IVF with untreated stage 4 endo? - Fertility Network UK

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IVF with untreated stage 4 endo?

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Just wondering if anyone with severe endo has had success with IVF? I was diagnosed with stage 3 endo 6 weeks ago after a diagnostic lap, there was too much to treat at the time so they brought me back this week for excision, but they had to abandon the surgery as it was much deeper and more severe than they anticipated. So now they’re recommending we do ivf first and then treat the endo when we’re finished with baby making. But I thought that having severe endo made ivf less likely to succeed? I don’t want to put us through the financial and emotional cost of ivf if there’s not a reasonable chance of success. Has anyone got any experience in this area? We have our first appt with the fertility docs on Tuesday, what should we be asking?

Thanks heaps in advance

11 Replies
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Hi Hun, I have stage 4 Endometriosis & had been trying to conceive for quite a while when diagnosed. I was eligible for IVF on the NHS but was told I would need surgery to remove my Endometriosis first & then go on Zoladex injections to hopefully prevent regrowth prior to starting my IVF. The relationship I was in at that time ended before we had IVF. I started trying to fall pregnant again with my now husband but nothing happened & when I was again eligible for NHS funded IVF, I was told they would operate again to remove the Endometriosis first. I fell pregnant naturally twice somehow but miscarried twice so had IVF in Greece in March. I was told I would need the Endometriosis removed first there too but it turned out that I only had one smallish chocolate cyst on one ovary so he said I could have IVF. My UK consultant did say they don't like to keep doing surgery ( my Endometriosis is mainly on my ovaries ) as it can end up causing more damage. It's difficult to know what's right as even if I see 2 different doctors at the same hospital they don't always agree on things! I was very lucky though & did get a BFP with our first IVF cycle. I hope you get things sorted & your longed for baby is on the way to you soon 😘 xx

penny24
penny24
in reply to Hidden

Hiya, I had a laparoscopy to find out why I wasnt falling pregnant. They found endo (grade3-4) and removed what they could at the same time. At my follow up they recommended prostap injection for 3months then to go straight into ivf, this would give me the best chance of conceiving however we were unsuccessful. I suspect that The surgery or prostap reduced my egg quality because I had significantly better ivf results on round 3 once the prostap was out of my system. So maybe you will b better off jumping straight in with the ivf? Good luck xx

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in reply to Hidden

Congratulations on your BFP! 💕

Hi Limpie.Sorry to hear about your endo. I am in exactly the same position as you and have severe endo. I had my laparoscopy last July and they too, saw that my endo was too deep ( I also have recto vaginal endo) and it was too risky to continue the surgery. I was told to go straight to ivf, have a family and then comw back for the big op which will include bowel and rectal surgery and a hysterectomy. I was told my tubes are not normal hence natural conceotion is very slim. I just completed my first round of ivf and a frozen embryo transfer. One embryo did take ( I had 2 put in due to age and endo) but unfortunately I missed miscarried last month. The Dr said this wasnt due to my endo but the fact that over 50% of the embryos are genetically abnormal. I have 11 blast embryos ( one good thing that came out of this difficult journey) so for me its taking a gamble each time until I get to an embryo that takes me all the way to a successful pregnancy. This is the sad part, as it will mean more money, more pain both physically and mentally. I had so much pain throughout my ivf but each person is different. There is hope for us endo sufferers. If you want to talk further, message me. Good luck with what you decide xx

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in reply to cryst4l

Thank you xx im sorry you’re having a hard time of it with the ivf, it’s all so unfair l

Hi Limpie, I have suspected endometriosis (the doctor is pretty sure of it because they can see an endometrial cyst). She told me not to bother with lap and just go straight to IVF. I have no success story so far but given endo can come back she just said there is not much point if I can go straight to ivf

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Thanks for the all the replies, it’s reassuring to hear from people in a similar situation. I guess I’m just a bit blind sided by the outcome of the 2nd op, I thought all the endo would have been removed by now and we’d be looking forward to starting ivf with a clean slate (so to speak) so to find out that actually the endo is much worse than they thought, but never mind we’ll just leave it there and carry on regardless, just feels kinda wrong 😬

Hi lovely

I have severe endo too. Diagnosed trough lap after we were trying to conceive for over a year. The people who did the surgery and arranged it were actually IVF clinic. After the lap I was put in prostap ( the worst 6 months of my life due to all menopausal symptoms ) and we went for ivf. Got 10 eggs collected , 9 fertilised, 6 got to embroi stage, 1 put in 5 frozen :) I’m now 21weeks pregnant after the first cycle.

I think a lot depends on where the endo is located. Mine is at the back side of the stomach, ovaries, tubes and intestines. My left ovary is still attached the the womb.

Some doctors believe that getting pregnant and all hormonal changes that follow it, are actually beneficial for people with endo and it helps to calm it down.

To put it in perspective I had

GP referral to ivf clinic in March

First appointment in the ivf clinic in May,

surgery in September

Started ivf cycle in February

Transfer in March

7th April BFP

Good luck

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in reply to Buisquits

What a lovely reply! And such a happy outcome for you :) congratulations, I take hope from that x

Also wishing you good luck and to say my daughter was successful on her 1st IVF despite severe endo so there is Hope! Xx

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in reply to Autumnmoon

Thank you it’s so good to hear stories like this :)

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