Lean PCOS (?) but all signs of ovulation, borderline high AMH

[Sierra26]

Hi, wondering if anyone else is in this position.

TLDR - just been told I have lean PCOS, but I don’t understand what the problem is as I have lots of evidence of regular ovulation.

• TTC 2 years
• 26-28 day cycles (got shorter over the years) with very occasional late ovulation / 30 cycle
• I’m 35
• Had spotting pre AF ever since going on contraceptive implant in early/mid 20s
• lh tests and bbt confirms ovulation every month (or so I thought)
• had hycosy and scans, and various other private tests over past year. All came back normal.
• AMH 22.5
• slightly reversed LH:FSH ratio on day 3 (3.3:4)
• Tried 3x rounds of letrozole at my request, no trigger shots, no bfp, but ovulation confirmed through progesterone test and corpus luteum on scan
• progesterone tests all good (so I was told)
• normal bmi (21.5)

NHS consultant has just referred us for IVF while we continue with a few more letrozole rounds, but took a look at my results again and started talking about my PCOS. This was news to me. Four specialists have looked at my results before now, but this one thinks my high (ish) AMH and low (ish) progesterone indicates lean pcos and ovulation issue. No one has interpreted my results that way before.

Polycystic appearance was mentioned on one of my letrozole scans but I asssumed that was normal due to the effects of the ovulation stimulant.

I’m so confused. What’s the problem even if I do have lean pcos, I have no symptoms of it, and seem to ovulate each month. Would my bbt temp be going up without actually ovulating??

Anyone else facing this confusion? :(

Hi @Sierra26 PCOS seems to be a poorly understood issue and doctors seem to have very different opinions on it. I’ve been told that in order to qualify for PCOS you have to have 2 of the following 3 criteria:

• polycystic ovaries
• high androgen / testosterone levels
• irregular periods

I have the first but don’t have the second two and so was told I don’t qualify for PCOS (I had wondered whether I had it because I also get pre-AF spotting, progesterone was normal but on the low side and tbh very borderline and I also have really struggled with my skin since coming off the pill). I too have a lean BMI and all signs show I’m ovulating every month.

I have heard that high AMH can also be a sign of PCOS (mine is actually the same as yours but I’m 30, so don’t know if that makes a difference) - my friend was diagnosed with PCOS because of her high AMH (even though she didn’t have 2 of the 3 other criteria) and she was given Letrozole and progesterone and a few months later she conceived her DD. She was definitely ovulating because she has quite a few chemical pregnancies and early losses.

Again though it seems to vary from doctor to doctor; my doctor is reluctant to prescribe me Letrozole because they say I’m already ovulating, but other doctors seem to prescribe it anyway as a chance to ‘boost’ ovulation. I think there is a difference between ‘weak’ ovulation and ‘strong’ ovulation, although I’ve never quite understood what it is, so maybe you’re having the former? I think unfortunately the hormone imbalance PCOS causes at the beginning of your cycle (eg with FSH/LH) can affect egg quality, so you might be ovulating but the eggs may not be fully mature or properly developed? I think the best thing is just to have a conversation with your doctor and explain your concerns - hopefully they can explain it to you better than I can - and remember knowledge is power: if you do need to have ivf they can now adjust your protocol accordingly and I think ivf has very good outcomes for people with pcos!

Thank you so much for your detailed reply! How interesting that our signs/symptoms are similar. I definitely only have the first out of those three diagnostic criteria, but the polycystic ovaries combined with the high(ish!!) AMH has given this picture. I wonder if a different doctor would take a different view re labelling it as pcos.

I’ve asked and asked about being given progesterone, like your friend, but everyone seems very reluctant to prescribe it. I basically begged last time and said it’s the only thing we’ve not tried. The compromise was I’ve got another day 21 test this month and we’ll reassess after that…

It’s reassuring to hear others with pcos ovulate regularly, and there must be something in what you’ve said about weak versus strong ovulation. I think that will be my next route of questioning and research!

I hope you have success, and would be interested to hear of any developments you have! Xx

Forgot to tag you @hopingforapeainapod

Hi @Sierra26 no problem at all, it’s only because I’ve done so much research on it myself because I’ve wondered so many times if I have PCOS! I really don’t understand why doctors are so reluctant to prescribe progesterone?! My friend similarly had to beg for it and they only agreed to do so after she had had three losses which just seems insane… best of luck to you, will keep you updated! I’m having a Hycosy tomorrow and will hopefully be able to make some decisions about next steps then! 🙃

It might not be you if you are ovulating. Has your partner had tests?

@hopingforapeainapod hope your HyCosy went well! Mine was very painful and took over an hour as the three different docs who tried couldn’t get the catheter through my cervix. didn’t want to tell you that before yours and freak you out 😬😂

@Swirls346 partner’s tests all normal!

Hi @Sierra26 it definitely wasn’t pleasant but was fine in the end! The catheter going in took a bit of fiddling but was actually fine, the only real painful bit was the dye going through but just as I thought it was getting too intense to cope with they were like right it’s over! 😂 but tubes are all clear and they said my uterus lining etc looked great so that’s the most important thing.

Out of interest, have you had a sperm dna fragmentation test? My partner’s semen analysis all came back normal too (although at the low end of normal) and I’m thinking about getting one done, just because it’s the last real test to rule things out…

@hopingforapeainapod aw at least it’s behind you now! No we haven’t considered that her (the fragmentation test). Do you know if this is done as routine pre IVF? Were waiting for NHS referral to be picked up.

it would be good to rule another thing out!

@Sierra26 unfortunately I don’t think is done as routine pre-IVF but I’ve been listening to lots of podcasts on it (there’s some great episodes on male fertility testing on Don’t Tell Me To Relax) and high sperm dna fragmentation can really negatively affect IVF outcomes (and also affects ICSI as well) so I would personally definitely get it done before starting IVF! Apparently you can have a normal sperm analysis and high DNA frag which I didn’t realise, but the more I read about it the more I really don’t understand why doctors don’t offer it?!

@hopingforapeainapod Ooh I’ll check out that podcast! There seems to be so many investigation options out there not routinely offered by nhs. Why wouldn’t they want to try address issues more naturally before ivf, or better predict ivf outcome to assess suitability. Perhaps on average the consultation time it takes assessing those things is actually more costly than the funded cycles of ivf, so they don’t include them in the protocols.

If our ivf waiting time is longer than a few months we’ll go for a private consult and see what else they suggest, and I’ll keep the sperm dna fragmentation test front of mind.

Where are you on your journey? I wonder if the hycosy will give you a boost this month!

@Sierra26 I have no idea! The podcast said it’s because most fertility clinics are really IVF clinics, and so are run by IVF specialists rather than gynaecologists and urologists and so if an IVF will get you a baby that’s what they prioritise over looking for a root cause!

I think I’m 4 or 5dpo, so in the dreaded TWW. Trying my hardest not to get my hopes up but obviously hoping for a Hycosy Xmas miracle (my period is due just before Xmas - typical!) I’ve heard mixed things though - some people say the dye they use in the Hycosy can affect implantation, so people tend to have more luck the cycle after the procedure, but who knows…

How are you getting on?

@hopingforapeainapod ahh good observation re ivf clinics! Will make sure to keep that in mind if we do have to look for a private one.

Omg same, I’m either 4 or 5dpo! Cycles are on the short side so due AF next Wed. Christmas is going to be very up or very down! This is my first unmedicated cycle after 3x letrozole cycles (didn’t get it prescribed in time this month, but will have 3 more after this while waiting for ivf). This cycle I’ve started infolic alpha for pcos/insulin and a probiotic (I read somewhere if your uterus biome is off it can affect your implantation window)… the things we’ll try!! Spending a bloody fortune.

I’ve started spotting so this is the beginning of the end of this cycle for me :(

I’ve been non stop researching the last few weeks and I’ve ended up quite frustrated at how limited the NHS fertility investigations are. There is SO much to look in to re root cause of unexplained infertility (and/or PCOS). Yet rather than managing the chronic condition, they just refer on to IVF. It really must somehow be the cheaper option for NHS. The more I hear ‘unexplained fertility’ the more it angers me - that’s not a diagnosis, it just means ‘we don’t know and aren’t going to bother to try’. It’s so sad.

So I’m building up a bit of a self management and investigation plan to keep me focused during the wait for IVF slot. If it still doesn’t help us fall naturally at least I’ll know my own body better and might be a bit healthier at the end of it!

@Sierra26 I hear and share your frustration. I have a similar profile to you but I'm older, opted to do IVF privately as we didn't know what else do. I sincerely hope you find answers. Wishing you all the best on your journey ✨️

Hi @Sierra26 I’m sorry to hear you are so frustrated, it’s infuriating isn’t it! I had an appointment with my doctor this morning to discuss options and she was surprisingly blunt - she just said I’ve had all the investigations and tests, and her advice was we just need to keep trying naturally and that NICE guidelines say to wait for 2 years and then we should be eligible for NHS-funded IVF (although she said waiting lists would probably add another 6 months to that). Anyway I said I didn’t want to wait that long, and said what if there is something wrong and we just haven’t found it yet (and therefore wasted time unnecessarily) and she couldn’t really give me an answer for that and just didn’t seem to be interested in exploring other potential causes. She was also very dismissive about IUI / Letrozole / progesterone and said there simply isn’t enough evidence to suggest these things make a difference if you are already ovulating, but that ultimately it was up to me. So think I will push for Letrozole in the new year. But I equally share your frustration and would be very interested to hear what your self management plan involves! It’s mad that I feel like I’m having to really push here and do the research / come up with suggestions rather than the other way around!