Diagnosed with PCOS

[Ijneb2023]

Hi everyone,

i am totally new to all this and looking for some (ideally recent, given NHS wait times since COVID) experiences with ovulation induction and possibly IVF on the NHS.

i am a 31 year old (slim, no insulin issues) female, and came off the pill in October after 13 years on it. I had a couple of bleeds, about 6 weeks in between, then nothing since February, and obviously no pregnancy. I used my private health cover to see a gynaecologist who did bloods and scans and diagnosed PCOS, and has recommended proceeding with my partner having a semen analysis, then drugs for me to induce ovulation which I will need to do on the NHS due to insurance not covering fertility treatment. My partner has his test next week, and I got referred to the fertility specialist today. This left me pretty down actually, I have been waiting over 2 years for another referral for my back on the NHS, so I dread to think what the wait times are like for fertility specialists!

does anyone have recent experience with the NHS? How long did it take to get referred for ovulation induction.

if we pay and go privately, what is included and how much roughly would everything cost?

furthermore and thinking ahead, if you were then referred for IVF (due to denen analysis or induction of ovulation failing or no pregnancy after over a year) how long was the wait list?

my worry with all this is I am 31 (partner is 40, but luckily for him it seems almost irrelevant what his age is!) and I remember reading somewhere the NHS cut off is 35. While this seems like a long way away, it doesn’t feel like it when you factor in the NHS waits, and that there is a whole process to try before any potential IVF anyway. This all makes me very nervous, and I’m someone that likes a back up plan or 2!

also FYI, we are based in Hertfordshire, as I know there is local variability to wait times.

hoping someone has some recent experience, in the absence of any I am imagining the NHS is a no-go with waits and I’m going to have to financially, emotionally and psychologically cripple myself to stand a chance of having a child 😢.

Thanks for reading, look forward to hearing from you!

Hi,
Sorry to hear you've been diagnosed with PCOS, it's a bit of a blow when trying for a baby. I have the same but thankfully found out before I started trying for a baby (took a break from the pill during lockdown and had no period for 6 months so got tested and PCOS was diagnosed). My GP was very supportive and said that we would be referred as soon as we wanted to start a family, no need to try naturally (I was 30 when diagnosed).

I'm based in the North West, so could be a different process and timescales, but if a timeline is helpful to get a rough idea:

I requested a referral via my GP in May 2022.
Received a letter about a month later saying we were on the waiting list.
July 2022 - my husband was given an appointment for semen analysis early Aug and I received an appointment for scan and bloods at end of Aug.
At my appointment I was told it would be about 8 weeks before the consultant would see us. I hadn't received anything after 8 weeks so rang up, got told it was a 12 week wait, still didn't receive anything so had to call again and eventually got given an appointment (I would advise being a bit pushy, I did request an explanation for the delay, they were adamant they hadn't made a mistake but when I rang they couldn't find my referral papers and then suddenly rang me back and gave me an appointment time on the phone so it seemed fishy!)
Appointment was end of Feb, we agreed to try Letrozole for 6 cycles then it would be ICSI.
I was able to collect the prescription that day and got started.
First dose was too low, so they upped the dose. I ovulated on second cycle but not third, currently in the 4th cycle TWW period now. We had a follow up with the doctor after our 3rd cycle and they have also started the tests we would need for ICSI too, so if get to the end of the 6th cycle there won't be any further wait for ICSI.

So for me, less than a year all in all from referral to starting treatment. It does feel like an eternity while waiting, but use the time to consider supplements (folic acid and vitamin D are essential for anyone TTC, you may want to read up on things like myo-insitol for PCOS too). Make sure your partner is also taking a good supplement and cuts back on alcohol, coffee, protein shakes etc.

Also, this sounds frivolous, but if you can afford it/want to, enjoy some time having nice holidays. Whilst I was waiting for my referral we had 2 amazing holidays in places with zika risk (didn't TTC for 3 months after) and I'm so glad we did as its hard to plan holidays around ovulation induction when there are scans and blood tests and sometimes you feel quite bloated.

Sorry for a v long post, but good luck with everything xx

Hi OP, I initially went to my GP in Feb after trying for a year (1 miscarriage last April). She referred me straight away and ordered my blood tests / husbands SA while we waited for an appt. Had my first fertility clinic appt in April, actually it would have been March but typically I was out of the country! So pretty quick for me.

After some more tests and a bit of back and forth I started ovulation induction end of June, so currently at the end of cycle 1. So I only had 4 months from GP to treatment. I realised I’m quite lucky, but it can happen quickly x

Hi both,

Thankyou so much for your replies, I am so grateful to hear your (actually pretty good and quick) NHS experiences so soon, I really wasn’t sure I would get a reply, let alone such useful/relevant ones! This has given me some optimism actually, even a year from referral isn’t too bad. I suppose you guys aren’t there yet, but what about IVF wait times? Any idea?

May I ask a couple more questions?

Which drug did they use for induction and why? Were there side effects?

Did they give you any specifics on how many women respond? My understanding is a large number of women still can’t ovulate with them?

Even with a response, is there a time limit (due to the drug, or just to move onto the next thing for time) before it’s considered a success/failure and you are moved onto other induction types or IVF? Just trying to figure out more best/worse case scenarios, as I’ll be 32 in Feb.

My partner has his semen analysis on Friday, which I guess is the first big step. My doctor did the referral as urgent, but I still intend to ring up the department when I can and keep on top of getting an appointment or cancellation ASAP. I suppose if it’s looking like a long time then I can opt for the private option but honestly I was thinking it was a total no go prior to hearing your responses so Thankyou!!

Hi @Ijneb2023 we haven’t discussed IVF yet so I don’t have any advice on that I’m afraid.

So I’ve been given letrozole for ovulation induction. They were also thinking about prescribing metformin if they decided I had PCOS, but my only symptom is erratic cycles so they decided against it. If they did decide on metformin then I would have taken that for 3 months before the letrozole.

With letrozole you take it on days 2-6 of your cycle. I read that taking it in the evening helps with symptoms so that’s what I did. I felt a little dizzy and had some hot flushes, but I pretty much slept through it so wasn’t so bad at all. Some women apparently also get headaches and nausea but I didn’t get anything like that.

I was scanned on day 16 (it’s usually day 10-14, but I think mine was a little later because of the weekend). But anyway it was good timing as they saw a nice big follicle and my lining was thick, so looked like I was about to ovulate. I then had a progesterone test a week later which confirmed that I had ovulated. So it worked perfectly for me! Worth saying that I do get a peak LH test every month anyway, but sometimes not until day 32+.

And by the way I’m 36 so in my eyes you’re still super young, but understand that it doesn’t feel that way when things are working against you! I’m just trying to take everything one step at the time and hope for the best ☺️

Hi,
Glad sharing experiences has given you a bit more optimism.

Re your age - 32 is honestly fine (I'm almost 33 and the doctor laughed a bit when I said I was worried about age, she said early 30s is still prime time), I know egg quality can decline after 35 but if you have PCOS your AMH levels (ovarian reserves i.e. how many eggs are in there) is usually higher than normal so you have plenty of viable eggs left.

Drugs - I take letrozole. Its considered best for women with PCOS, higher success rate than Clomid with less chance of multiple birth and Clomid can also thin the womb lining. I get a bit bloated taking it but not too bad, if you need norothisterone to induce a bleed first then I found the bloating from that to be pretty bad (I looked about 5 months pregnant!) Some women get a lot more side effects.

I think stats can be quite unhelpful as they always seem to be less than 50% for any fertility interventions which is demoralising. Try to focus on the fact that you will be monitored and they will adapt as they go. So for me, they didn't bother to start me on 2.5mg but went in at 5mg. That didn't make me ovulate so I went for 7.5mg and that has worked, they also added in a HCG trigger infection to make sure the egg definitely pops out of the follicle. The scans and blood tests help the doctors to tailor your treatment. Usually 6 rounds of letrozole is recommended, if you are ovulating with it.

In Manchester there is no further waitlist for IVF/ICSI, you just need to have some extra tests so its just the time to get those done and the doctor to review the results and then you start the treatment. Not sure if this is true at all hospitals though.

Hope the SA tests go well. My husband has slightly low morphology hence we'll be doing ICSI and not IVF if necessary, but it wasn't concerning enough that they felt we didn't have a decent shot at trying naturally.

Hey,

I had to make a profile & respond to your message as been searching the internet for people in a similar scenario to me.

I’m 30, also based in Hertfordshire, and been recently diagnosed with PCOS, confirmed via ultrasound and symptoms of super irregular cycles. I’ve today visited the GP and been able to get a fertility referral to start the journey. I did ask about timelines and she suggested ‘before but close to Christmas’, I don’t know how accurate that is though.

Please do keep me updated on your journey, and best of luck!

Hi Op,

Im also in Herts and have been on the ttc journey since late 2020.

It took around 11 months from 1st call to GP to get referred to the gynaecologist so there was a long wait there and a lot of me chasing and following up , I did manage to get a scan from my GP during that time where I had my pcos diagnosed ( I have zero symptoms and regular cycles) then I was given 6 months of letrozole, which did make me ovulate but didn’t conceive , had to wait a month or two after I had finished as they had no appointments to be seen again for next steps and then from there I had to wait for an IVF referral which took another 6 months to be processed and approved. So all in all around 18/ 19 months for me. If you get to that stage there isn’t much in the way of “ wait time” at the actual IVF clinic or at least there wasn’t at mine.
I think I waited a month or two to have my first consultation.
It’s a bit of a mine field and an emotional rollercoaster but you have time on your side but with the NHS the way that it is I would say sooner is better. Best of luck. X