Donor Eggs and the NHS 🥚 Advice needed! How to advertise for a donor?

[FoxNOtter]

Hi all!

Apologies about the length of this post! Thought it would be important to apply some context to our situation.

I (33F) and my partner (35M) have been TTC since April 2020. Long story short, we were referred to the Wales Fertility Institute (the Neath Port Talbot Hospital branch) for IVF in July 2023, after failing to conceive for over three years (it'll be four years come April 2024)

Blood tests showed an AMH of 4 and FSH of 11.6 for me. We've been granted NHS Funding.

We were told the likelihood of IVF working with my own eggs was 5%. Despite this, we went through the first cycle; I guess for us we didn't want to regret not trying. I was put on the highest possible dosage of Meriofert that the clinic could allow and surprisingly, I had no unpleasant side effects from Meriofert.

Despite the poor prognosis, we did in fact make it all the way to the 2ww; however my result on test day came back negative. We grieved and then waited patiently for our follow up appointment.

In that appointment, the Doctor explained that I now have confirmed Low Ovarian Reserve. On top of that, we were told that Egg Donation would be the only viable option left to do our second (and final) IVF Cycle.

He told us that the treatment would still be NHS funded. 

But the record scratch moment for us came when the Doctor then told us; 

"You would have to find your own donor; the NHS had no such egg donor register."

We were taken aback.

We were also told that our donor would also need to be able to travel to the Wales Fertility Institute at Neath Port Talbot Hospital for all appointments, blood work, treatment etc. Which has basically narrowed our donor search to the local area of South West Wales, notably Swansea/Neath Port Talbot etc.

He also mentioned Implications Counselling and that we would get it sooner rather than later. That follow up appointment was in November 2023 and we've not received any support or update from the Counselling Team. The OH and I are convinced at this point, that they won't start Implications Counselling until we find a donor.

We initially considered family and friends as potential donors, but scrapped the idea after further discussion with said family on the complexities that could bring. So we're now looking towards altruistic egg donation.

Here are some questions we would like some advice on:

-How exactly do you advertise for an egg donor? Newspapers, Magazines etc? Or is there another method?

-How long did you have to wait until a donor answered the call?

-How long did the process take?

-Realistically speaking, what are our chances of finding a donor?

Would love to hear experiences from those who were/are NHS Funded and have been (or are) in a similar situation 👍

The OH and I are trying to wrap our heads around it, so any advice would be super appreciated.

Have a lovely day ❤

[FoxNOtter]

Also forgot to mention this:

Unfortunately, our Clinic will only allow our donor to have treatment at the same clinic :/ So any suggestions for frozen eggs from abroad are a no-go sadly.

We have thought about going privately in the past or going abroad, but for us personally, we feel spending thousands of pounds on what ineffectively is a gamble, even when a DE is involved, is a LOT of money, especially during the cost of living crisis. Don't get me wrong, if you're more than happy to spend the money for private treatment, more the power to you ☺️

But we would rather save that money aside either if we're successful with pregnancy through finding our own DE locally or if that fails, having the money aside ready for a future fund for a adopted child to give them the best start in later life.

Plus, my OH hasn't flown abroad for many years for anxiety related reasons, so going to a clinic abroad might be a no-go too.

Plus, we are members of the Donor Conception Network, but many of their members use private treatment, so any advice from folks who've ventured down the NHS Funded Route, would be super appreciated ❤️

[TT82]

@FoxNOtter hi, sorry to read about your struggles! I don't have experience with NHS cycles, but currently going through third ivf OE (we need PGTA due to age and mc), but so far uneuploid embryos. I am researching DE route, though have genetic kids.

What puzzles me is that they advised you to use DE with your AMH! Maybe it is lower for age but definitely not low for ivf! I read here lots of stories with much much lower. You are young and even if you get 3-5 eggs, most ir at least half will be good. I am not against DE route, just maybe have second opinions with abroad clinics or in the UK private?
In Czech Republic (i had considered them and had a few consultations for free), treatment much much cheaper, they do duo stimulation etc. Maybe your DH could freeze sample and he doesn't need to travel?

Regarding DE, would your clinic consider London Egg Bank? It is UK based. Also try Altrui agency, I read here very positive feedback.

Good luck with whatever route you decide! Xx

[FoxNOtter]

@TT82 Hi there!

In hindsight, I should explain more about my AMH Situation, as well as my general repro health.

My AMH:
My understanding is that different clinics have thresholds in terms of what they consider low AMH, High AMH etc. 

For the WFI, 4 is considered a low AMH. I believe the NHS and local health boards have some weigh in on these figures too.

Plus, during my first IVF Cycle, I only produced two eggs from one ovary through Meriofert. The other ovary gave up the will to live. This did result in two eggs being fertilised, but only one made it to embryo transfer and sadly, it did not stick.

[FoxNOtter]

@TT82

My general repro health:

I also do have an extensive history of irregular periods (that comes and goes), as well as some pretty excruciating ones, that render me incapable of doing anything. Basically if I could envision what being in active labor was like, the pains are akin to that.

I should note my periods during IVF were pretty normal and easy to track during this time.

As I type this, I'm actually awaiting a consultation from the GP, as since November, my cycles have been irregular:

56 Days (Nov 22nd-Jan)
30 days (Jan 17th-Feb 15th)
21 days (Feb 16th-present)

I've added my analysis page from Clue on here just so you can see the variation.

I'm fearing giving my Low Ovarian Reserve, as well as cycle variation, my body's resistance to Meriofert and my general difficulty to conceive, that something more is at play here. Perimenopause, undiagnosed PCOS or Endo? Who knows?

[FoxNOtter]

@TT82

More info on our appointment with WFI:

When we had our appointment back in November, we did contest against DE initially, as we wanted to try with my eggs again, but the Clinic wasn't for budging when it came to our request. We were told DE was the only viable option.

Any appeal against this, would have resulted our case being presented to the WFI Board and whether our IVF Treatment would be continued to be funded by the NHS under my own eggs or cancelled outright. I suppose they didn't want to take the financial gamble.

Given recent news about the clinic, I'm starting to understand why:
nation.cymru/news/concerns-raised-about-future-of-nhs-fertility-services-in-wales/

(Ironically, this meeting took place three days after our appointment. Go figure.)

[FoxNOtter]

@TT82

About the London Egg Bank:

Funnily enough, the DH and I did check out the London Egg Bank a few weeks back and did email the London Women's Clinic, the sister of the LEB about the possibility of using their register. Turns out they would only allow us, if we did treatment with them, as they deal with embryos and not donor eggs. We would have to reapply for NHS Funding again and the likelihood is that since we already have NHS Funding in place with WFI, it could end up nullifying our second and last NHS Funded cycle, meaning we would have to start to pay private.

Thank you for the well wishes! Xxx

[TT82]

@FoxNOtter oh so your case is very complicated, so sorry 😔
Try Altrui (UK), Grace and also Global Egg Donors- I heard about the last one on podcasts, boutique agency, but have donors worldwide, who would travel to your clinic, there's agency fee but maybe the rest of treatment your hospital can cover.

Also maybe press to check you for endo, so to make sure all is ok to carry a baby. Lots of hugs and support ❤️

[Sunshinebytheseaside]

Hi @FoxNOtter sorry to hear what you’ve been through, your clinic certainly doesn’t sound very sympathetic! Have you considered moving to a private clinic that takes NHS funded patients? You may find they are more open to trying different protocols. If you decide to go down the DE route at your existing clinic, ask them about egg sharing. From what I understand, you get half of someone else’s eggs and in return they get a discount on their treatment. That was the only sort of egg donation my NHS clinic offered. I know another poster suggested Altrui - I was very impressed with them when I had an initial consultation but I think they just work with specific clinics. Not 100% sure on that though and they were really helpful so maybe set up a call with them. Good luck.

[FoxNOtter]

While we're on the subject, is it also possible to advertise for a ED for NHS Funded IVF via means such as newspapers, magazines etc.? Or is it not recommended?

[FoxNOtter]

Quick update!

Been busy with other responsibilities, but have five minutes to myself to update this thread!

While my DH and I are still on the hunt for a ED, there is some development on my ongoing Uterine health shenanigans.

Had my telephone consultation with the Doctor last Wednesday and after countless, previous telephone consultations about my painful periods in the past as well as recent issues, she is the first doctor to have taken me seriously. The plan is to have a Pelvic Ultrasound Scan and a self swab done to rule out any other issues. @TT82 suggested that I should also be checked for Endo. Mentioned this to the Doctor and she said that if everything else checks out fine, an investigation into Endometriosis/laparoscopy will be the next port of call!

[FoxNOtter]

Also, if anyone has any suggestions for advertising for a ED under NHS Funding, we would super appreciate it!

Thank you!

[TT82]

@FoxNOtter hi, really happy to read they will do all the investigations and tests! So you will have a high chance for a successful round. Keep pushing them
Sorry, cannot advise on the NHS process, hopefully someone can chip in. Xx