NHS investigation results meeting - what to ask?

[SquawkingSeagulls]

Hi lovely ladies
After 6 months of tests, and 11 months since my GP referral I finally have my results meeting tomorrow with the consultant. It feels like a lifetime since we were referred (I guess they hope you get pregnant in the wait ).
So I know I have lean PCOS (the lady that did the scan told me this). DH also has low morphology. I’m guessing they will move us onto IVF, as I ovulate regularly and have very regular 26 day periods, so I’m not sure there is much point with Clomid.

What should I be asking tomorrow? I’m going to ask for my AMH results and what the next steps will be and timescales - but what else should I ask? I’m finding everything frustratingly slow at the moment.
TIA

They'll just talk through the results and make a recommendation for next steps ie ivf - there might be more tests they want done as part of the ivf referral eg HSG test if not done already

Note they may not have tested your AMH levels - it was always something you had to pay extra for even at an nhs hospital in my area

I’ve had an HSG, 3 ultrasound scans and about a gazillion blood tests. I don’t think there is anything left to check! I really hope we are making progress now because it’s been nearly a year since I was referred and over 3 years TTC. If I’d known we were going to be waiting this long I would have seriously considered going private as we only get 1 round on NHS in our area and I’m 34 now.
I had my first scan and HSG back in February, second scan in April and third scan in early June - every time I had a letter I thought it would be my review appointment and it was another scan!
The communication has been pretty terrible, I haven’t spoken to a doctor at all and have no idea of the process so hoping for some answers tomorrow. When I called to query the third scan I was put through to the nurse and she couldn’t see why it was needed but said if I didn’t go then I’d be taken off the list!

Hi @SquawkingSeagulls it's good you've had all the tests! I'd be annoyed too with this delay, eg why did they need to do 3 x US?!

It's interesting that they've mentioned PCOS, you generally need 2 out of 3 of these to meet he diagnostic criteria:

• Clinical Hyperandrogenism or Biochemical Hyperandrogenism (Elevated Total/Free Testosterone)

-Oligomenorrhea (Less Than 6-9 Menses per Year) or Oligo-Ovulation -Polycystic Ovaries on Ultrasound (>= 12 Antral Follicles in One Ovary or Ovarian Volume >= 10 cm3)

Do you have hyperandrogenism? If not you probably don't have PCOS. What was your AFC? I have a AFC of 34 (17 per ovary), so my ultrasound meets the last criteria but with normal hormones and regular cycles, I don't have PCOS.

If you have a high AFC then this will impact on the protocol, I had low dose stims. With a high AFC there is a risk of OHSS so you will need to be closely monitored.

I had 30+ follicles on each ovary on the first scan and 28 and 26 on the second (I think the rescan was to check the follicle count mainly). I have very bad acne and slightly raised testosterone, but my BMI is 21 and I have very regular periods (if anything too short - usually 26 days but last month was 23). I’ve read that too frequent periods can also be a sign of PCOS.
I could speculate that a scan sort of resets the waiting time clock so if you have a scan wait 2 weeks get another scan appointment for a months time you aren’t on the waiting list so to speak. Maybe I’m wrong - I don’t know anyone else going through the system so don’t know if it is a delaying tactic to reduce the number of patients. I had a friend that was referred in Jan 2020 and got pregnant in between the scan and waiting for results, I guess the delays do reduce the number of patients. She’s had her baby now and I’ve still not seen the consultant!

@SquawkingSeagulls ah you may well meet the diagnostic criteria then. I think if you're going into IVF then discussing the protocol and monitoring in relation to your AFC will be the most important aspect of your chat from what you've said. Getting around 12 eggs is the ideal situation, quite often people with PCOS end up with huge numbers of eggs but there is a high drop off of blasts, it's quality not quantity. And obviously reducing the risk of OHSS as much as possible is going to be really important.

So I had a very quick call with the consultant as someone had updated my number to an incorrect one so I had to be squeezed in after the clinic rather than having an hour appointment.
I need to have a hysteroscopy for a polyp and then we will do IVF. I’m not sure on the timescales for either, and I was a bit overwhelmed on the call (partly because of the stress of the wrong number and the rushing and also the surprise at the hysterscopy) so other than being told there was a short waiting list for the hysteroscopy I don’t know how soon after that I can do the IVF. With a bit of luck it will be November/ December time.

The consultant did say I should have a good result with IVF as I should get quite a few eggs but it was important not to overstimulate.
DH is totally unstressed about it all and is very much a it’s in the hands of fate whether it will be successful or not. He keeps on saying we are with the experts and they too want us to have the best outcome and it takes as long as it takes. I’d love to be as pragmatic as him.

That is the problem with IVF when it comes to PCOS, the risk of ovarian hyper stimulation. You will need to be monitored carefully to make sure this does not happen. I would think they are looking at IVF due to the low morphology issue.

I would not have a hysteroscopy procedure done under local, this should be Dione with general anaesthesia.