

[craftycanary]

Hi everyone, jumping on this thread as I have similar issues to you @Rmad6716 and feeling a little bit lost and confused like you!

I have just started having blood tests but again due to having really long/irregular cycles its tricky to know what day to test on.

As background, I came off OC pill in March 2017, started TTC in August 2017. Periods were quite normal apart from the odd bit of spotting at random times. Then in October 2017 I had a 38 day cycle, and had cycles which were consistently 38-41 days long up until June 2018. Since June I have had a mixed bag of cycles ranging in length from 28 days to 39 days. WTF!?

Have also gained almost 5 stone since coming off the pill, plus horrendous acne. I have been tested for PCOS with blood tests and scan which came up all clear, but the last GP I saw said that the tests were done at the wrong time in my cycle so I have no idea whether or not I have PCOS (but I have all the symptoms) and whether or not I am ovulating. Soooo frustrating! Just seems to be going on forever.

GP has very helpfully told me that I should try and lose some weight (NO SHIT SHERLOCK!!) rather than trying to work out why I've gained all the weight.

So anyway sorry for rant but @Rmad6716 I feel your pain!!

[CrispAddict77]

Hi Craftycanary, I’ve been through ttc with pcos. Tracking cycles, missing ovulation or even not ovulating in a cycle was a nightmare. Can I ask, when you say you had a scan, was it abdominal or internal ultrasound? I only ask because when I was undergoing tests for pcos, they could only see the cysts once they used the ultrasound wand internally.

I’m afraid losing weight should be an absolute priority for you now. Even just 10% loss can kick start your ovulation. The drs probably won’t offer you much help yet, as clomid and other methods of inducing ovulation don’t work with heavier women. But, miracles do happen so keep trying but also keep a record of your cycles.

You don’t have to have the perfect length cycle to fall pregnant, there’s always hope. My ds was conceived on what would have been a 42 day cycle.

Good luck.

Oh, and OP, have you made any progress with the dr?

[CrispAddict77]

Rmad6716, how are you getting on? Any bfp? Got my fingers crossed for you. Your progesterone result was very good so if it hasn’t worked this cycle, it will only be a matter of time for you when it does work x

[craftycanary]

Thanks @CrispAddict77 - yes I had both external and internal ultrasound scans, but now I've been told the blood tests were done at the wrong time I'm now dubious about the scan results ... do they have to be done at a certain time?

Losing weight is definitely a priority for me but as someone who has previously lost lots of weight relatively easily, I'm finding it super difficult this time round. Having read up about symptoms I'm thinking that insulin resistance may be contributing factor to my unexplained weight gain (I haven't had any other dietary or lifestyle changes which warrant such a massive gain) so I was hoping that the doctor might be able to help me with some more useful advice than 'go on a low carb diet' seeing as I already eat low carb and a (generally) very healthy diet. I used to be able to lose half a stone with a couple of weeks of healthy eating so its really disheartening to try so hard and get zero results, which in turn makes you feel like not trying!

Been reading lots of info today which has given me a bit of a kick up the arse to try and work a bit harder both on stepping up my exercise regime and pushing my GP for more useful advice!

[physicskate]

No carb (or at least super low gi diets can be really useful with insulin resistance.

Scans don't need to be done at a certain time to diagnose pcos. The signs are so n the ovaries throughout the cycle (the so-called pearl necklace).

Day 2-5 you need lh and fsh (and testosterone).

Seven days after ov (about 7 days before af) you need a progesterone blood test.

You need two of the three criteria for diagnosis: polycystic ovaries, physical symptoms and an lh:fsh ratio of 2:1 or greater.

[craftycanary]

Thanks @physicskate

I had a CD21 blood test for progesterone last week, got one tomorrow too which will be my CD28.

When AF arrives will be booking in for LH & FSH and will have to see then whether my CD21 and CD28 were enough to give a clear picture as my cycles are so irregular we didn't know when 7 days before AF would be!

I obviously am not wishing for a diagnosis of PCOS, I was hoping that symptoms would go away after hormones from OC pill left my system, but it's been such a long time now that I just want some answers and a diagnosis would give me that I guess.

And hey, maybe AF won't arrive anyway and I'll get my bfp! We can only hope!