Recent diagnosis of endo and decisions regarding future fertility

[0Jasmine]

Hi

I’m not sure if anyone else is in the same position as me but I thought I’d post. I was diagnosed two weeks ago with endo during a laparoscopy. I’m currently in a relationship with someone who has two kids from a previous marriage, is still going through a divorce and is looking at his living arrangements for him and his two kids as is still in a one bed flat. We have spoken before about kids as I’ve always known I’ve wanted them and when my pain started I was scared something was wrong. Having that diagnosis and also being told three times by my consultant that I should not be hanging about to have kids has really ramped up the pressure. He does not want kids right now given his situation but doesn’t know how it will look in the future (I’m guessing a couple years down the line once his divorce and living arrangements are settled). It’s causing so much pressure on the relationship and I’ve been so emotional about it all since my diagnosis. I’m guessing I’m just wanting to reach out to hear if others are in the same position. Do I look at getting my eggs frozen, hoping it happens with him in the future, as I know I don’t want to be with anyone else. Or do we split up and I gamble with finding someone else that I want to be in a relationship/have kids with? I’m 31. Thank you.

[R_elep]

Hi 0Jasmine. Sending lots of hugs as it’s such a tricky one, and just wanted to reach out.

A couple of similarities - I’m also 31 and have been thinking about these things too. I had my lap and surgery 1 month ago and have a follow up next month, so am defo going to discuss with the doctor.

Did you have your AMH levels checked as this can help give an idea of your egg health / fertility etc?

I’m looking at getting my eggs frozen, because I’m 70% ish sure I want kids, but honestly it’s such a personal decision.

With regards to the situation with your partner, it sounds like you really do love him and that it’s worth fighting for. Maybe just an open discussion with him might help give clarity? Sometimes I find making a list helps get my thoughts in order when I have massive decisions like these! 🙈

All the best and hope it all works out for you! X

[0Jasmine in reply to R_elep]

Thank you for your reply and reaching out. That’s great you got your lap done, was it nhs or private? I was private but paid by nhs so nhs follow up but no word yet on when. I’ve not had that checked, can that be through your gp? I think it sounds like a good idea and maybe gives you some piece of mind knowing you’ve done that. Again I’m not sure who is best to discuss that with? Gp has been helpful but gynae not so much. I saw them twice over two years and was told it wasn’t endo. I might see if I can be transferred to a different gynae service perhaps. A list sounds like a good idea thank you! He shuts down and withdrawals with these discussions which again makes it harder. Thank you and hope your ok with your recovery xx

[R_elep in reply to 0Jasmine]

No problem! Mine was private as I have insurance through work, but I ended up paying for some of it too. Before my surgery the doctor advised to get my AMH checked just to give him an idea of my egg count etc. But this can be done at any stage. I’m sure the nhs could do this but not 100% sure and might be worth asking your GP.

My follow up is with the surgeon who did the lap but again this might just be because it was done privately that I get a follow up?

I totally understand - it’s been tricky having these conversations with my partner too, especially as he wants kids and everything always feels so uncertain with whether it’ll be possible. But there are loads of happy stories out there and even in the messages below so got to stay positive!

[Roobs33]

Heya,

Sorry you’re going through a difficult time and thinking about difficult decisions. Some people find conceiving fine and others end up needing assistance. I had my 4 year old daughter when I was 29 and never new I had endo. She took 1.5 years to conceive. I only got my endo diagnosis whilst trying for another baby in 2020. I’ve since been through 2 surgeries, an MRI and one full round of IVF. The last transfer worked but sadly ended in miscarriage. I’m about to do another round in July as have no eggs left from first round. You could get some simple fertility tests done on the NHS which will look at your egg count and check if you’re ovulating. And then if I were you I would do a round or two of egg freezing. I think they say once you are over 35 the egg quantity and quality decreases. It’s so hard having a time limit on it, especially when having endo too! I still need bowel surgery but am hoping I can have another baby first. I hope you are able to talk things over and work out a plan. Wishing you lots of luck xx

[0Jasmine in reply to Roobs33]

Hi, thanks for your reply and sorry to hear about your difficulties. I will definitely look into egg freezing. Was this hard to organise? Did you find it difficult with fluctuating hormones? It is so hard we need to make these decisions and then it does feel like it takes over the relationship. Things do work out in the end though. Thank you ❤️ Xx

[Roobs33 in reply to 0Jasmine]

I haven’t done just egg freezing as had the eggs transferred straight away. But it would be like the first part of IVF. The stimulation hormones I did find worsened my endo pain but did go down after egg collection. It might be worth just calling up a local clinic and getting some information about it or looking at their website. I don’t think you’d be able to do it on the NHS but I could be wrong. IVF has been quite all consuming especially as it hasn’t fully worked yet, but hoping this next round could be the one. Lots of people do go on to have children naturally too. So you could just try and get a few eggs to have as a back up. I would get your egg count/quality checked (which is free) and then you will get a better picture of everything. I hope everything works out well xxx

[Paddymam74]

I was diagnosed at 27, had my son at 35. My mum was a midwife and said there were loads of people come through with endo on their notes over the years which made me feel much better. I would go on zolodex to shut your system down to give it a break which is what I did. Do t put pressure on you all and wait a couple of years. Focus on your health and relationship and don’t panic. You still have lots of time. Good luck x

[0Jasmine in reply to Paddymam74]

Thanks for your reply. I’m glad to hear your story. That does make me feel better knowing that. It’s so hard because you do feel like there’s very little support or guidance especially after a diagnosis. Thank you xx