So many concerns about life affected by endo

[astrocat]

Hi everyone, this may turn out to be very long but I need a bit of a splurge of all the things I've been worrying about...

I was diagnosed with probable endo and endometriomas last January, then took ages to have scans etc because of covid. I finally had an MRI before Christmas, which showed stage 4 endo on various organs including my bowels, as well as the cysts. It also showed that I have adenomyosis, which was a bit of a shock and has worried me more because it's less treatable. I have terrible pain from my periods, which is now more under control as I am taking a double dose of desogestrel every day. Although I think the hormones are affecting my moods - I definitely seem to be more depressed and irritable. I am on the waiting list for surgery, but have been told it might not be until the end of this year.

I am now really worried about fertility etc. I am 29, living with my partner in London, and have recently started a new job. We know that we want children, but in an endo-free world we wouldn't have started trying for at least a couple of years. We wanted to try and buy a house before this, which involves some more saving up, and then leaving London (so finding jobs elsewhere) because we could never afford to buy here. But now I am really worried about waiting too long and then not being able to get pregnant. My mum and grandma both had trouble conceiving (it took a long time, and they had miscarriages), probably due to undiagnosed endometriosis. I am supposed to be having the mirena coil inserted during surgery, but I have heard that fertility is best straight after surgery so am thinking that maybe we should start trying then? I may well be 30 by that time. But I am worried about whether we can afford a baby that soon, whether there is space in our flat, and whether it will make it much harder for us to move/buy in the future. I am also worried about actually getting pregnant - what if it doesn't happen, what if I go back to debilitating excruciating pain when I am not on birth control, what if it allows the adeno/endo to progress/regrow etc. I don't know what is best to do. Would it be foolish to wait for a year or two after surgery, will I regret it in the future? Does the mirena prevent regrowth of endo and so would it preserve my fertility?

Life feels so complicated and uncertain, and I am suddenly faced with all these "grown-up" problems that I hadn't really worried about before. I would be so grateful if anyone has any advice, or can share their similar experiences. Thank you.

[Moon_maiden]

I can’t help as far as fertility, pregnancy etc., but have you mentioned all this to the consultant? Do make sure they have some sort of specialty of endo and fertility. You should be under a specialist if it’s stage 4. I hope you don’t have to wait too long 🙂

[astrocat in reply to Moon_maiden]

I have talked about some of this with the consultant, but I don't know when I will next be able to talk to him and it's taken a while for my thoughts to come together (as much as they are, at least!). I am under a BSGE specialist I believe. Thank you

[Moon_maiden in reply to astrocat]

Keep your thoughts written down, you’ll keep adding before gynae appointment. Make sure you ask as many questions as you need to. I was supposed to be under BSGE, but have recently discovered the guidelines haven’t been followed for treatment.

[astrocat in reply to Moon_maiden]

Sorry to hear that, and thanks for the advice. xx

[Minchoo]

Hi I have stage 4 endo diagnosed many years ago! Well 4/5 no surgeries so far (aside from due to a failed IvF cycle) - anyway long story short - suggest you ask them about gondatrophin agonists (gnRh) such as Zoladex and if you want have a kid now - ask for your AMH to be checked you should have few free rounds on the nhs of IVF. If your AMH is too low you may not be eligible. If you do want IVF have you considered abroad?? It’s cheaper too! Lots options here. If you can have a kid before surgery it may be the easier way? But depends what docs are saying to you! I have adenomyosis and endo too plus a frozen pelvis - was meant to go abroad for IVF but haven’t thanks to Covid

[astrocat in reply to Minchoo]

Hi, thanks for your thoughts! Are gonadotrophin agonists good for preserving fertility then? Should I ask my GP about the AMH or does it have to be the hospital? If IVF turns out to be the way forward then I hope I could get it on the NHS, but I'd really like to conceive naturally if possible. Unfortunately there's no way I can before surgery because of the amount of pain I'm in when I come off hormones. Sorry to hear about your problems, covid has made everything harder hasn't it?

[Minchoo in reply to astrocat]

The Zoladex should be given (GnRH agonist) it’s an injection in your stomach - 5/6 times in a 2 year period. It helps with your Endo and pain. You will have to take vitamin D as it can impair your bone density - they are basically putting you in menopause for a while to calm your hormones and ovaries so that your body calms down for a while! It should be done leading up to surgery. Or even IVF. I suggest having that as first point of call then if your pain subsides - maybe IVF first. But I have heard excision does help fertility but for me I know that surgery is difficult for me due to the frozen pelvis so I want to try IVF first. Covid is horrible I am just sitting and playing the waiting game - I hate that!

[astrocat in reply to Minchoo]

Thanks so much for your ideas. I hope you get some success with your IVF! And fingers crossed the covid waiting will start to improve from now...