Endo and fertility treatment

Hello

I wondered if anyone could shed some light on this for me.

I have Endo and we are currently starting the process of fertility treatment.

my sister has been through it and ended up having IVF. she can only tell me so much as she hasn't got Endo, I wondered what are the steps / treatment they offer for someone with Endo?

will I have to have another lap. is there a treatment they try before ivf, will I jump straight to IVF?

any advise would be much appreciated.

TTC for 4 years now with no joy and u don't seem to get answers from doctors and the wait just to know the steps is killing me.

Thank you in advance. xx :-)

12 Replies

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  • Hi There!

    I'm happy to share my experience with you, I have endometriosis and as a result couldn't conceive naturally after trying for years. I went through the process of fertility treatment on the NHS but first you have the option to have upto 3 cycles of IUI. I did this as I wanted to take every chance given to me, I did it 3 times and it never worked but the overall chances of success for somebody who doesn't have endo is less than 15% anyway. So I moved onto my first round of IVF, the hormones overstimulated my ovaries and they collected around 24 eggs, which went into incubation (we opted for extras such as ICSI and an embryoscope at Manchester CARE) and from this we got 5 blastocysts. I had one blastocyst implanted and the rest were frozen and I'm very happy to say that 9 months later I had the most beautiful baby daughter. So please don't worry too much I'm proof that IVF works for somebody with endo. IVF is a tough process to go through physically and emotionally but its also an exciting journey and it will be totally worth it in the end! I wish you all the very best and happy to answer any questions xx

  • oh wow thank you so much for sharing and I had a tear in my eye reading that as I don't know anyone with Endo let alone Endo and going through fertility treatment.

    so so happy for u that it work and u now have a lovely daughter.

    your story has literally given me hope...

    so the IUI - what is that? and how long does that take? would u suggest doing it or jumping straight to IVF if offered it?

    did the dr's say that the only problem they could find in you and your partner was the endo? was everything else ok.

    my boyfriend had his sperm test about 4 weeks ago and we have been chansing and chasing for results for them to tell us they have lost the results and have no record of them, so on the 12th Jan we have to go and do it again ( different hospital ) 16th I have my 1st blood test and 25th my second once they have been done I have to call my hospital and make an appointment with the consultant!

    I really hope u don't mind answering my questions its just such a relief to find someone with a similar story.

    what were the time frames like for waiting for treatment etc...

    thank you so much for sharing.

    x

  • Awe thank you and your more than welcome i'm happy to help with your questions. I didn't know any with endo going through IVF either. From the initial referral it took approx. 4 months for an appointment at the fertility clininc. You are offered IUI which is intro uterine insemination (have a quick google of it) and IVF on the NHS, you can skip the IUI and jump straight to IVF but if it doesn't work you cant return to try the IUI, they prefer you to try IUI as its less invasive (well that's there opinion!) and cheaper, you get three attempts and each cycle of IUI takes a month. It is worth doing then you have tried everything but the success rate is very low, saying that it worked for my friend on the 3rd attempt and she has polycystic ovaries.

    The IVF treatment takes approx 3 months, you need to give your body a little break from all the hormones after the IUI say a month or two then when you start IVF they have to completely shut down your cycle and put you into a fake menopause this takes a month or so, then your system is rebooted with a fresh dose of hormones which makes you superfertile and produce loads of eggs (I got 24) you then have to go into hospital for the egg collection procedure, they grow your eggs in incubators to try and get them to a blastocyst which is the most fertile egg with the best chance of implantation, this can take anywhere between 3-7 days, then you go back into hospital for the implantation and go home and put your feet up. They give you a blood test to confirm a pregnancy because a home test will not give accurate results because of all the hormones in your body.

    Don't worry too much about the sperm test results, you only need one to fertilise your egg ;) and my partner had a few of these throughout the whole process and the results varied a lot. For some reason drinking a bit of guinness and eating a lot of fish seemed to really help boost the results, something to do with iron and omega 3 I think.

    This is a very brief overview, there is obviously a lot more involved, but once you start to look into this I'm happy to answer anymore questions. I'll never forget what the nurse said to me in the clinic when I started IVF, she said I know you've got your problems and IUI didn't work but it doesn't work for a lot of people and I'm telling you now this IVF is going to work for you I just know it. Going into this with a positive mindset really helped! And I have every reason to believe that it will work for you too xx

  • Ahhh thank you so much .. I'm getting so emotional reading it but in a good way.lol

    what sort of questions / tests do they ask/do on our first referral?

    I'm scared we wont get accepted for any treatment I don't know why I am worried about that but I guess all sorts are going to go through my head.

    did u find out u had Endo before looking into why u wasn't getting pregnant?

    I'm so sorry for all the questions lol

    do u find that your monthly period sends u into a crazy mental woman.... mine does... I don't know if that's due to the endo or just me but im worried im gonna be even worse having the treatment... regardless of that I no doubt still want the treatment lol but for like 2 weeks before period I am horrible / emotional wreck.

    did u say u r from Manchester .. im from Essex... im hoping that the waiting times aren't gonna be much different.

    xx

  • At the first appointment they ask how long you've been trying, how often you do it :@ any health problems, what you know about fertility treatment. They will give you both blood tests etc. If you have been referred there is no reason that they wont accept you so don't worry. Before you start fertility treatment you usually both have to attend a counselling session to prepare you for the ups and downs of treatment, this is nothing to be scared about and is actually a good way to have an honest discussion about your fears and expectations. There are also a lot of legal forms to sign, should god forbid anything happen to either of you what would happen to your eggs/sperm etc After this you are booked in for your first round of treatment usually IUI. I've had endometriosis for as long as I can remember, i've had lots of operations but as you'll know there is no cure and its about long term pain management and yes I go crazy once a month, during the treatment I went extra strength crazy with all the hormones not to mention emotional because of the sheer stress of what you are trying to achieve but if you have an understanding partner you'll get through it. I'll be honest with you it is a difficult process to go through, it takes its toll on you both physically and emotionally but you will get through it and the end result will make everything worth it. I'm from Manchester, hopefully the waiting times are not too different but because of our different postcodes you may find you get different treatment options, for example I only got one round of IVF for free on the NHS, but people in a different post code area get three rounds of IVF for free. Hopefully you'll be in the latter post code! xx

  • oh joy - cant wait to go extra crazy... lol

    the counselling session is a good idea....

    my sister has had two rounds of IVF... There wasn't anything that they could pin point that was wrong with either of them , the first one failed , but she didn't want to wait for nhs again so she paid for it.... and it worked.... then once my nephew was 9months old she fell pregnant naturally totally unexpected ... so looking at both my nephews proves just how worth it is..... and hearing your story makes me feel even better about it.

    i'm not sure how many chances she got free on NHS ill have to ask her....

    we started trying 4 years ago .. but around the same time I kept getting so much pain after sex I was rushed to hospital twice with it... first time they ruled out my appendix bursting and didn't bother looking in to it... second time they looked into a bit further and turned out I had Endo, had 2 laps .... ( 1st one they didn't get it all ) and then that was basically our answer to why I wasn't falling pregnant .... back then we were going to wait till I was recovered from op then go sort treatment but then my partner had an accident at work that took a toll on him and it wasn't fair to put him through the stress of IVF at the time... so we have waited till now to actually do something about it.

    I just hate it as every month my period symptoms are basically the same as pregnancy ( so I've read) and then bam..... clearly not pregnant :-(

    Its the waiting that I cant stand.... as prob the same with anyone.... but hopefully it will be all worth it....

    I wont be mentioning the blood test to my BF as he will panic till the day as he is petrified of needles. lol

    xx

  • That's great news about your sister you often hear about people getting pregnant naturally after IVF it's mad isn't it?!

    The counselling is mandatory and it's only one session although you can have more if you need to. It sounds like you'll have a great source of support in your sister as she'll understand what you'll be going through. Oh no can't believe he's scared of needles!!! All the hormones you're going to need will need injecting in your stomach or leg my partner used to do mine as I couldn't stomache it myself 😱 The waiting is a bit of a killer but once you start the process of fertility treatment it's all a bit of a roller coaster & things move quickly. I hope your appointment comes through soon and I promise you it will all be worth it in the end! Xx

  • I am very happy to share my experience with you. It is a very long time before I was diagosed with endometriosis. I could still remeber how sad I was when I heard the news, so was my family. They began to find a way to cure my disease, and many times trial did not seem to be helpful. Therefore, my family wanted to cure my pain with some other treatments like home remedy. And it turned out to be effective.

  • Well I don't have a success story to share. But yes before u are sent of for ivf u might need to go through a lap to diagnose what stage you are . So that they can clean as much they can. Bcoz d endo kinda secretes some bad enzymes which are detrimental towards d embryos. Once u are there u can go straight into IVF.

    I personally went through 4 cycles .

    1st cycle-Bfp but miscarriage @9week

    2nd IVF & 3rd ivf- bfn

    4th cycle- bfp but became ectopic 😫

    But yes there are many people whom I know have got pregnant easily and some have taken longer than others.

    Just know that it's a an unpredictable path and things can change drastically. Just stay strong and positive.

    Sending u positive vibes🙏🙏

  • thank you ladies ... so so much for sharing... yeah my sister went through it but it was 4 years ago now and she cant remember much but she is really supportive as she does remember the stress and the worry.

    I feel like I am prepared but I also know that im probably far from prepared which scares me but like Endo-sucks says it hopefully will all be worth it.

    I'm just itching to get these blood tests out the way so we can move on to the next step.

    RoseLee-123 - did you fall pregnant after the Lap then?

    I really am taking all the positive vibes in that you are sending me.... and I pray to go this time next year I can share my success story with others cos u have no idea how much hearing success storys make me feel thank you all soooooo much

    xx

  • Good luck with your appointment Nic let me know how you get on you'll probably have more questions after your first appointment! I went in not knowing very much about fertility treatment but you soon become quite knowledgeable as they give you lots of information. Go into this with a positive outlook and take it all in your stride, with a supportive partner and family behind you, you can do this! xx

  • Thank you so much.... I'm going in with a positive attitude .. I just hope it lasts.

    I'm sure I will have loads more questions so be prepared. lol

    xxx

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