ovarian cysts

[white61]

hi all, just wanted some advise or just someone to chat to. So I’ve been quite unlucky and I keep getting ovarian cysts. I am planning to have surgery in 2 months time for the cyst to be removed, on the scan it was mentioned the ovary looked sticky as in the scan it hardly moved and it shows there’s scar tissue behind my ovary etc - could this be endo? They think the cyst is an endometroma. I have surgery a couple years ago to look for endo but the surgery was ‘clear’ and showed no signs of endo, but I have all the symptoms and I’m in agony so much, I take tramadol and often it doesn’t even help the pain and I take codeine when it isn’t so bad but they won’t give me anything stronger … it all just feels like a headache and I’ve been advised to freeze my eggs before surgery as I only have one ovary left and when they do surgery it might be worse then they think and of course there’s a risk that they might have to remove my ovary if needed as a last resort if it looks awful. I’m only 25, any advice on freezing your eggs what was your experience like ? I’m going to have to remove the coil and stop taking the pill for it which I am so so scared about as I know the pain will be so much worse when I’m not on contraception … feeling very anxious and alone, any advise or if u relate it would be nice to know - has anyone had their eggs frozen when they have an ovarian cyst? Or were u advised to do it after surgery to remove the cyst?? Thank you xx

[AR2008]

Hi, I can somewhat relate to you. I’m nearly 25 and I had a endometroma cyst removed in Jan this year. As well as removing the Endo they found elsewhere, they also did a adhesiolysis procedure because my affected ovary was attached to my colon. Some of my other organs were attached too, something I wasn’t aware of pre surgery. If your cyst is the same of mine, then you have endometriosis- even if you don’t have any elsewhere.

My surgeon gave me the impression that the adhesions I had were common for an Endo sufferer. Since surgery I’ve realised that I think the adhesions possible played a big factor in the discomfort that I felt. I’ve tried loads of medications, mefanamic acid (didn’t work for me), Co-codimol (didn’t work for me), etc. The only one that works for me was Naproxen. But then again, everyone is different.

I spoke about egg retrieval with my doctor too because my cyst was large and there was a fear that I would have to have my ovary removed. They advised me to wait until after the cyst was removed as they felt more hormones needed for egg retrieval wouldn’t be good for me. And I’ve heard it’s tough on your body and I already felt crappy as it was!

But at the end of the day, go with your gut and do what you feel is best for yourself. I can appreciate the massive decision you have to make as I had the luxury of having both my ovaries when I was making that decision. Wishing you the best of luck with your upcoming op!

Don’t ever feel lonely and please reach out if you need anything. Us 25 year olds Endo girlies need to stick together (just like our ovaries do to parts of our body they are not meant to be stuck too! 🤣) xx

[white61 in reply to AR2008]

Thank you so much for your reply, I worry like you say that if I get my eggs frozen before the surgery what if the cyst gets bigger or worse?! The reason I’m on the pill and the coil is to stop me getting ovarian cysts - it hasn’t stopped it but I think they are potentially less in size because of it. So I’m worried that what if I go to get my eggs frozen and the cyst gets bigger because I’ll be on no contraception and then i won’t be able to freeze my eggs and I’ll be worse off🫠 so many decisions but I think it’s a joke how having our eggs frozen isn’t on the NHS - like I didn’t choose to get ovarian cysts im just unlucky & yes with the scan report saying my ovary looks sticky and looks like I have scar tissue behind my uterus I think that could possibly be endo and im also worried what if it’s worse then they think when they do the surgery and what if my ovary is damaged or removed, I know it’s a tiny cyst so unlikely but when I had a cyst when I was 16 it was small and she said she just about saved it… I have staples in my tube as well to stop it twisting as what kept happening is it would twist, I think if I didn’t have the staples in I would of lost my ovary by now… oh my sorry for the rant but it’s all so confusing and there’s so many possibilities…. 🙃🤍 always here for you too and thank you for the response and sorry you’re going through that xxxx

[LME5 in reply to white61]

Hello lovely, egg freezing is offered on the NHS. My gynaecologist recently told me that the option is available to endometriosis patients whose fertility is at risk. There might be more criteria involved in terms of qualifying for the treatment, but from what you've described, I would imagine you would be put forward. I think egg freezing availability is dependent on each area - maybe not all areas offer it. Speak with your GP / gynaecologist about it

[Rookery17]

Hi I would defo say if you can do that and freeze them do it! I have endemetrioma on one of my overeries and Endo on the other side due to where the eggs were growing above the cyst which meant they couldnt access my eggs safely same on the other side apparently each cycle is different but in this case the follicles were growing above them and they don't want to pierce them for obvious reasons. So if there small i wud go ahead and do it and don't wait also another thing to consider if they remove cysts they well affect egg count I had my drained but it did come back good luck!