Heartbroken 😒πŸ˜ͺ: I have been refused ivf i... - Endometriosis UK

Endometriosis UK

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Heartbroken 😒πŸ˜ͺ

Lilleigh profile image
Lilleigh
β€’28 Replies

I have been refused ivf i need to know if anyone's tubes have been blocked yet still managed by a miracle to conceive naturally??

Please someone tell me theres light at the end of the tunnel because at the moment im in a bad way 😞

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Lilleigh profile image
Lilleigh
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28 Replies
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Missy_22 profile image
Missy_22

Hi Hun I feel your pain I have stage 4 endo and both tubes blocked, one now removed. I can't get IVF on the NHS so just paid for it and doing it now! I really want children so that's what I'm doing!

I have never heard anyone conceiving with blocked tubes in sorry to say. Take care xx

Lilleigh profile image
Lilleighβ€’ in reply toMissy_22

Thankyou btw norethisterone helped stop my endo n i cant afford to pay which breaks my heart

Mabes profile image
Mabes

I'm so sorry. Perhaps you could do fundraiser towards the cost of getting it done privately. I see people dong them for other medical needs via websites like GoFundMe and YouCaring.

Lilleigh profile image
Lilleighβ€’ in reply toMabes

Thankyou il have alook into it x

Nicolahunny profile image
Nicolahunny

I no in my area that you can get two attempts on nhs but maybe different countries have different policy's hun I really feel for you hunni I think u should ask your consultant if there is any other tests they can run I no that there is one called a hsg test as iv known of it being effective at opening the tubes and helped many people fall pregnant xx

Lilleigh profile image
Lilleighβ€’ in reply toNicolahunny

I had the tube test n my surgeon couldnt do anything n iv been declined ivf altogether hun

Nicolahunny profile image
Nicolahunnyβ€’ in reply toLilleigh

Is there a reason why you have been declined ivf hunni cause I think if u have a condition like endometriosis and have no children then I believe that u should get it on nhs it just not fair at all hunni xx

Lilleigh profile image
Lilleighβ€’ in reply toNicolahunny

I havent got no children but my partner has from a previous relationship so ive been declined x

mal1960 profile image
mal1960β€’ in reply toLilleigh

I was the same, I also was refused I.V.F because my Husband had 2 children in a previous relationship and we both brought his son up. I have Endo really bad and could not get surgery as it was too dangerous. We have been married nearly 24 years and YES it did effect ME badly, but that is now all at the back of my mind, as such with life something else always appears and mine was Breast Cancer. I am now 52 and still suffering Endo really bad although I have no period as I have went through the change. i would love to say it get,s BETTER but MYSELF I cannot. Wishing you all the very best. Moira x

Lilleigh profile image
Lilleighβ€’ in reply tomal1960

I appreciate you replying having been told this at 26 years old its killing me i cant stop crying can i sugest if your endo is really bad to ask to be put on morethisterone as this helped stop my endo from coming back xxx

mal1960 profile image
mal1960β€’ in reply toLilleigh

Hi Lilleigh, I am so sorry I did NOT mean to upset you in the least. I had a lot of problems when I was younger,but I got through it all with the LOVE n SUPPORT from my HUSBAND.We have to remember our BETTER HALVES HURT TOO.At the moment I am going through more tests and bloods, just had a C.T SCAN and now going for the,[sorry cannot mind ] camera down the throat, I am gagging at the thought [haha ] But HAHO let,s keep a wee smile on our face. Praying for the people of Paris at moment. My problems are nothing compared to others, This is a wonderful GROUP, my husband found t for me and I read it every day even on a Sunday, it is good to read and also assosciatte with everyone. Take good care my wee friend and ENJOY what you have, much love Moira x PS. SORRY ABOUT SPELLING.

Nicolahunny profile image
Nicolahunny

I think u should take it further cause even though he has a child from a previous relationship u should still be giving the same rights hunni xx

Lilleigh profile image
Lilleighβ€’ in reply toNicolahunny

I dont or wouldnt know how to start or where to go to even talk to someone about that :'( i havent stopped crying since ive been told x

Nicolahunny profile image
Nicolahunnyβ€’ in reply toLilleigh

Bless u Hunni I'm going to do a little researching see if I can find anything out xx

Lilleigh profile image
Lilleighβ€’ in reply toNicolahunny

Thankyou i really appreciate it xx

Nicolahunny profile image
Nicolahunny

Iv looked it up for you 1st you should follow the nhs complaint procedure and complain to them about you been refused ivf treatment and c how you get on I wish u the best of luck and let me know how you get on Hunni xx

Lilleigh profile image
Lilleighβ€’ in reply toNicolahunny

Im going to look it up n how to do it it breaks my heart n cant stop breaking dwn x

Nicolahunny profile image
Nicolahunnyβ€’ in reply toLilleigh

Aww a big hug to u Hunni hope u get somewere with them xxx

Amullins12 profile image
Amullins12

How awful for you Lilleigh, I'm so sorry. My tubes are stuck together and stuck to my ovaries so a 'remote' chance if conceiving naturally. I'm only a week and a half post lap so I haven't had my follow up appt yet but the gyni told me straight after I could try IVF. Naively I assumed I'd get a free attempt, maybe even two as it's a legitimate medical reason. I've got a son already so perhaps that'll make me ineligible too, who knows? The system doesn't seem entirely fair, especially when it depends on your postcode. Hang on in there and fight this x

Lilleigh profile image
Lilleighβ€’ in reply toAmullins12

I know i havent stopped crying since ive been told the one thing i want for me and my bf is a familly and i cant even give him that now n yh my tubes are stuck to my wall well they were i had a lap 2 weeks ago to unstick it xx

Amullins12 profile image
Amullins12

I've cried every day since the lap, it's a very emotional time. You're still recovering so you need to concentrate on that and then start considering your options. Your mind is probably all over the place x

Lilleigh profile image
Lilleighβ€’ in reply toAmullins12

It is more so now that ive been told this im only 26 and been told i cant have kids its killing me x

Missy_22 profile image
Missy_22β€’ in reply toLilleigh

I think you should fight this. Your only 26 and every area has different policies with NHS but go back to your GP and fight all the way! I would go public too, make a big thing about! You will become a mother.....just fight forward Hun xxx you deserve one go on the NHS

Lilleigh profile image
Lilleighβ€’ in reply toMissy_22

My doctor said theres nothing she can do she said if she had it her way that she would right all the letters and referrals needed but because ther are guidelines she cant bend or break she cant do anything im aready on the nhs and was reliant on the free ivf treatments you can have because i cant afford private i dont know what avenue to go down or to take im a mess xx

Hollie90 profile image
Hollie90

hi Lilleigh, there are other programmes that could help. There is an egg sharing program which gives you free IVF, there have been adverts for it on the radio recently but I had a Google and I think a few egg donation schemes do it. It means you'll be donating your eggs to another lady who's in a similar position too which is nice :) also if this is not available there are so so soo many children in the world who need loving. All my love, Hollie x

Lilleigh profile image
Lilleighβ€’ in reply toHollie90

Thankyou for that :) but unfortunately i cant adopt either n i was told about the whole giving half my eggs to someone but it means a whole heap of counselling and thers a chance 18 years dwn the line that child can come looking for me i dont think i could cope with it i literally have nothin to hold on for anymore :( xx

carrie1976 profile image
carrie1976

Unfortunately if either partner has child you are automatically excluded. I work in the nhs and fertility and it is a criteria set out by the commissioning bodies . I am not sure however if appealing will alter that sadly I suspect not

Pesto profile image
Pesto

So sorry to hear what you're going through Lilleigh.

You're very early post lap and I know after my surgeries I've felt particularly vulnerable and low afterwards and felt stronger and more ready to deal with things after a few more weeks.

Ivf is unfortunately a bit of a postcode lottery. Each commissioning body will have its own criteria but you can challenge them. That might not be successful but you can try.

This link nhs.uk/chq/Pages/889.aspx?C... is the NHS info on ivf. It sounds like your local CCG has tighter guidelines than most.

If you contact your local PALS (patient advice and liaison service) they should be able to direct you and support you in taking it as far as you want to.

And also, remember that there are many paths to happiness. I do desperately want children but I personally would not consider IVF gor myself, and last time they checked, both my tubes are blocked. I'm not sure that my fiancΓ© would consider adoption (although some friends of ours after a very long and unsuccessful fertility treatments journey have now adopted a wonderful child and are happier than they ever imagined - and the little person who had such a rough start in life has a stable family) - but I'm seeing it that perhaps my involvement with little people might be being a super Auntie/ friend/babysitter/Godmother. I can still have a positive impact on their lives and be a support.

Are you talking to your boyfriend about this too? When I feel like its all overwhelming hearing him tell me its ok and we'll take it as it comes always helps!

But most of all focus on getting over your lap and feeling stronger, then grao the bull by both horns and get some support in your fight.

All the best xx

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