My GP just told me by text that I can't have IVF

[TinyGoldfish]

I have endometriosis and suspected adenomyosis and my fertility is currently being investigated. At my last op I was stage 4 so although I probably don't have the worst chances (as in I have both my ovaries and a uterus) statistically speaking it's a probability that I would need IVF to get pregnant.

Not an impossible hurdle in itself! I wouldn't be able to afford it privately but it's OK because the CCG for my area fund two cycles of IVF for women with fertility problems caused by issues like endometriosis and I fit all the other criteria.

Except, being in a same sex couple we would need to use a sperm donor and it doesn't say anything about that.

I had an appointment with my GP anyway and I asked about this. He spent some time trying to find out about it but couldn't. "I'll look it up tomorrow then call you. Or text you. Can I text you?" he says. I agree that that's absolutely fine and leave.

Today I had a text: 'it seems your IVF investigation and treatment isn't available on the NHS'. In retrospect, agreeing to a text was a really really rubbish idea.

Now I don't know what to do. I've failed before I've even begun. Opinions? Advice? A Grip? Literally anything would be better than this standing on the edge of an abyss feeling I have right now... Help.

[TinyGoldfish]

I can and will have my endometriosis removed (again) and could absolutely act on that little 'fertile' window after the op.

I never thought it would be impossible to get pregnant (like I said earlier, I have eggs and a womb) but there's no avoiding that statistically it would be difficult. Which is why moderate-severe endometriosis qualifies you for IVF in the first place.

Which is why me and my GP and consultant were talking about it in the first place. The plan was: get everything in place (sperm donor, waiting list for ivf) then have my operation so I had the best chance of success.

Seperate note: No updates to report from the CCG yet but will post here if they say anything new.

[shannon1907]

I too suffer with endometriosis and in January had it removed from my left ovary and womb and told to try naturally for the next 6-9 months before seeking private IVF treatment as I am not entitled as my boyfriend of 7 years has a 10 year old daughter from a previous relationship. Why cant your endometriosis be removed? I appreciate that's not a complete diagnosis for you but may help x

[star1980]

So sorry OP. I've just read through this thread and feel quite outraged. I thought the anti-discrimination laws applied equally to criteria that, whilst not directly or explicitly excluding a protected group, disproportionately affects them because they could never meet it? So I'm surprised at Stonewall's response. Yes, some heterosexual couples will be affected by this criteria but all same-sex couples will simply because they are a same-sex couple. This is going to sound silly, but would you meet the criteria if you found a donor who went along for treatment and essentially acted like the partner?

As someone else has said the postcode lottery that is fertility treatment is just so cruel sometimes.

[TinyGoldfish]

Stonewall have emailed and confirmed what pp have said: it's not discrimination as such because it excludes straight couples too.

I have my next set of blood tests on Monday (day 21). I'm still going to go but it feels a bit odd to.

[MrsDarcy4092]

I have not read all the comments but my ccg policy states it will not find any treatment involving sperm donation. You can contact them to ask for a copy of the policy if you want to clarify. I'm sorry .

[TinyGoldfish]

Thank you, Mrs and tinkitonki, really good advice. I have to digest it all I think.

[tinkitonki]

Sorry the CCG didn't have better news for you, I suspected that would be the case but I appreciate it doesn't help you.
One thing I forgot to mention is that the Agora in Hove do have an agreement with access fertility so you can pay for a package of cycles which works out cheaper per cycle overall.
It's a bigger initial outlay and if you get pregnant first go you loose out but if it takes more than one cycle to get pregnant then it's significantly cheaper in the long run.
I would also think about going abroad, much cheaper and not as daunting as it seems, Norway was our front runner when we looked into it, prices were around 1/2 of UK even with travel costed in.
Check out fertility friends, loads of women on there have done it.
You will get your baby, it's just going to require a different route.

[MrsChrisPratt]

The thing is, under those rules, your DP won't get any funding either.

And... like many on here (myself included), you could have IVF funded by the NHS which doesn't work, and would then be looking at self-funding...out of interest, how many rounds of IVF does your CCG fund in cases where a donor is not required? It takes on average three rounds to fall pregnant.

It totally sucks for you, and I think it is very unfair, not just on you, but on other couples who require a donor also. The postcode lottery for IVF is just so unfair...

But the point I am making is, under the current rules, neither of you will get funding. Therefore your choices are:

1. Fighting the decision -probably feels like the right thing to do, but you may end up wasting valuable fertile time following your op, and possibly receiving a lesser quality of care than if you self-funded (certainly has been my experience so far of NHS vs private care, but depends on the situation where you live), IF you are successful in overturning the decision

1. Self funding for you - financial drain and stress, but potentially less so than option (1), should be a high quality of care (you can choose!)

1. Self funding for DP - would this have a higher chance of success? Would you be willing to sacrifice having a pregnancy for that higher chance of success and having a family?

1. Other options you might consider to create your family (foster, adoption) - I know this is a big no-no to suggest to someone having fertility issues, but before anyone jumps on me, it is on my list for consideration also.

1. No children

You have some very stark choices to make and it can be very lonely and very hard. It sounds like you long not just for a child/family, but for a pregnancy/baby too - so you may be able to strike out some of the above options quite quickly. Talk to your DP and come back here for further info/advice and to talk it through.

I hope the above doesn't sound insensitive - I am not really a hearts and flowers type - I like to methodically work out all my options and then decide what my 'decision tree' will be - ie if X happens, Z is the next step, if Y happens, B is the next step etc. This has helped me feel like I have at least some degree of control over my life, for the last three year, during which time I have been TTC and battling IF.

[TinyGoldfish]

The reason I see self funding IVF as a non option (apart from the fact it would be incredibly difficult to afford) is that DP could carry the baby instead of me. And would it therefore be selfish of me to spend our money, or get us into debt, just because I want to be pregnant?

I've replied to the CCG to ask them to clarify whether it could be part funded ie we pay for all the processes and procedures to do with having a donor and the NHS pays the rest.

[mouldycheesefan]

Just to add, I wouldn't look at it as 'I can't have ivf' I would look at it as ' I need to find a different way of becoming a parent, which may include self funding ivf'.
I feel is such a long hard road with hurdles all along the the way. This is just the first one to be overcome.

[mouldycheesefan]

We didn't get any treatment funded just because of where we lived. We went private and we are very glad we did, but it took £17k and 4 cycles for us to have our children. I do feel very very sorry for those that can't stretch to it but don't give up until you have explored all the options for financing it.
Is there any way that you could pay seperately for the donor, which maybe you would have to even if not having ivf, But have the rest of the treatment funded by NHS?
Or could your partner be the one that is pg if that is the more straightforward option?
Good luck

[TinyGoldfish]

Update for anyone who's interested - the CCG emailed me this:

'I am afraid that a woman in a same sex relationship would not be eligible for NHS IVF funding as the CCG does not fund procedures involving donor genetic materials for any patient group. This would be the case even if she met all other criteria within the IVF Policy.'

[TinyGoldfish]

Thank you to everyone who's shared advice and experiences.

I talked to my DP about it. She said the same as all of you really: We do have options, we just need to figure them all out. I feel like I need a really big list of possibilities.

I've emailed the CCG and Stonewall but haven't heard back yet.

Mountain & T1 - yes I've had 3 operations so far and am on the waiting list to have my 4th. What I wanted was to get all of the fertility stuff organised (in terms of joining any waiting lists, finding a donor, etc) so that after I had had my next operation I would be ready to go for it before (if) the endo came back again. Statistically speaking you have 6 months of 'increased fertility' after being treated surgically for endometriosis, so I was thinking that would be the point I would want to start at. I was trying to get all my ducks in a row.

I'm having a really rubbish time with my pain anyway. I might have to reduce my working hours because of it or look for a less physical job, which will leave us with less money. And this just feels like another fight. One I (maybe naively?) wasn't expecting.

[nosireebob]

Same situation here, didn't get anywhere with NHS and we went overseas as couldn't afford private here. Good experience and successful though, busy worrying about primary school places now :)

[tinkitonki]

Hi. I'm in Brighton and Hove too and we went through this a few years ago. Sadly the policy was the same then for us, we went private in the end and have 2 children.
Anyway when I investigated the CCG (or PCT) stance at the time it transpired that it was technically not discriminatory to same sex couples as they don't fund donor treatment for anyone, gay, straight or single.
It's a rubbish loophole in my opinion but one they have stuck to for years.
We egg shared in the end, drastically reduced the costs and meant we could pay it forward as well to someone who needed donor eggs. Don't know if this would be an option for you?
You can appeal any decision the CCG make, and given your 'issues' it might be worth looking into but I have no idea how likely it would be to succeed.
I'm sorry I can't be more positive, just wanted to share our experience. Good luck with it all.

[t1mum]

That is plainly discrimination then. Agree with others to contact Stonewall. But also agree with MountainDweller than you should press for treatment of your endometriosis. Also, I have adenomyosis and PCOS and this hasn't stopped me conceiving. I know that I have been very lucky, but conditions that affect fertility don't necessarily prohibit conception. I do understand though that in your circumstances where there will presumably be a cost to each attempt, you will want to do everything to maximise your chances of conception. Wishing you all luck and hoping that this turns out well for you.

[MountainDweller]

A bit off topic but have they actually treated/removed your endometriosis? They should do that anyway, not just for fertility reasons but for pain relief/relief from heavy bleeding and other endo symptoms. That would give you the best possible chance of conceiving.

[BorisIsBack]

Tiny - the foreign clinics will cope with your endo and any other issues you gave with no fuss.

[middlings]

I agree with everyone else that you need to go straight to the CCG. My GP didn't have the foggiest when we were looking for funding, despite the fact that the regs had been in place for about two years. In those days it was still the PCT but the role was Fertility Funding Manager. I ended up on first name terms with ours

[Merrow]

On a more helpful note, I'm sure there will be LGBT baby groups locally, could be worth getting in touch with the organiser and seeing if anyone will speak to you about their experiences?

[TinyGoldfish]

Ok I've found a number and an email address for the CCG. I'll talk to my DP then at some point I'll get in touch with them and see if they can clarify what the clinic said about them.

[TinyGoldfish]

My DP will be home any minute.

Thanks Boris. I have to think this all through. The immediate problem that I can see with that is that I would need any medication to be really considered as I wouldn't want it making my endo worse and is that as easy to do abroad? But that's a thought for another day I think...

[Frazzled2207]

I think you need to clarify with the ccg directly and there will be some kind of appeal process.
It's appalling and illegal if you're being discriminated against because you're same sex- I would be threatening to speak to the media etc.

[Merrow]

Oh ffs, Brighton??? You should be surrounded by lesbians who have had successful NHS fertility treatment!

[TinyGoldfish]

No cookie I don't mind saying where I am. I name changed before I wrote this post so I wouldn't have to lose my other name if it all got a bit identifying. (Ironically?) I'm under the Brighton & Hove CCG.