Hi everyone. I've recently been diagnosed with endo via ultrasound/MRI. Considered to be stage 4, including large bilateral endometriomas. My treatment was delayed by Covid-19 so I am awaiting cystectomy etc. My AMH levels when tested were I believe just within 'acceptable' range, but I am aware surgery itself will impact this. Of course I'm now left with a dilemma, as despite being currently single I very much want to have children in the next few years. Obviously nothing in life is guaranteed, but I'd like to pursue all avenues to make it happen. With this in mind, I wondered if anyone has any advice or has been in this situation? I've been looking into egg freezing and all possible options at this stage. Unlikely to be able to do anything until post op, so still at the information gathering stage. Thanks in advance for any guidance - I've found these forums so helpful!
Egg Freezing / Fertilty Advice? - Fertility Network UK
Egg Freezing / Fertilty Advice?
Hi. I'm no expert but from what I gather endo doesn't influence your eggs, just the environment. Ive got endo stage 4, my eggs are great. It's just my tubes that are useless.
I understand your worries and my advice would be to talk to the doctors and explain to them what it is that you are worries about and what the possibilities are.
Sending best wishes x
Hiya, thanks for your reply. If you have endo in your ovaries (chocolate cysts) then it impacts egg reserve . I have them both sides, and the surgery to remove the cysts can also be damaging. Its only that which has led to a diagnosis (via MRI). Haven't had my op yet so not sure what else is going on...if could do egg freezing prior to surgery I would, but I'm told that would not be possible due to the size of the cysts. It's a horrible disease, isn't it? Thanks again for responding, and all the best x
Hello. I wanted to respond to your post as soon as I read it. I was diagnosed with Endo 10 yrs ago. My treatment was Zoladex rather than having an operation, as the endo was in many areas including my bladder.
I am now 40 and having difficulty conceiving after many years of trying. I wish I had frozen my eggs when I was younger. This was never mentioned or suggested. I know I should have done more research myself at the time.
If I could turn back time, I would have done it in my early/mid 30s and chosen a time when my endo was not as active.
I know it would not have guaranteed a successful pregnancy in later life, but the eggs will have probably been better quality than they are now. The stress of ivf is intense, including the prep for egg collection. I would have been incredibly thankful if I had some frozen eggs ready for attempting fertilisation.
Everyone is different and the choice is yours. There is free fertility counselling available on the NHS. This may also help you to make the right decision for you.
Good luck.
Thank you so much for your reply and I wish you every success with your treatment. I'm currently in my early thirties and of course because of Covid-19 I'm still waiting for a new surgery date, as well as being unable to do any fertility treatments (even if it was possible pre op, which apparently it is not). I was not aware there is free fertility counselling on the NHS - I will look to into it. I figure it is constructive to do some research during this time!
Really sorry to hear your diagnosis. This is a great forum so hopefully someone with a similar condition can share their experience.
My Mum suggested I could freeze my eggs years ago and 100% wish I'd at least looked into it. 3 years after we started trying I've had to have a tube removed, my follicle count is really low and now all ivf on hold because of Covid so having eggs in the freezer would definitely have helped me. Think you can only freeze them for 10 years but that might just be the time you need.
Only you can do what you think is best and think it's great you are doing the research and asking questions. Hopefully you don't wait too long for treatment. Xx
Thank you so much for your reply and I really hope everything gets started again for you soon. Remember all it takes is one egg, do not lose hope. I was so devastated after the initial ultrasound / scan, and of course I'm still not exactly jumping for joy, but I have had to effectively reconcile that I don't have a time machine to go back and demand earlier diagnosis, and who knows, maybe all that would have meant is more surgeries and more damage? I will never know. I guess we are all fortunate to live in a time where science can, hopefully, lend a helping hand. While waiting due to coronavirus all any of us can do is research and try to keep as mentally and physically healthy as possible. I am definitely planning on egg freezing though, as I'm in my early thirties and even after removal of cysts I have no guarantee they will not return. I know how tough it is, especially as people are being very judgemental about fertility treatments at this time. It still matters, and you have every right to care. Best of luck on your journey.
Hi there I'm sorry for what you are going through and I think it's great that you are thinking now before you have any surgery about preserving what chance you will have and doing it now is better than in a few years when your eggs will be a few years older. Younger eggs are so much better. If I knew 10 years ago what I know now, I would have definitely stated ttc earlier in life. However, freezing your eggs is not a guarantee and it would be wise to discuss with a clinic the stats. Research suggests that there are higher chances to conceive from a frozen embryo but that may be a little difficult if at this time you don't have a partner. But however you look at it, having your eggs frozen could work for you when you need them to and it may be the only option but at least you've given it a shot. Wishing you lots of luck xx
Hi - thank you for your kind words. Apparently I can't do anything fertility wise until after surgery, but I think the more I have a plan in place, the less I'll panic. I think one paper said that frozen embryos have 60-70% implantation rate, which is pretty good in my books...I know for egg freezing there are fewer stats even available as not enough women have used those frozen eggs, but I'll definitely be looking into both options so I know what is actually possible. Yes the absence of a partner is a bit of a pain, especially because frankly I'd have been willing to have kids any time over the last few years with the right person - it just hasn't worked out that way yet. I guess life likes throwing us a few challenges. Thank you again so much for your suggestions, I really appreciate it.
Hi. If you look on the HFEA website, it has a lot of info about egg freezing. It will give you an ideas about what happens during a retrieval cycle, storage, and success rates. It will also give you an idea of costs for treatment, but this can vary from clinic to clinic so when everything resumes, don’t just speak to one. I have stage 4 endo, diagnosed when going through fertility treatment, and I had to have surgery before we could go any further. I had bilateral endometriomas and a hydrosalpinx and that was only what they saw on the ultrasound. I was told the risks of going ahead with treatment before dealing with my endo (which during surgery turned out to be extensive) could cause more problems in the long term. After surgery it also meant they could retrieve more eggs as the endometriomas weren’t in the way. I understand how frustrating waiting is, but I hope you aren’t waiting too long for surgery when everything resumes. Good luck x
Thank you so much for your reply and insight. My op was originally scheduled for early March as 'urgent' due to the large size and bilateral nature of the endometriomas (one apparently 14cm...the other around 8cm...and here I was thinking I'd just put on weight). Obviously with something that size in my organs they can't even think about letting me have any kind of further stimulation from fertility drugs etc, and it would probably prove a bit futile as like you say, much harder to access anything. During the op I know they plan to dye test tubes etc, so they're being quite comprehensive which I truly appreciate. Hopefully won't have to wait too long for treatment to take place safely. Thank you for the site recommendation, and I have definitely noticed some pretty wild price differences from my early enquiries!
Hi
I was diagnosed with stage 3 endo and pcos in Feb 2017 at the age of 30. I took Inofolic throught my gynaecologist recommendations and had my lap surgery in May. I was then was recommended to go straight for IVF and was pregnant by Sept. My son is now almost 2 years old.
If I wasn't ready to have a baby I would have definitely frozen my eggs, that option sadly was not given to me and I believe it should be given to all women with fertility issues. Your eggs will never be in their best shape then right now. Take about 3-4 months to work on your health, wellbeing and nutrition to get your eggs in best shape then go for it. By the time your 37 your egg reserve and quality drops dramatically so really good to look at this option.
I have told all my friends in their early thirties who are not ready to start a family to freeze their eggs otherwise they will regret it later! You can't beat the nature of your body and your can't predict the future. Good luck xx
Thank you for this advice. Any guidance on egg-friendly nutrition is also welcome!
If I were you, I would do egg freezing. Even if you don't need to do any treatment, it is better to freeze some eggs as your AMH is only "acceptable". The egg reserve will get less and less as you get older.
You can also look at ovarian tissue cryopreservation.
Good luck
x
Hiya, and thanks for your reply. I've heard vaguely about cryopreservation - I can't seem to find much info about it. I'm 31 and my AMH was tested mid-March at 17.6 - apparently that's decent for my age? All a bit confusing.
What kind of information do you need? If you message me a list of information you need, I can send it to you.
Any info you can send on this would be much appreciated!
Hi. I’m 22 and my AMH Level is 8!! Been told equivalent to menopausal age. Land I’m likely to be going through an early menopause
I’m devastated. Each month that goes by I know is nearing the end of me ever having a baby in the future. It’s like a death sentence.
I’m in my last year of uni but my whole life now will be dominated by this. I feel I’m missing out now on the care free, graduate, living in London, career ladder years emotionally, physically and financially. Egg freezing (I cannot get this on the NHS because I’m not a couple trying nor do I have cancer) will cripple my mum financially as I’ll need as many rounds as possible. But she is very kindly going to give up a lot in order to do it. Even then I’ll have the anxiety hanging over me in any new relationship (when will I tel them?), my job etc etc.
I have an identical twin sister who the consultant has said is quite like to have the sad.
My AMH Level was discerned by chance as a result of MRI/ultrasound and blood test to try to establish why I had loads of pain and gynaecology issues. They told me quite like to be endometriosis however they told me that if they do a laparoscopy to confirm it, this could affect my AMH levels even further so it’s chicken and egg for me.
I'm so sorry to hear this. I am in a fairly crap situation myself as likely to lose the left ovary (which is now 19cm) and was rushed to hospital last weekend, where they are organising a referral to an endo specialist. The whole thing is terrifying. I'm also not eligible for egg freezing on the NHS. So will be financially crippled by just one round, but I want to do whatever I can.
Hi noodle 31 ,
I’m in the same boat single although been through most of my menapause and still hopefully some eggs in there but because I’m 51 and by the time covid is over I’ll be 52 has 52 in may .i was still considering having my eggs frozen . In the early days they said frozen eggs had a higher percent change of the child having defects in later life which put me of at the time but now things are so more advanced , I think this is good if your thinking of using a saragate in later life or your waiting to meet a partner to this with , however sometimes better of going for ivf with a diner sperm while you still can I regret not doing so to be honest I guess it depends on your situation.
Fifty something XX
Thank you for your advice and I wish you every success with your journey! I am open to egg freezing, donor sperm IVF and going solo...this whole thing has been and continues to be totally terrifying.
Just makes you wish you could have things like with a husband and 2 kids has feels the norm but actually there are so many woaman doing the same nowadays sopose we have to take the opertunities while it’s there there and life has a way of sorting things out and falling place sometimes when you least expect it good luck with everything x
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