We have been trying to conceive since for 12 months and was referred to UCHL fertility clinic last December as I also have PCOS with infrequent periods (?3-4 per year). I also had to lose 13kg to meet the referral criteria for BMI - which I achieved (and very proud of myself).
I was told today our appointment is for October this year.
I feel so upset, I knew there would be lengthy waitlists but didn’t think 10 months from referral to first appointment. I’m also 34 this year and worried about age decline with fertility combined with PCOS is not a good prognostic factor. Also, first appointment isn’t treatment nor a guarantee we meet the criteria for NSH funded fertility treatment.
I’d like to go private now however my partner wants to wait for NHS appt.
Just feeling lost, sad and struggling to deal with the uncertainty. Any advice?
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Melsunshine
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I’m a patient at UCLH. Have you had any tests done via your gp such as AMH and to check your hormone levels? I went private for these tests but they also did them via the gp. You can do the tests for £395 at the clinic connected to UCLH if you can’t get them on the nhs it might give you a bit of peace of mind. How was your PCOS diagnosed? I presume you might know your follicle count but if thats also high you might have a decent amount of time (not that anyone wants to wait in this situation). I saw a specialist a while ago about PCOS and it was recommended that I take Inofolic Alpha as it restores ovulation in women who have the condition and improves egg quality. I technically don’t have pcos though and have always ovulated but i took it anyway.
As for your partner, I understand this too because my partner is also more relaxed about everything and happier about waiting. Our wait time was 6months before first consult and 4 until the next and then things moved quickly. Then there was a 5.5 month gap between transfers. It is quite long and I too am wondering about whether I can tolerate the nhs route for much longer as I have done 2 slow cycles and turn 38 this year.
Thanks for you reply. Sorry to hear of your fertility challenges too. Thanks for sharing time frames
I do not know my follicle count other than “sonographic features of PCOS,” from a recent ultrasound. Diagnosed with PCOS many years ago as a teenager via ultrasound and hormone levels (higher testosterone) and symptoms (hairy).
I have had all hormone levels tested required for fertility referral which excludes AMH as this is to be done at UCLH. Lower progesterone as far as I can tell. Slightly higher testosterone (expected in context of PCOS). I’m in 2 minds to get AMH privately… very anxious person in generally and as I can’t do anything with the result anyways as will likely continue with NHS pathway first. The more I know, the worse I can be sometimes! We also from healthcare background which is also sometimes not helpful!
Thanks for your suggestion - looks like it contains inositol which helps with managing insulin.
I think you know yourself best and so if you think knowing might just make you more anxious then definitely wait it out. Well done on your weight loss by the way, that can’t have been easy with the PCOS xx
Thanks for clarifying - sorry new to this! Sorry to hear of your fertility challenges and glad to hear you have a treatment plan in place. Fingers crossed for you. Thanks for sharing timeframes as I think this will help manage my expectations as I thought it would be quicker
Your reply number 2 is my situation.
I already know why I can’t conceive - PCOS and 3/4 periods a year is very unlikely to result in a natural conception. So just really frustrating with such a long wait time, on top of TTC for 12 months, all while getting older.
I know there’s nothing I can do about waitlists other than rant and complain… just adds to already a lot of emotions.
hi there Melsunshine , sorry to hear about your struggles to conceive, and the wait time. Unfortunately it does seem to be the NHS way, and even once you get that first appointment, there is more waiting for blood tests , nurse appointments etc. We had our first appointment with the fertility clinic in July, and first treatment was in November. There are also waiting times in between rounds depending on how many rounds you get with the NHS and whether you are successful with your first round or not (ie. For me, had first round failed in November, had to wait 4 months for this second round that I’m currently on, but I was lucky as I got a cancelled appointment - the clinic said the wait is up to 8 months between treatments for my clinic sometimes). It depends on how patient you are willing to be really. If this next round for me fails, I’m looking at going private alongside the NHS ! It’s a grey area as to whether local council allow it, but I can’t get a clear answer out of them, so I’m going to risk it 😬 Any qns though let me know! X
Just want to add to this. I was told by uclh that if I did any treatment such as an egg collection outside of what they were doing that I would lose my NHS funding xx
It’s good that they are clear with you at least - my local CCG or clinic can’t seem to give me a clear answer, and have sent me local NHS documentation that states in their Fertility Services Commissioning Policy, 'NHS organisations should not withdraw NHS care simply because a patient chooses to buy additional private care.' . So long as 'any additional private care must be delivered separately from NHS care', - so I’m quizzed them on this, saying this should mean I can do private alongside NHS, and now they’re just ignoring me and haven’t responded for weeks 🤪 So if they don’t email me back, I think I’m going to just take the chance in the near future if necessary. See how this next round goes and if unsuccessful, pay to go private whilst I wait for the 3rd NHS transfer. A friend of mine did the same and never got asked, so did them side by side.
Yeah they were really clear. I would love to do a private egg collection. I might go private soon anyway, the wait times are the last thing you need when you feel like you’re tight on time. I think if I were you I would take the chance and do both. X
How do you get answers on this ? I am currently emailing icb because I believe I am entitled to a third round. But might want to go private in the mean time.
I didn’t get answers sadly Cuppppatea , they never emailed me back. Here4ivfinfo can you let us know how your perhaps got clarity on this? Who did you reach out to to check with?
Thank you for sharing your journey and fingers crossed for you. I am truly amazed fertility treatment is funded on the NHS and very grateful for this. But also frustrated with wait times! It is very helpful knowing that this is typical of other people’s journey as well. I just haven’t known what to expect and probably thought 4-6 months to wait for first appointment, not 10 months!
Def focus on the coping strategies. I’d also (like someone else has said above) see what tests your GP might be able to help with in the meantime - AMH levels, Thyroid check, maybe read ‘it’s starts with the egg’ and ‘big fat negative’ books as there is so much you can do to prepare yourself and get in the best place possible ready for your NHS rounds x
Yeah I know the waitlist are wildly long but it’s completely out of my control unfortunately… I work in healthcare and have a lot of insight into waitlists and current pressures on the health system. I do really feel for the NHS currently, it’s hard being on the other side now. I will email to ask to be put on the cancellation list but don’t have much hope for this… Very aware the first appt will not be overly helpful and be sent for more bloods / scans which is such a shame after months of waiting.
I’m awful at waiting! Especially another 8 months!!!!! I’m also petrified of putting weight back on that I worked so hard to lose!! As BMI needs to be under 30
Hi Melsunshine - I hear you! I had a very long wait for first appointment and had one cancelled due to Dr strikes. I would say keep ringing for cancellations and get them to put you on their cancellation list (if they have one) as this saved a lot of time for me. I was due to be seen in October and ended up getting an appointment in June!
If you’re worried you’re waiting and might not meet the criteria, check which CCG you fall under, look at their website and check the criteria. At least by doing this you can make sure you will definitely get the funding.
Another thing that helped was that my GP was very proactive so before I got to consultant/clinic appointments I had already had lots of blood tests done, ultrasound scan and my husband had sperm analysis. This meant when we finally saw them they already had most of the info they needed and time wasn’t wasted sending us for tests. Sperm analysis might be worth asking for just to rule out any male factor issues.
Hope that’s helpful, message me if I can help in any way - I also have PCOS and I’m a similar age!
Thanks for your reply and sharing your story. Glad you got an earlier cancellation - will get calling!
Yes I’ve basically memorised the CCG criteria / GP cannot or will not refer unless you meet the first round of criteria ie BMI weight in range and all required blood tests incl male sperm analysis. I’ve also already had vaginal/pelvic ultrasounds which was attached to referral. And partner has done sperm analysis already which is attached to referral. They’ll have to do all the bloods again as they’ll be well out of date. My GP has been great to spur me and support with weight loss as I initially didn’t fit the BMI criteria and had to lose 13 kg. Which I have now, and now petrified to gain any weight as will be taken off the list / referral rejected on first appt.
Anything else you’ve done to help with PCOS symptoms and ovulation?
That’s amazing - I had to lose loads of weight too so I know how hard you must have worked!
If I’m honest, nothing I’ve tried has worked. I’m on a high dose of Metformin, I’ve tried inofolic alpha, all sorts of myo-inositol supplements but still nothing. I have to take norethisterone every 3 months to induce a period 🙈 so I don’t ovulate at all which is why all the waiting is incredibly difficult for me. It’s hard to keep trying when you know it’s not working 😭 I did discuss this ovulation induction with my consultant but he agreed there is no point wasting time with it due to OH’s low sperm count.
So I wish I could help, but unfortunately none of it worked for me 🙁 xx
Well done also for your weight loss - it’s really hard work! I was going to try myo-inositol and then talk to GP about metformin if unsuccessful. I do get few periods but so sparodic and no idea if I truly ovulate.
Hello. We are in a very similar situation. We have been trying to conceive for a year and went to our GP, she told us my husband would need to have a semen analysis before we could be referred. When we tried to make the appointment for that, we were told there was a 6 month waiting list. That's before we can even be referred, and then it could be up to a year more before we are even seen. I was crushed, as I'm 36 and don't feel I have the luxury of all that time. We made the decision to go private for fertility tests at least, so we can see if there is an issue. We are very fortunate to be able up do that. We rang up this week, have our fertility tests (blood test, pelvic scan and semen analysis) booked in for next week and a consultation the following week. It was all very quick and easy, in stark contrast to dealing with our GP practice.
It's a horrible situation to be in, so I feel for you. You are not alone. Wishing you all the luck.
UCLH patient here. GP referral to first appointment was about 7-8 months, the appointment came on suddenly with about 2 months notice after radio silence. I had given up on the NHS and started the initial tests privately with CRGH which is connected to UCLH (egg collection and transfer will be here while doing UCLH treatment). When I had my first NHS appointment confirmed I didn't pursue the private route further, which is lucky because they will withdraw funding. Upon first UCLH call it became evident that I was fast tracked a little because they were able to use the test results from CRGH. I say fast tracked, but it was another 5 months for a dummy embryo transfer test and another 3 months before IVF actually started. They won't do another baseline blood test or sperm test before starting even if the test is old. I did a Hertility blood test out of curiosity to check if I was declining as I was concerned I was waiting too long, but was pleasantly surprised that my AMH improved.
I would say if you do wait for the NHS, use that time to get your body as healthy as possible and your partner too. Well done for getting the right BMI. Keep it up and incorporate as many anti oxidant foods as possible and start on pre- conception vitamins and Co-Q10 if not already. Good luck!
Thanks for your story. Long wait for you too but glad to hear after that 1st appt it sped up a bit. I still can’t believe it’s 10 months for 1st appt - I had mentally prepped for 4-6months wait.
Thanks for the heads up re if private treatment starts, NHS stops. The logically part of me knows to wait for NHS pathway as it’s obviously very costly going private but it’s quite crushing waiting with uncertainty. I haven’t had AMH levels tested as GP will not do - they report only fertility clinic will. I looked at privately getting it done but it’s £395 which I am not prepared to pay. Plus the AMH result if it’s not in the range for funding might make my anxiety go into overdrive.
I don’t know what co-Q10 is so will have a google. Ordered some myo-inositol suggested by another user / started reading the book “it all starts with the egg”
Yes that cost sounds about right for a blood test privately. It's just a fraction of what private IVF would cost. I don't know if we made the right decision waiting, but we essentially lost 2 years. On the other hand, we'll have learnt from the two free rounds what doesn't work and so that if we did need to go private maybe that means more success?! I'm trying to put a positive spin on this while I await my first transfer. CoQ-10 (typo previously sorry) is supposed to help improve egg quality and was recommended by my doc. I'll check out the book thanks.
I just thought I'd add after reading an earlier response that I have PCOS and was also recommended inofolic alpha (containing myo-inositol) by the consultant at my ivf clinic. Although in my case I was ovulating so they didn't think that was the main issue (I also have severe endometriosis), they thought it might help to regulate things / with insulin resistance so may be worth looking into
Thanks for your message - I did order some myo-inositol as my testosterone is slightly elevated (expected with PCOS) and see if it helps with ovulation xx
Hi Melsunshine, I am currently doing nhs cycle i am 42 in July and no kids. You can start your private ivf and get ready in case you don't wanna wait too long for nhs. Private clinic can't say out about your treatment to anybody.. you just opt for it. All informations are data protected. Cos anything can happen like to us. After referal to special doctor what prescribed me clomid for 4 months wasn't successful obviously he said we are not entitled to nhs cycle cos my partner has got daughter..so we have to write emails to nhs and at the end the let us. But for nhs cycle special fertility doctor will let you choose just from certain fertility clinics what they cooperate with. It depends what district and town you live.
My cycle didn't worked out I was bad responder to drugs so I had just one egg and not fertilised. So no embryo..
My amazing nurse where I was going for scans rang around and said I am entitled to 2 cycle cos no embryos whatsoever...
So 2 cycle I've got longer protocol down regulation. We have got 5 eggs 4 fertilised and 3 made it to blastocyst. I wanted testing but nhs cycle didn't allowed it even I said we will pay... First fresh transfer didn't take in, now I had second frozen transfer on Monday but not best grade 5cc and last embryo didn't survive thawing..... we are going private straight after. And now I will tell them what I want . They can't say out. And I will decide fertility what I want.
You're 34 keep fit , go to gym walk ... keep busy. Prepare yourself mentally specially cos it's hard journey...
Firstly start reading book "It starts with egg" and start taking supplements straight away. Doctors won't tell you what to take..you do research. And joing groups ivf on Facebook lots of informations from other girls. Good luck with everything and baby dust to you. It's your life your decision. 💕
Thanks for your reply and sorry to hear about your fertility challenges. Wishing you all the best for the future.
Thanks for the advice / tips. I have started to read book suggested for extra advice. I think keeping busy is very important - I have just started a new post which I was reluctant to take given I thought we’d be having fertility treatment or pregnant but in actual fact it’s a perfect distraction as I’m very focused on this new role for most of the day rather than fertility!!
Yes I am keeping active and re focusing on healthy food choices. I need to keep my weight off / lose more. Doctors have told me my whole life my weight is causing PCOS despite being all different BMIs (healthy, overweight & obese) and makes no difference on my period cycles - it’s very frustrating. But I understand the evidence/reasoning behind it so deep breathes!
Hi! I am sorry to hear about the long waits. We did IVF on the NHS and spent a lot of time waiting for all the tests, referrals etc. At times, it was excruciating. On the whole it was worth it though because 'one round of IVF' meant one round of stimulations plus all the resulting embryos for transfer (with a maximum of 3). We have a baby from the second transfer and still one more transfer covered. I should have mentioned, I also have PCOS and recommend taking inositol, as well as doing some reading on dietary and lifestyle changes to help. I cut out sugar. A great read on fertility more generally is 'It all starts with the egg', I adopted a lot of the recommendations before my successful transfer. Very best of luck with the journey! It can be a rollercoaster but the goal justifies the means.
Hi lovely, i hope you're well. I'm very sorry about the long waits, I had to experience something similar myself, our first request to GP for referral was done in April 2022 and it took until Feb 2023 to see the IVF consultant, once we got there things moved quicker and started treatment in May 23. I've read from other posts in here that people in North London (UCL i think) have a very generous policy for funding, so from that perspective is worth checking and putting things into balance and see if it's worth the waiting, 34 is still relatively young x. It's also worth checking what's the funding criteria e.g. in our trust you couldn't have gone to private first and then come back to NHS, once you know what you'll be getting/losing you can make a better decision on whether to go straight to private. Maybe try to focus on the positives you'll have more time to prepare your body for it, my advise would be that you and your partner start taking the supplements (I think they also advise inositol for PCOS, coq10, omega 3, good multivitamins e.g. impryl ) , and do a diet focusing on the nutrients (E.g. Mediterranean) minimise sugar, ultra processed food, alcohol etc. I'm sure you'll be doing already a lot of this, but they say it takes at least 3 months for seeing improvements. The other thing I wish i had done is to push more into finding solutions for root causes, you could use this time to do further tests etc if that's applicable. Sending you all the best of luck, i know exactly how you feel, time is precious , but there are also things you can be doing whilst waiting , if waiting is the right choice for you xx.
Oh wow a year for an appointment! That must’ve been so difficult. Hope you’re on the right track now.
Yes I have started some supplements after doing some reading. Yes I know NCL have a more generous funding than some other London trusts. I’ll start doing some more reading (again lol) of the ccg criteria for my
The same happened to us… we have been referred in January and date of appointment for September ! I couldn’t believe it … I raised a complaint with PALS and to ICB to see if the delay could be shorten, especially because by NHS constitution they are supposed to follow 18 week policy… I will keep you posted if any of this works !
Good luck and a lot of thoughts for you ! This is not easy…
But I can confirm you can go private and if you do one round of IVF, NHS will still accept you for 2 rounds. I’ve contacted ICB North London that confirmed this.
I just wanted to let you know that I managed to get appointment earlier than initially planned in regularly asking the UCLH if they had any cancellations. From an appointment in September I get the appointment in March.
Same after for the urologist for my partner and the follow up call with the doctor, it was scheduled for July… in asking UCLH I managed to get those appointment in May.
I think the way they give appointment in the first place are completely random and after if you ask if they had any cancellation to have an appointment earlier and keep asking I am confident you can get your appointment earlier !
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