Two Ectopic Pregnancies, funding/IVF ... - Fertility Network UK

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Two Ectopic Pregnancies, funding/IVF questions...

AshK777 profile image

Hi all! Firstly just to let you know...I am the husband!

I found you guys by searching for info on NHS Funding. A bit of background on us, we live in Southampton, Hampshire. I am 33, my wife is 31, she has had two ectopic pregnancies and subsequently had both fallopian tubes removed, the most recent being Sept 2016.

I understand from talking to my GP that we would qualify for IVF Funding because of my wifes tubes being removed. However, from what I can find we only qualify for one cycle, am I right? The other question I have is...is there an option for appeal? Two ectopics is incredibly unlucky, we have had several hospital consultants say this, so not sure if this would make any difference?

Another question is, if you are funded, are you best to do your treatment via the NHS or go to a private clinic with NHS funding?

Sorry but yet another question...do you know how long the process is, from the GP writing the initial letter to you finishing IVF?

It is still very raw for both of us and we're not really in a good mental mindset to go through it yet, both scared to death of it not working.

Any help, much appreciated.

Thanks :-)

27 Replies

Hello,

I am too in Southampton. And correct that we only get 1 funded cycle. Dependant on your postcode you may be eligible for a frozen cycle too. We aren't with our postcode ...

I don't think you would be able to appeal against the decision of 1 funded round. That is unfortunately just how the funding is at the moment.

In regards to time lines. I was referred in November and I am starting my treatment at the end of April. So a good 5/6 months before treatment begins.

Best of luck to you both 😊

AshK777 profile image
AshK777 in reply to

Hi Jadep01

Thanks for your reply, much appreciated.

Oh wow 5 or 6 months? My GP said 6-8 weeks which I thought was too good to be true!

Do you know how we find out about the postcode part with the frozen cycle? Is that free?

in reply to AshK777

You're welcome!

Your gp advised 6-8 weeks from referral to end of ivf?

Have you both had all tests done to ensure that ivf is the way to go? These tests alone took us a couple of months to get sorted out. What about funding? Has that been applied for?

I had my nurse appt to do consent forms and drug training on the 10.03 and don't start treatment until the 26.04. Everything is quite a long old wait in this field unfortunately 😤

There is a website that you can find the funding out on. I think as your Hampshire you will fall in the same bracket. 1 funded cycle only 😏 I just found that on good old Google.

Yeah that's what the GP said, which at the time I thought was wrong.

We've had no tests or anything yet at all, funding not been applied for either. I am just trying to find out all the information before we go for it, my wife is still very upset from what happened.

Yeah I found out about the one funded cycle only on google but you mentioned the frozen cycle.

in reply to AshK777

Yeah I don't think that is correct. Funding itself can take up to 6 weeks to come back 😏

If I was you I would make another appointment with your gp once your wife is ready to embark on this journey...they will need to refer you & then you see a specialist and apply for funding 😊 The doctors can do all blood tests needed etc and then the clinic do the rest of the tests needed.

We was advised of the frozen cycle at our Dr appointment but it is only available for certain postcodes in Hampshire and we didn't qualify for it on ours...neither did 2 other friends we know going through ivf in Hampshire too so I would play safe and assume you only get one funded cycle if you are approved.

AshK777 profile image
AshK777 in reply to

Thank you.

Can I ask...what blood tests do they do? and what are they looking for?

in reply to AshK777

I've had to have all my hormone levels tested etc at the beginning of the investigations. We've both had to have HIV, hepatitis and STI tests, rubella was also tested for immunity in myself.

If you go onto complete care website, it's the fertility clinic in Southampton & they have a guide on there advising step by step of the ivf process. It's quite helpful 😊

AshK777 profile image
AshK777 in reply to

Brill, thank you

AshK777 profile image
AshK777 in reply to

And good luck too, happy to chat more if we can help each other in any way :-)

in reply to AshK777

No worries!! Best of luck to you both.

Keep positive and I hope everything works out for you.

Feel free to ask away if you have anymore questions 😊 and I'll try to help as much as possible.

So sorry to hear about your painful journey. It's tough but as a strong couple and with everyone on here you will have a safe place to turn to for support and advice.

Our first round of IVF was from a referral from our GP. We went to see our GP in January and she then referred us to the hospital and we finally had our treatment in November. So it's a long process with lots of tests and waiting in between. My advice to you is to start as soon as you can as you have a lot of waiting in the middle to work it through as a couple.

We did IUI twice in the wait time just in case it worked.

I don't think you can use private clinics with NHS funding unless they are specially registered for NHS. You will

probably get a choice of local

Hospitals e.g. Southampton, Portsmouth etc and you have to go with one of these.

If you are sadly unsuccessful from your first cycle you can pay for private treatment on the NHS which is cheaper than going to a private clinic. The downside is it's more one size fits all where private clinics are quicker and more bespoke.

You will normally get your frozen cycles included in your NHS go so depending on your harvest you may have multiple attempts. There are many ladies that got pregnant first time and I'm sure you will hear their success Stories.

You must always believe and have hope. Our journies suck but we all keep going as we hold a torch of hope 🌈🙏. I wish you both the best of luck with your journey xx

Even if frozen cycle isn't included then you might find a future frozen cycle would be cheaper for self funding as no egg collection procedure and fewer drugs!

Difference between private and NHS clinics is very blurred depending where you are. I'm in a different area and in our area all our treatments are referred through to private clinics. There is no NHS treatment in a hospital but we do get one round funded at the private clinic, so the idea of getting cheaper private treatment through a hospital may not necessarily apply.

In our area it really was only a 6-8 week wait from our infertility consultant referring us to going for our first ivf consultant appointment, and we started treatment 2 weeks after that.

It's so different in every area but they talk you through it every step of the way.

Thank you :-)

Can you explain to me what you mean by a future frozen cycle? Sorry...being the male I am confused!!! Does that happen during the first IVF procedure or something we would have to ask for and pay for?

Also...I have just been researching the different facilities around here and it seems we should be able to choose which one, providing they accept NHS patients, so I've been looking up success rates etc

Future frozen cycle means if you get extra embryos out of your funded (fresh) cycle, you can opt to have them frozen then defrosted at a later date and put back in for another try. There is a cost for the freezing, storage of the embryo and then a new cycle (not technically Ivf because they're already fertilized but similar process of drugs and a transfer to put the frozen embryo/s back in). According to the poster above, it looks like you wouldn't have funding for those costs but it would almost certainly be cheaper (and easier on your wife) to do a frozen cycle than a new fresh one if your first ivf cycle fails. However, it depends on you having extra embryos suitable for freezing, which you may not get (I didnt).

thank you :-)

Just to chip in. Ccg is based on your gp's postcode and not your home postcode (incase you are close to a ccg border). Unfortunately the south west is known for having very poor funding in the UK.

Frozen cycles are if you are lucky enough to have any freezable embryos after they've transferred a "fresh" one in the first cycle. They can freeze the remaining ones and you can have a frozen transfer in the future. However we were told only 1 in 7 have embryos left over to freeze and they might not survive the defrosting.

AshK777 profile image
AshK777 in reply to emmab178

Ok thanks, I think I get it :-/

Hi Ashk777, sorry to hear about what you've both been through. I too have had two ectopics amongst other losses. Both my tubes were removed because of hydrosalpinx probably caused by the ectopics.

Sadly the amount of rounds you are entitled too comes down to the postcode lottery and the area you live in. They range from 1-3 attempts and your doc will advise re how many you are allowed. The fact your wife has had both tubes removed sadly will not determine if you have extra rounds.

You can move your NHS round to a private clinic, you have to write to your local ccg area who approve the funding stating the reasons why.

Personally if I knew on my first round what I knew now I would be putting a request in to move to private for the reasons of requesting PGS ( pre genetic screening) on the embryos prior to transfer. It will cost a couple of thousand for this as it's currently only done in the private sector and not available on the NHS, but I was told with having two ectopics that it could be caused by an issue with the egg quality making it more lazy to travel through the tubes when it's been fertilised. I have had 2 unsuccsssful rounds (2 chemicals and my last one a complete negative) and was told yesterday my issues are probably down to egg quality.

I have one round left, so for me not worth paying for the screening tests now as either way I have nothing to lose by doing it. My next option will then be private but using Doner eggs, which was also advised to me yesterday.

Do as much research as you can, and ask the specialists as many questions as possible. May also be worth having the NK test done which privately costs about £380 (again not covered in the NHS) and above all else arm yourself with the facts and don't be afraid to challenge if you have a different view to what your being told.

Goodluck with the future. 2 ectopics does not mean your wife will never have a successful pregnancy, it just means you sadly have to take the longer way to get it. But I know the pain and dispair your wife will be feeling. Hug her tight and give her loads of love x

AshK777 profile image
AshK777 in reply to baby2016

Ok thank you so much for the detailed reply and so sorry for what you have been through. I am trying to arm myself with as much information as possible. I am staggered by what a murky field this is, given what is so important to all of us.

I am still learning all the terms so correct me if I am wrong here but...does PGS mean they will look at the eggs before the IVF treatment?

I have found a private clinic which says it takes NHS patients.

And I've been giving her lot of love, I will never give up until we have a child

baby2016 profile image
baby2016 in reply to AshK777

no problem, will always help and advise where I can and glad to hear your looking after your wife. By doing this research and you finding this site shows how supportive you are. Yes the PGS is done once your embryos have been created and I think can only be done on day 5 embryos (blastocysts) these are the when the embryo has over 100 cells within them. A sample is taken and analysed and they can then tell you if their are any genetic faults etc with the embryo.

Your best contacting the private clinic that you have found who takes NHS patients and asking how you get the treatment transferred over and if they cover PGS as it is a fairly new thing.

If you have a huge wait time and you do have money to spend on ivf then also research/ google ivf refund policies, as there are some cracking deals around. A clinic near me is offering 3 rounds of ivf (including all frozen embryos from each cycle, all meds included (these can cost approx £1.5k-£2k per fresh cycle) with PGS also included for £14k and if you do not get a baby by then end of it then you get a full refund!!! The main stipulation is that your wife's amh level (ovarian reserve level which is diagnosed through a blood test) is over 10. If I had seen this scheme 2 years ago when I was referred for NHS ivf then I would have gone down that route but now my amh is too low. A lot of clinics offer various discount schemes but most go off age and amh, so knowing what her amh level and fsh level (another blood test done between day 2-5 of her cycle) is vital to know.

If you have time on your side if she does have good amh/fsh then use your NHS round and then go private if needed. But be aware amh levels if already low and drop very quickly.

NHS have been pretty good with me, however my friend was private on a discount scheme and her experience with private has been amazing, no wait times, always someone see can speak too, careful monitoring of bloods throughout (which I don't get) and no wait times between cycles. She managed 5 embryos from round 1, had had 2 chemicals, 1 missed miscarriage all from that round. She had 2 embryos left, transferred both and is now 18wks pregnant with one healthy baby!! She has worked out with all the costs that she would have spent she's broke even with the package she was on and obviously is so glad she did it. Hope this all helps too! It really is a mind field out there and what doesn't help is nothing's black and white and all clinics have different opinions! x

Hi and welcome

I live in West Sussex. We had to be trying for two years with no success after that we saw GP for tests then got referred to another GP who specialises in fertility who then completes extra tests and then decides if IVF is the correct route. We then got referred which goes to the CCG for funding acceptance then onto our clinic.

The time line for us was saw GP in Jan 16, referred to GP specialist then and saw her in April. We weren't sure on IVF straight away so tried naturally a couple of months so then in August we said we would try. She referred us at the end of August 16 which went to CCG who granted funding in a couple of days and they gave us a list of where we could choose to go (all of which were private but accepted NHS patients). We saw fertility consultant end of Sept 16 and started treatment end of Oct 16.

We get two fresh and two frozen goes.

They were all very kind to us and IVF really was a scary thought but actually turned out not too bad 😊

Good luck!

hi there. ive had 2 ivf treatments. the first one a fail. no troubles. the second one we i

aee at the end of it now. it takes 4 weeks from start to finish....honestly if shes had 2 ectopics already i wouldnt do ivf....i have had 1 ectopic 3 years ago. and today i lay in bed with a positive reading for pregnancy but doctors cant find the baby. there suspecting an ectopic....i have to just sit and wait to see wat my hcg lebels are every day. im in a lot of pain and a hell lot of heartache not knowing wat is going on.

Hi, I'm so sorry, i have been the same, I had 2 eptopics both resulting in my tubes removed, my last one was in Nov 15,I went back to hospital in march 16, and I had my 1st round of ivf in Dec 16. When I was in hospital I got told i would be able to have 2 rounds of ivf on the NHS, but when I was put it through they told my I was only allowed 1. My 1st ivf unfortunately didn't work but my doctor at the clinic is trying to appeal this and trying to get my another go free because of my circumstances. Hope this helps xx

I found this online, you may be able to use this to request funding for more Ivf. Might be useful for Ash777 as well?

england.nhs.uk/commissionin...

Thankyou very much xx

Hello

In my area 1 cycle includes the transfer of any frozen embryos too so worth checking.

You're quite right to take some time out to mentaly prepare for the next step. You may find counselling helps, it did for me!

Wishing you and your wife he very best of luck.

x

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