Fertility Appointments and Beyond.... the journey continues

@Juno231 I was just referred to my local hospital though, they don't have any assisted conception services or even a reproductive medicine unit, it's just a local gynaecology department and mine was inside the hospital's maternity ward (that was fun, being surrounded by pregnant women). So I need to be referred on to another hospital now which has an actual fertility clinic to get onto their IVF waiting list.

@acaciabluebell my referral to ACU/fertility clinic was just called gynaecology in all the paperwork. In a lot of hospitals I think they're one and the same. In most CCGs the 2 year mark is usually for IVF and one year mark for further investigations (done at the fertility clinic) so it sounds like you've been down the right path so far to me?

@dogmam I'm so sorry to hear about your mc, it's so shitty this journey and so unfair 😞

@thislittlebird really appreciate your advice. My doctor seemed confident that my progesterone 'just needed a little boost' and was sure that Letrozole would do that for me, but my first cycle my progesterone only went up very slightly from 23 to 29nmol. Which is good, don't get me wrong, but most people on medication get numbers that are much much higher, and I've read online that 45+ is ideal. I think I'm definitely going to ask about trigger + progesterone support for future cycles. I expect I will probably do up to 6 cycles of Letrozole while waiting for IVF to start. R.e NHS referral my experience was very similar to yours, but can I ask why gynae dismissed you?? That seems ridiculous...

@Juno231 @dogmam Thank you both, I had absolutely no idea GP could actually refer to the IVF clinic. When I was first asking for the referral last year, my GP was adamant that "gynae" was the same as the fertility clinic so I just went along with it. Looking back though, I had only been trying for about 15 months at that point then so wouldn't have met the CCG criteria where I live which is 2 years TTC.
We've passed the 2 year mark now so I wonder if I could ask my GP to refer me if my consultant appointment doesn't go well later this month. I found a list online of the NHS IVF clinics which do treatment for my CCG - do I just pick one of these and ask to be referred? Or would I be able to ask for a referral anywhere - I know some people get their treatment done at a private IVF clinic but with NHS funding.

[quote PurpleUnicorn01]@dogmam im genuinely so sad at your news.[/quote]
I second this.

[quote dogmam]@thislittlebird he's only had the standard SA done, twice and the motility is the issue at 10%. Count is good, above average. He actually had a varicocele removed when he was a child so had surgery for that, and has since had a few small varicocele over the last few year, before ttc. We mentioned them to our clinic when investigating and the consultant said no point getting it removed as can do more harm than good. A few weeks ago he was having pain so is waiting for a urology appointment to come through, hoping they'll maybe have some insight about fertility too but it's just the normal urology department so not sure. There doesn't appear to be any male fertility specialists in the north east where I am so I feel a bit stuck with extra tests, or where to turn to also don't want to pay £££ just to be given 'advice'. What happened with your appointments with Dr Ramsey?[/quote]
@dogmam Was it 10% both times? DH was 9% and 14% the times the GP did it. Mr Ramsay didn't do a lot, he examined him, ran some tests and did an US. He said my dh's varicocele was so small it wasn't causing a problem, other tests were ok. But at the point when we saw Mr Ramsay he'd been on impryl, ubiquinol and more for 5 or 6 months, and his motility had increased in the results of the tests he ran 26% (I think) and morphology 8% (previously 3% ish). Obviously we haven't had one done since then as the ACU accepted that result, so I don't know if that's been a consistent improvement, we'll find out in Feb. However, the DNA frag was ok, he had 0% high frag which was great. If you want to skip the physical part of the consult you can order the COMET test online as far as I'm aware, to see what it comes back with.

So the only thing he really did for us was 'clear' us as ready for ICSI, if that makes sense? I think if the results had been worse he would have done something else like told him to go away and take something for a few months.

@dogmam I hear you sista! With the ivf shitshow. I literally almost cried after my first appointment thinking I reallllyyyyy can't be dealing with these damn injections and emotional rollercoaster/ anxiety again, followed by if its negative at the end il be gutted but if its positive il be having the worst anxiety until 12 weeks ever.

@PurpleUnicorn01 Aw bless you. I deffinetly get the feeling of emptiness too. For me though my sadness and numbness are mainly about having to go through this process and everythung that comes with it again and not be done with this whole TTC/IVF shitshow. Obviously I'm sad for the baby/pregnancy I've lost too but I never let myself get attached in a way where I felt 'connected' to this particular baby/embryo. I'm just so over living through fertility treatment I hate that it's taken over 2 years of my life.
I've got everything crossed for this FET for you. I think I remember you saying you've got a few frozen so I just hope they pick a good one!

@thislittlebird he's only had the standard SA done, twice and the motility is the issue at 10%. Count is good, above average. He actually had a varicocele removed when he was a child so had surgery for that, and has since had a few small varicocele over the last few year, before ttc. We mentioned them to our clinic when investigating and the consultant said no point getting it removed as can do more harm than good. A few weeks ago he was having pain so is waiting for a urology appointment to come through, hoping they'll maybe have some insight about fertility too but it's just the normal urology department so not sure. There doesn't appear to be any male fertility specialists in the north east where I am so I feel a bit stuck with extra tests, or where to turn to also don't want to pay £££ just to be given 'advice'. What happened with your appointments with Dr Ramsey?

@dogmam im genuinely so sad at your news.

@dogmam my friends and family did know and were supportive but i feel like no one understands exactly how empty you feel after a miscarriage. Im having an FET as had an embryo left ive just finished down regs x

@dogmam only a few days ago, ok yeah that makes sense to give it time. If you have time to kill then more tests is a good plan. have you done the dna fragmentation on your husband? I don’t remember what ones you’ve had. My husband had that and it was ok despite his motility issues, but I’ve seen people with normal sperm results come back with bad results.

@PurpleUnicorn01 thanks so much. I know you've also been through this, 12 weeks must have been so hard. Yeah that's something to hold on to, that I can at least get pregnant, i guess it's just waiting for a better embryo to come along. Did you tell any of your friends or family? None of mine know about ivf never mind being pregnant so I haven't told anyone about the miscarriage. I've been so close to feeling like I need to tell someone but then it's oh by the way I need ivf.. oh and I was pregnant.. oh and I've misscaried. It's just a lot to have to explain, so I've found that hard.

@thislittlebird thank you. Very shitty indeed. I'm not too sure when I'll go again. I only had the surgery a few days ago and the follow up appointment is apparently between 6-8 weeks, then it'll be waiting for CD1 to see if I can get booked in. My clinic makes you ring to see if there's space so it's just a wait and see thing. I'm tempted to push for some more tests though to rule out anything else going on with me, just with having both FETs technically working..

@dogmam yeah, that’s right. I’m trying to eat healthy, more protein (90% veggie), take my supplements and do regular exercise leading up to it...so I feel like I’m doing something and to make up or Christmas sins. Cycle is due to start 25th or 26th Jan.

Just bought some decaf tea too to try to cut back a bit :/

The other thing I’m waiting for is this 2 hour prolactin test. Speaking to a GP on the 5th to order it. Guys didn’t seem too bothered when I told them I needed this.

@thislittlebird not long to go for you, are you jist to ring on CD1 in Jan?

@acaciabluebell welcome. My GP after doings bloods and SA referred us directly to the fertility clinic. I would suggest you ask your GP to do exactly that. A lot of GPs just follow pathways when it comes to referring on, not just for fertility, for anything, and because they're not all clued up on fertility I think they automatically jump to gyne so I would jist ask specifically for a referral to X clinic. Good luck!

@CuriousAries good luck and hope you don't have to wait long to get going with everything.

@Kay00 it's interesting to read everyone's timescales, I think it varies depending on what clinic you're at, never mind what city you're in. I've been really luck I think, referred after a year of ttc and started first round after 6 months of investigations. Interestingly, at my clinic which treats both private and nhs patients, both are in the same queue, so it's not faster if you're paying.

@PurpleUnicorn01 good luck with your upcoming fet. What protocol are you on?

@dogmam oh no, I’m so sorry to hear that, numb must be an understatement. This is truly the shittiest of journeys. When are you anticipating your next cycle will begin? I’ll be happy when you and all of us can alight all these buses x

@dogmam im so sorry for your loss. I know how heartbreaking it is. The exact same thing happened to me only I didnt find out until my 12 week scan. Its a heartbreaking journey. We are going for our second round now. I don't think there's ever a 'right time' to go again as its way more scary. Thinking of you. Sending you love and hugs x the only mildly reassuring thing the Dr said to me was that its easier in terms of getting pregnant afted a miscarriage as your body knows what its doing and also its a positive thing is that you can get pregnant. When the Dr told me that it didn't heal the heartbreak but it did make me feel a bit better about the future.

Hi ladies, haven't been on in a while as between christmas and new year, have been going through the devastation of misscarying our ivf baby. At 7w4d I was scanned and it was confirmed no heartbeat, so I decided to opt for surgery to 'remove the pregnancy' at 7w5d. Feeling so sad, numb and just super defeated that out first round of IVF has resulted in both a chemical pregnancy and now a miscarriage. So it's onto round 2, we are just waiting for a follow up appointment to discuss if we will change protocol for next time as it'll be a full cycle from scratch as we only had the two frozen. It was early Jan last year that we had our first ever appointment with the clinic so feel like we've taken 1 step forward and 2 steps back. But we go again so back on the bus!

@Juno231 my gynaecology referral was the local hospital (in Kent), so definitely not the fertility clinic in my case. I thought it would be at first based on experiences I’d read :/

@acaciabluebell hi! I think the standard seems to be GP referring you to a fertility clinic/assisted conception unit (often just called gynaecology?). They can refer you at the next appointment if you meet the criteria (in my case that meant trying naturally for 2 years, or having something preventing natural conception - in other areas they might make you do 3 rounds of IUI first!), it doesn't need to be a face to face meeting. The viral blood tests usually get done after the referral has been approved but before all the IVF stuff starts. At least it did for me!

@acaciabluebell I was going to reply to you but didn’t know if this was helpful. I was going to ask if you were private or nhs and if you were offered a trigger shot? I was private, did Letrozole + trigger shot + progesterone and three scans to decide when to trigger each month. Not cheap, but it did the job of making me ovulate. My progesterone went from 10 to 108! So I will assume that’s 2 eggs being released + cyclogest. I worked out when I had ovulated myself with OPKs and symptoms, plus luteal phase length from cycle one, then booked in a blood test to confirm, and it was about three days after my trigger and clearly I got the right day with a result of 108.

Obviously without a trigger it’s more guess work but the signs were there and I responded the same way each month and patterns would emerge. It didn’t work for me, but it does for lots of people, including on threads I’ve been on.

@acaciabluebell hi! Funny to see you here because I almost replied to you on your Letrozole clomid thread and then deleted! I’ll say what I was going to say further down on here instead.

I think we’re quite similar in our results, bar the low AMH, mine is high, but my old GP referred us to gynaecology at the local hospital because of my low progesterone results (17 and 10). It’s so damn slow with gynaecology in my neck of the woods. It took three months to wait for them only for them to tell us to piss off. Didn’t even offer clomid. Ridiculous and a waste of our time, but most people don’t seem to have such a shit experience.

So my understanding is that GPs see you and refer to gynae in the expectation they’ll assess the best route, rather than straight to the fertility clinic. They might offer clomid for six months etc. That’s my best guess anyway, it didn’t happen for us, and the reason my new GP referred us directly is because a private doctor had seen us after the nhs gynaecologist told us we wouldn’t get any help (despite me possibly not ovulating and my husband having 9% motility 🥴) and the private doc made a case for us that my GP was happy with. I’m not sure if some areas refer without such a letter, not entirely sure if it’s a CCG variable.

I’ve heard of people having video calls to do the funding application, and mine was done without even seeing us, just emailed to us on the back of the letters. So it might be possible they’ll do funding too at the same time. Can you ring the administrators and find out what it’s for?

The HIV and Hep bloods were done when we got to the nhs fertility clinic for the first time from what I recall, that was a few weeks after the funding was approved. We’ve got to have them done again before we start ivf this month. It’s taken a year from my first private fertility check up, and 17 months from my first nhs fertility tests with the GP to get this far. Very painful.

I’m scared my phone will refresh and I’ve typed a lot so I’ll post this then reply to you about Letrozole.

Hi everyone, I have been reading this thread and thought I would also jump on as there's so much useful information here. Me and DH have been trying for over 2 years now. First spoke to GP in January 2021, had blood tests, scans and SA, referral sent off in March 2021, first appointment with Gynae specialist was in September 2021, where we were told we would need IVF. Was sent for a HSG in October and booked for a follow up which is later this month (January 2022). As you can see it's been absolutely ages and so much waiting around especially for the gynae department.

I've been reading some of the posts and it seems like GPs can refer people directly for IVF? I'm so confused because what was the point of my GP referring me to gynaecology then? Or does it depend on your CCG? Also, my appointment on 19th January is a telephone follow up appointment which I assume is just to discuss my HSG results. I am desperate for them to send off my IVF referral but is it likely that would happen at a telephone appointment or does it normally happen at a face to face appointment? I was weighed etc in September to check BMI but I often see people talking about having bloods done for HIV etc which I have not had.

@juno231 that's a quick turn around too, this gives me hope! Thanks!

@beckyCarlos it'll be hard for her to fathom that this is your step #112 in badgering the NHS into helping you and that it's so hard to keep trundling along :(

@juno231 thank you I think she meant well 🙄 or at least didnt quite realise what a bashing it felt like. She was a nurse so in some ways it's fab, shes offered to help with injections if I'm nervous etc, which is amazing, but I think I never realised how...I dunno how to put it...'out if control'? It can feel once you've shared things? I'm very much a 'put it in a box till it has to be dealt with' person, might not be the best approach but it works for me, and sometimes other people can open the box when I'm not ready and I dislike that 🤣