Ivf question (stage 3-4 endo)

[Ejl2688]

Hi all,

I have some questions reg IVF and wanted to see if anyone have had a similar experiences/ know about it and can help. Me and my husband have been trying for a baby for a year now without success, I was diagnosed with stage 3-4 endo 3 years ago when I was 28, and we have just spoken to our GP to try and get on the IVF list, they have booked me in for tests and I just wondered if anyone know how long the process can take? From getting blood drawn, tests done, to actually injecting hormones to mature eggs, and then putting the embryo back in the uterus. I’m turning 32 soon and know my clock is ticking, so just want to see how long of a wait it will be and whether better to go private if the NHS takes time.

Thanks and take care everyone.

[wanwood]

In my area there is a rule that an entire year has to pass from referral before starting treatment on the NHS. You should be able to look up the NHS IVF funding criteria for your particular area (CCG, trust, health board, whatever it is in your part of the UK).

If your tests come back with no explanation for the infertility, they may ask you to wait an extra year before putting you on the IVF list. However in my case it was clearly related to the endo so this didn’t affect me. If you’ve had surgery and had the all clear, I don’t know if that would put you back in the unexplained category or not if nothing else was found.

I needed to have surgery for the endo before I could go ahead with IVF. That entire process took more than a year, so the mandatory waiting period didn’t affect the timescale.

Also it depends on how many cycles your area will fund and whether having other cycles will affect your NHS funding. In my area, it is possible to get on to the IVF waiting list and then have 1 private cycle while you wait without affecting the funding for up to 2 subsequent cycles.

Hope this helps and all the best! xx

[Ejl2688 in reply to wanwood]

Thanks very much for your response. I guess I will have to see what the tests say after they come back, and what the doc say, really hope it doesn’t take more than a year as I feel like my biological clock is ticking day by day and the longer I have to wait, the less likely I will get preg. I feel like my endo is now coming back slowly, but I don’t want to have another laparoscopy again since they couldn’t do much the last time. (My bowel, ovaries and uterus all stuck together) and so requires a larger operation if I were to operate. This is going to be a very long journey to get my much wanted baby

[wanwood in reply to Ejl2688]

See what happens when your tests come back but it certainly sounds like you have reason to be referred straight away because of the unresolved endo adhesions on your ovaries, and I doubt your GP would think otherwise.

If you haven’t already been told that you should be ok to try to conceive with everything stuck together, you could consider paying to have a private consultation with an endo specialist or a fertility specialist (make sure your notes are sent in advance) to check whether you would be in a position to go ahead with IVF without further surgery. I know adhesions are meant to stretch in pregnancy so it should be fine, but I’m just thinking of ways you could anticipate future issues and delays.

On the age thing .... after 4 years of TTC and 2 laps, I was nearly 36 when I finally started IVF treatment and it was successful. So yes, the clock is ticking, and you need to be very proactive, but when you already know you have a condition that impairs fertility, age is just one factor and it may not be the most important one.

It’s so tough, isn’t it. I think it’s good that you’re prepared for a long journey because you might be pleasantly surprised, but if it does take a while at least it was expected. There are usually good outcomes for women with endo with IVF. All the best and hang in there xx

[Ejl2688 in reply to wanwood]

Thank you for ur reply again. I’ve had some tests done today (blood tests, ultrasounds, and urine etc) so at least I feel like I’m one step closer. Not sure what comes after but we shall see. My first blood test came back saying I might have a trait of Thalassemia hence the second blood test today. Kinda got me worried now but there’s not much I can do until the results come back. X

[wanwood in reply to Ejl2688]

Glad you’re making progress at least. Fingers crossed for good news! x

[Court_88]

Hi there

Sorry to hear you’re in this boat too. I had exactly the same story as you- after 1 year I got a referral from my GP in Jan 2019 to both the fertility team and the endometriosis team (the guidelines are they can refer you to fertility after 1 year of trying). I got my endometriosis appointment first (referred in jan, appt March), and they agreed they didn’t want to operate and suggested straight to IVF as I was stage 4. I got my first fertility appointment sometime in May, and had my egg collection and embryos frozen in November 2019. I had a failed frozen embryo transfer in February and am now waiting for my next. It’s a tough process, but once the ball starts rolling it does feel like everything goes quite quickly - and actually sometimes waiting in between and really preparing your body for what’s to come might be the best thing.

Hope that’s helped and hope you’re doing ok, feel free to message me if you need anymore info

[Ejl2688 in reply to Court_88]

Thanks very much for your reply. So it took you around a year and a half before you got your eggs collected? Did they say why your first try failed? Does that count as one IVF cycle? (I think NHS only funds 3?) Yes, I guess the waiting and preparing your body is the best thing to do Cos at least you know it’s happening, even if it is slow. I wish you all the best. Hopefully we will both be successful soon xxx

[Court_88 in reply to Ejl2688]

Oh I really hope so too. Yep I’m in London and my trust will fund 3 cycles, so that does count as one so two left. They just said it was bad luck - and to keep going with the transfer of the frozen embryos that bit has been hard for me cos I don’t know what to really do to make me feel better about the next round. So it took from my GP referral in jan 2019 to November 2019 to get my eggs collected (and I had been trying for about a year before that).

I hope so too, good luck too and I hope you are one of the lucky ones that falls pregnant along the way and doesn’t need it anyway!!

[Ejl2688 in reply to Court_88]

Fingers and toes crossed 🥰xxx