Endo and IVF

Hi all,

I'm hoping for some advice on experiences with ifv for Endo related infertility.

I had my last lap on the 6th of Feb and we have been trying since then with no luck. Ive been ovulation (using ovulation sticks) every month and trying all the timed conception stuff. But to no avail.

We had our first assisted conception appointment the other day and after a little bit of questioning the specialist announced that the best option would be to try IVF straight away. No other treatments or options. She explained that other treatments may make things worse again and send me back to the beginning in relation to treatments and would waste more time in relation to conceiving.

I'm pretty freaked out to be honest. I was not expecting this and feel a bit overwhelmed. I had been getting really positive vibes from the Endo team so was not preping myself for such an extreme result!

In addition, the funding elements of this are daunting in its self. We live in the Merton and Sutton borough which has an appalling reputation for funding Ivf.

So my question is, what experiences of Ivf and assisted conception? Any advice on fighting for funding and any insight into the success rate and treatments specifically tailored for Endo patients?

Thanks!!!

J xx

13 Replies

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  • I agree with your consultant - sorry - but she is spot on if you really do want children. IUI rarely works with healthy people let alone endo ladies, and you've been trying for long enough. She is being sensible.

    I wish I had listened to my consultant nearly 3 years ago and moved to IVF straight away. It's taken me 3 years to get to the point of starting treatment.

    Success rates of IVF is usually based on age, but for Endo ladies - it also sadly depends on the stage of Endo that you are diagnosed with.

    Stage 1 / 2 result in similar success rates to tubal infertility, so about an average of 30% success rates per IVF treatment

    But Stage 3 or 4, particularly stage 4 which usually means ovarian disease, often means much lower success rates, sadly - for me anyway. I am stage 4 and currently undergoing my first treatment.

    I have done quite alot of research, the stats aren't on my side. I have been given max 10%, but that is also taking age into account, I am nearly 40.

    I have some research papers that too that reflect these stats.

    As for funding, I didn't bother fighting my CCG. I don't have time on my side, and they just were not interested. For NHS treatment, its not just age as a qualifier, it's can be blood test results too. I have a very low egg reserve (AMH), so that indicates low ovarian reserve and quality. I'd recommend you get your FSH tested first. NHS do not pay for AMH.

    You could fight the CCG if you have age on your side and if you have stage 1, 2 or even 3 but if you are stage 4 and mid to late 30s I would not waste any time.

    Yes, it is terribly unfair most of us have to pay. Some CCGs give 3 rounds of IVF and some none. It's not right. Infertility is a disease with huge social and psychological impact. We should be treated for a disease, both Endo and the infertility - because let's face it, the endo caused the infertility. It's not like it was a lifestyle choice for us to not conceive earlier (not for me anyway). Infertility is a comorbidity of Endometriosis and therefore should be treatment on the NHS. But the NHS has no money.

    Despite all this sounding negative, I have read of some success stories for people with Stage 4 disease. Then of course there is the donor egg route which means younger eggs, which is a huge determinant of success.

  • As for treatment protocols in IVF for endo patients. It's often the long protocol, to give the ovaries a chance to rest before stimulation. Short protocol can produce cysts and low quality eggs, but saying that, one clinic wanted me to have short protocol but I knew it wasnt right for me.

    My consultant wanted me to take 3 months of zoladex prior to IVF, and I have read this works for some people with severe disease, so I may regret that - but I am quite anti zoladex despite recently meeting someone who only conceived after a course of zoladex for 6 months - so that confused me. But I felt I couldn't risk that with my low AMH. It seems it is not an exact science. I wish it were.

    But your IVF consultant would advise you on all that.

  • Hi,

    Thank you for your advice, it's given me a lot to think about.

    I am 31 and was diagnosed with stage 4 July 2013 - I had large cysts in both overies.

    From what you are saying I really need to push ahead and start the process as soon as possible. I'm hoping to get funded for treatment and Chealsea and Westminster hospital which have a really good Endo and acu with a high success rate of 51% for woman of my age group.

    I am waiting for results for my fsh and Amh results and will have a Chem progesterone test done in a few weeks when it's the right point in my cycle. So I'm hoping for some good news.

    I've got a lot more research to do! I do feel that I want to fight the funding bodies. I feel quite bitter about the way funding is handed out. It may not be cancer but it is a condition we had no part in making and we should not be punished for it.

    I really have my fingers crossed for you, I hope it goes well and have a very positive result for you.

    Xxx

  • Hi Jema

    Glad to hear you are 31 that will really really help but the cysts in the ovaries aren't great. I presume these are endometrioma? Have you had them drained, or a cystectomy?

    51% is unusually high, I shall take a look at that too, impressive indeed.

    I agree re funding, but on the other I also have a young friend with cancer so I can see it from both sides. It's difficult.

    Let me know how you get on. x

  • I believe they were drained and allowed to dry out during a triptoroline treatment for 6 months. On the positive side of things, the triptoroline worked so well the surgery needed was not as extensive, causing less scar tissue.

    Do you know much about embryo glue and endometrial scaratch treatment?

    I've had all my treatment with c&w where they have a fantastic Endo unit. So they have a good knowledge of its affects. I've been told that the acu works closely with the Endo team and the Endo team have a good success rate at post treatment conception.

    Are you being treated in London?

  • Here are a few of the articles.

    humrep.oxfordjournals.org/c...

    medscape.com/viewarticl...

    ncbi.nlm.nih.gov/pmc/ar...

  • Hi,

    Thank you for your advice, it's given me a lot to think about.

    I am 31 and was diagnosed with stage 4 July 2013 - I had large cysts in both overies.

    From what you are saying I really need to push ahead and start the process as soon as possible. I'm hoping to get funded for treatment and Chealsea and Westminster hospital which have a really good Endo and acu with a high success rate of 51% for woman of my age group.

    I am waiting for results for my fsh and Amh results and will have a Chem progesterone test done in a few weeks when it's the right point in my cycle. So I'm hoping for some good news.

    I've got a lot more research to do! I do feel that I want to fight the funding bodies. I feel quite bitter about the way funding is handed out. It may not be cancer but it is a condition we had no part in making and we should not be punished for it.

    I really have my fingers crossed for you, I hope it goes well and have a very positive result for you.

    Xxx

  • Hello, I can't offer any advice as I'm not yet at the stage for ivf however my consultant has mentioned that this may be an option for me.

    Currently I'm on my 5th month of Zoladex once this treatment has finished (next month) then I will discuss with my consultant the next steps. I had a laparoscopy in June and they found stage 3 endo, and one blocked Fallopian tube. I have no idea what ivf funding is like in my borough Lewisham but after reading your post I think it is worth me finding out.

    Thanks for posting & Please keep us updated with your progress x

  • Hi, I have stage 4 endo and I'm 40. I waited too long to go for IVF and wish I'd gone straight there, but I was the same as you and left reeling by being told it was my only option. I had one funded cycle, which failed but had lots of positives - I had good eggs for my age and had two embryos that went to bioplast, but implementation never happened.

    This meant that I did a lot more research and I'm now paying for a cycle, I've had the endometrial scratch and I had my NK cells tested. Apparently this isn't linked to Endo but my cells came up treble the upper limit. Current thinking is that NK cells reject embryos as foreign bodies, so I can take steroids (always more drugs unfortunately), after implantation which should increase my chances.

    I hope that it works for me, and I hope that you are successful too. My one recommendation is to do as much research as you can and steer your consultant where you want them to go, otherwise, in my experience, they won't try anything different, like the scratch or NK cell test.

    Good luck - time is on your side!!!

  • Hi,

    I have stage 4 endo, and had two blocked fallopian tubes, so was told to go for IVF straight away. My first cycle failed which was our only funded cycle (West Yorkshire they only give one funded cycle). I then had my tubes removed as I was told that the fluid within them is toxic to the embryos and would cause it to fail. I also had radical excision for my endo at the same time. I had a further cycle of short flare, which didn't work,but i had two blastocysts which i froze. On the third cycle we tried the long cycle and put in one blastocyst which worked. As we got to blastocyst the chance of it working went from 27% to 50% (as i was 38 at the time). Amazingly it worked and I now have a beautiful eight month old daughter. I didn't have embryo glue or scratch, as these were not offered to me.

    Regarding challenging your PCT, it is worth a go as it was in the news yesterday that NICE said that PCTs are hindering families by ignoring their advice of three free cycles of IVF. It is worth a try I think as you have nothing to lose, other than time.

    I wish you all the best

    xxx

  • Thanks for your story, it's really good to hear and makes me want to push for the blastocyst treatment.

    We went to the gp today to keep them in the loop and gain their support. We are going to write a letter to go with the GP's support letter to try and strengthen our case.

    Has anyone had much luck with massive diet changes? I've been doing some research but I feel some of it's scaremongering and verging on fanatical!

    Also, what are your views on alchohol and caffeine? For both partners?

  • I would definitely push for a blastocyst. My first cycle i had a two day embryo put in, but it was never going to work due to my blocked fallopian tubes. the second was a three day embryo, and the final was a frozen blastocyst. I wanted them to go for a blastocyst the second time. In the first phone call from the lab the embryologist said they would go for it, then at day two she rang and said they would put it in tomorrow. I was gutted. I was convinced it was because waiting for day five would have been a sunday and they didn't want to do that. I may be wrong but it was just a feeling i had, and something to be aware of and maybe ask about.

    That is a great idea getting your gp on side. i wish i had the time age wish to have challenged the PCT. i wish you all the best with your attempt.

    On my third attempt i went to see a chinese doctor for acupuncture who has a 64% success rate. She is so good she works with the NHS and Care in sheffield and nottingham. She gave me dietary advice in terms of chinese medicine which i think was key to getting me pregnant. She said the evidence shows following the dietary advice reduces the risk of miscarriage by 50%. She advised me to not eat anything cold / out of the fridge , so only things warm or room temperature. She stated in chinese medicine terms people with endometriosis have a cold uterus and eating anything cold makes this worse, and an embryo cannot implant if it is cold. She advised me to use a hot water bottle on my tummy every day until implantation to warm the uterus up to prepare for the implantation. She advised stopping all caffeine which i did, and avoiding really hot spicy foods. This is a link to her page on dietary advice. I followed this advice completely on my third attempt and it worked so I completely believe it helped me.

    zhongjinguk.com/index.php/d...

    I hardly drank alcohol before, but again as she advised against it I stopped completely.

    My friends partner had a really low sperm count and was advised to stop smoking and drinking alcohol as they said that IVF may not work as they were so bad. He followed their advice, and three months later his sperm count was virtually normal!! So I think it is worth stopping to make sure it gives you the best chance. When mine failed i looked for any reason to blame myself as to why it failed, even though it was probably not my fault at all.

    Adele xxx

  • Hi there, it is certainly a shock to hear IVF is your best route but something you need to get your head around saying that, things happen naturally !

    I've had severe endo for years, many surgeries etc and my gyni told me to try for just 6 months. She approved ivf immediately ( 2 round and 2 frozen). By the time NHS waitlist got to me , 11 months later my FSH levels altered so much I was now peri menopausal so they would no longer fund it! As we had already had our first clinic appointment there wAs no going back. As it has so few eggs left, it was about 'plumping' the few I had up nice a juicy rather than creating loads of eggs (that I didn't have) . I had 5% chance and was 38. 4 eggs produced, 2 survived the first 24 hrs. We also paid extrA and had ICSI to give us more chance. 2 eggs put back, both worked. I am one very proud mummy to twin girls who have just turned 2.

    IVF is very hard mentAlly and we are so blessed it worked for us as many others. My advise is, don't delay. Get on with it . You can always keep trying naturally inbetween. We knew what we had to do as soon as NHS pulled the funding and thankfully paid off.

    Good luck xxx

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