Fobbed off for 6 years, now too late?

[Schnauzermom]

Hi, new girl here, but I'm so lost and only just starting on my (possible official) fertility journey after the worst 6 years of TTC.

Me and my partner have been TTC for 8 years on and off (had to take 2 breaks due to positive pap smears and treatment) but sought help from GP 6 years ago for fertility due to 2 years unsuccessfully trying. Was sent for blood tests and came back normal, but still no luck. Went back and forth a few times with same results but no further tests done or recommended, except advice to use a diary to keep track of cycles and use ovulation kits to help time things right. Ovulation tests are all over the place, some months ok, others no LH, some no HGC or LH.

Fast forward 2 years of no luck and Covid lockdown, I had been speaking to a friend (who is a sonographer) who was shocked I hadn't been sent for further tests and recommended i go back and demand a referral. I went back to GP to find a new doctor had started in the practice who was quite frankly, horrific.
His advice was to ditch all diaries and ovulation kits immediately as it was causing an unhealthy obsession leading to stress which was probably the cause of the infertility, instead, i should be having sex everyday of the month, 2-3 times a day if possible. When I said that was unrealistic, he said I should 'just lay back and think of england'. I was horrified and it made me feel like something out of the handmaids tale. I was so angry but demanded the referral starting with day1 and day21 bloods to check fertility, an ultasound and referral to fertility clinic. He reluctantly agreed so I went for bloods.

After 2 months waiting for results the docs office said they were normal and no further action needed. I requested to see another doctor and had an appointment with a lovely GP who was genuenly shocked when I told him the 'advice' I was given. He was even more shocked when he looked at the notes on the system for the blood test I was sent for, as it was NOT a day1 and day21 test, it was a general liver and kidney function test. No progesterone test was ordered and neither was any referrals that I had asked for.
He immediately ordered a day1 and day21 progesterone test, made a referral to the fertility clinic and ordered an Ultrasound.
Problem is, I have only managed to get this one GP in 6 years to take me seriously this September... I turn 40 in December.
My NHS district does not accept fertility treatment for 40+ year olds, and none of the referrals have come through as appointments yet. Bloods came back as ok (P32, slightly low on folate). New GP has tried to push the referrals through fast track but it's now in the lap of the greater NHS gods.

I'm just angry, frustrated and heartbroken that all this time (6 years!) has been wasted trying to get past first base at the GP and now I finally am, it may be too late. It may seem daft and I am not belittling those who have MC, but every period feels like a loss of what might have been.
I still haven't got an appointment for fertility clinic so don't know what questions to ask to make sure no further time is wasted and I don't get fobbed off again as this is my last chance of help.

Has anyone else experienced similar?
What should I be demanding or making sure I do/recieve when going to the clinic for the first time?

Hi there , sending you lots of love.

I honestly understand your frustration.

We've been trying since around 20 years old ( I'm turning 37 next month)
I have pcos , had irregular periods since forever basically and only got diagnosed at age 33. We struggled to be taken seriously by gps and were never sent for any tests other than a semen test for him. After than there was no further action , your young keep trying , it takes time blah blah . I went back again in 2019 as I was literally about to crack up. I was suffering from severe anxiety and panic attacks , not sleeping ect my mind frame was honestly very dark as i knew time wasnt on my side. My periods completely stopped and I finally got a diagnosis of pcos and my gp told me she was going to refer me to a gynaecologist as time was ticking on.. funny that isn't it. I went over 2 years without a period and it was such a distressing time for me to be ignored. Now I only have 1 or 2 periods a year. After 2+ years I finally got a referral to see a gynaecologist in March 2022 and they have literally wasted 9 months of my time. Ordered me to go take day 2 and day 21 blood test.. knowing I didn't have periods . Luckily I had a period in May and managed to get the tests done. Like you all I had done was a kidney and liver scan. Went to an appointment they told me we cant find your results come back in 2 weeks, waste of time travelling and time off work .. tried to get an appointment and they told me were fully booked until September. Nobody would give me my results so we rung every day until we finally got a cancellation. Got an appointment in June, they had me booked in for a smear test , and I was given a firm warning not to be wasting their time go get that done at a gp surgery.. I didn't go there for anything other than my results. Idiots. Anyway this was third different gynaecologist I saw and she prescribed me clomid and sent me away. 2 weeks later they sent a instruction leaflet with completely different directions , and also I couldn't take that medication anyway since It had to be taken on a period and I wasn't having regular periods which they knew. I tried to get an appointment and explained to booking they've given me medication knowing I can't take it and also gave me different instructions. Booking told me I couldn't have another appointment that I have to go back and take that problem up with my gp. I phoned my gp and my gp told me I shouldn't be coming back to them about this as I've already been referred. The gp had to contact the hospital consultant to prescribe me medication to bring on a period. By the way we had such a hassle with pharmacy losing both prescriptions. Our first took a month to get the prescription and second took 3 weeks. After we got the medications we needed , his sperm test came back poor and lab said we needed to be referred to actual fertility clinic. Why our gynaecologist prescribed us the medication without even having received both our results I don't know. We've been sitting in limbo since June not knowing what we're supposed to do. The whole thing has been a joke. Very Luckily that gynaecologist retired and the new doctor at hospital was going through her files and called us in after reading ours. This doctor actually had an interest in fertility and he did more for us in one day that my last consultant did in 9 months. He gave me a scan of my ovaries and womb there and then , which my last doctor wouldn't give me a scan and he's organised a dye test which I should he having next week. He also prescribed me progesterone medication long term so i can have regular periods. He advised us to hold off on clomid for few weeks as hes concerned there may be an issue with one tube and I may need a larcopsy surgery before ivf . If my first doctor had just scanned me before now I wouldn't have wasted 9 months and they would have spotted this problem before.
We are due to be called to the fertility clinc next year but even then waiting lists here are upto 2 years and here its only one eligble ivf cycle. It really shouldn't take this long to access fertility treatments.
Everyday I struggle with the pain that I may never have children at this age and Its truly heartbreaking. I get so angry at the fact It's taken so many years away from me.
Do you know which clinc you've been referred to? You can ring them and ask them what the average waiting time is. Also you should have the option with them to pay for an initial private appointment to speed things up then they will put you on list for nhs treatment straight away. That's what our clinic told us anyway but we haven't been able to do until I have my hsg test to know if I'll need surgery or not beforehand.
You mentioned some months your not having an lh surge so it may be that your not ovulating every month. Did they confirm this with your day 21 bloods if your ovulating or not ?

Sorry for the super long message but I wanted to share my experience and let you know your not alone

I am so very sorry to read both your posts. This is so sad. Disgraceful.

I got fobbed off re a shoulder operation. And also HRT. But not as badly as this. I'm so sorry for you.

So sorry to here this MK85, that's a long time to have to go through that and 2 years waiting list sounds soul destroying.
I was on dianette and cerazette from a very early age (due to agonising periods starting at 9 years old) for, what I later found out, far too long in my teens without a break (about 8 years) so my gp at the time sent me for pco scan in 2009 but came back negative.
The no LH is showing about 6 out of 12 cycles on my home over the counter tests but the bad GP said ignore the tests as they are not accurate and don't show low surge levels or I'm taking the test at the wrong time of day.
The blood test I had recently was during a good month when I had a LH surge so didn't show anything wrong (my progesterone level was 32 which is apparently normal range too)
I don't know which clinic I've been referred to as I live on the border to 2 counties so could be either, and only referred in September so God knows the waiting list. Here, we are only allowed 1 cycle of ivf if under 40 years of age, then nothing after 40. We can't afford to go private.
Does anyone know if fertility treatment criteria is based on if your referral was received before your 40th birthday or age at the point of receiving diagnosis and treatment?
I'm residing to the fact that I accept I'll never have kids of my own.

I’m sorry to hear this. We had the situation that we weren’t eligible because my ccg didn’t fund IVF for anyone and then they changed their rules but didn’t advertise it- so by the time we got into the system it was too late, my AMH was too low for their criteria. We had one private round of ivf which failed and we have no children and never been pregnant (one ?chemical and that’s it). It’s shit.

@Schnauzermom I'm almost certain the criteria is dependent on what age you are when treatment starts.
My advice is start being more forceful and take control as if you sit around you'll honestly never get anywhere with regards to fertility treatment on nhs. Start being more persistent and you'll honestly see how much difference it makes . Don't take no for an answer and complain every opportunity you get about how youve been treated. . Your friend was right in persuading you to go back and demand a referral. I honestly think thats what has turned things around for us and actually got things moving a bit now.
Is your partner supportive? That is the key so you don't feel your doing things alone. I couldn't do it without the support of mine. He's really stepped up these past few months and took the reigns making appointments ect for me . We're the only ones who don't have children so I don't have any friends or family to turn to who can understand this struggle other than him.
Ring your gp surgery and tell them you want to know which clinic they've referred you to. Then you'll know which side of the border your on , as each may have their own age criteria. Then ring that fertility clinic and ask them the current waiting list times for first time appointments it'll give you a general idea