Hi, I was diagnosed with endo in summer and have been referred for ivf after ttc for 2.5 years. At my baseline appointment my endometriomas have got larger, one on each ovary (I also have other lesions seen on mri)
What treatment did you receive for your endo? I only have 9 follicles, I've not got my amh results back but I'm not hopeful.
I'm in so much pain but I'm scared surgery will lower the amount of eggs I have left.
Please help, I'm so confused, sad and just feeling lost at the moment x
Hello Endo23921,
I’m sorry to hear what you are going through, I am in a similar situation (see my post if you wish) and know how upsetting and lonely it can be struggling to conceive with endo. My consultant advised freezing some eggs before doing any type of surgery, just in case surgery did affect egg supply. I haven’t got any further in my journey yet, I have an appt in a couple of weeks to have another scan & do AMH test. But that could be something to mention to your consultant? Freezing eggs almost as an insurance policy.
I’m sorry I can’t offer any more help at this stage but I just want you to know you’re not alone and I understand how you feel x
Hi there, I'm sorry to hear that you are feeling like this. I've been where you are and it's not great x
Having said that, 9 follicles is great! I've never heard of anyone's eggs being affected by endo surgery so I'm not sure if that's possible or not? I had 3 laps for my endo and no-one ever mentioned that as a possibility.
My experience was that surgery really helped me and was life changing but the pain came back after about a year each time. Zoladex injections gave some relief and pain free months which were much needed but surgery was by far the best treatment for me. If you do have surgery and want to TTC, I'd suggest making a start as soon after the lap as possible. Let us know how you get on x
Hello
I was diagnosed with grade 4 endo this year, I had a laparoscopy to diagnose and treat. This was after 3 rounds of unsuccessful ICSI so I felt like I had nothing to lose at this point.
As others have said egg freezing may be an option if you decide to go down the surgery route.
Another thing to investigate might be an ultra long protocol of IVF. I've just started this so no idea if it will work for me or not but there is some promising research out there. It involves three months of prostap/decapeptyl or similar before starting stims, and it's to shrink the endo. Could be an alternative to surgery, or like me, something after surgery.
Thank you all for taking the time to reply!
HortC11...have they said how egg collection would work around cysts? I will definitely think about egg freezing because that is my biggest concern right now! Good luck to you, hope your appointment goes ok!
Completer40, really I got the impression from the ultrasound tech that it was bad only having 9! Is such a confusing old place haha! I read that your chances increase soon after a lap sometimes. I'll keep you updated, I hate it when people don't return with an outcome!
Reda28, so sorry to hear about your 3 unsuccessful rounds...I really hope that you get a baby in your arms soon! That's really interesting about the protocol, I hope it works!
Just an extra note that I'm back at the clinic on Thursday for my partners semen analysis. So will try and get my amh results then. I've also gone back to my gp about the endo pain after the clinic said my local hospital would need to do the lap. She was ace and referred me to my local hospital straight away. I rang them after a week to see where my referral was and she said no the clinic should have referred you to the endo clinic....a lot of going back qnd forth but what I would say is, don't be afraid to ring up and ask! If you can't sleep at night get on the phone and ask the question, you will feel better for doing it! X
Hello! I would like to give you some hope. I have severe endometriosis and adenomyosis and had endometriomas in both ovaries (unfortunately the largest one came back a few months after my surgery and I still have it!). I had been struggling to conceive and have had recurrent miscarriage. I did IVF before surgery and froze the embryos. I then had Decapeptyl/ Zoladex for 5-6 months before excision surgery for my endo. I had my surgery and did a transfer 3 months after (it took me longer than expected to recover from my surgery!) and I will be 22 weeks tomorrow! Please don't lose hope and if there is anything I can help with, please let me know or PM me. My consultant said that my endometriosis was causing high levels of inflammation which can affect implantation, so I am so glad I had the surgery, as the pain improved as well! Hope this gives you some hope xx
If you don't mind me asking, how large are your endometriomas? Sometimes if they are too big they cannot access the ovaries easily gor egg colllection and they need to be careful not to puncture the endometrioma whilst collecting the eggs. I had several endometriomas on both ovaries, the largest measuring around 4 cm and they managed to do the EC. Good luck and I am here if you need me! X
Hi,Thanks for replying, congratulations to you thats brilliant news!! Its always lovely to hear success stories, sorry you had to endure so much but lovely to hear a story that helps keep me hopefulness! One is 7cm on my right ovary and the other is 1.5cm on my left! Do you mind explaining the egg collection process to me please? How do the meds affect your endometriosis? I'm just wondering if it would make it get larger or more painful, this last few months I've had more and more pain on my right side! X
The endometrioma on your left ovary is very small, which is really great news! I think the small endometrioma I had on my left was 2 or 2.5 cm and it didn't affect IVF at all 
I am not a doctor, but I will share with you what my consultant told me. There are different IVF protocols, depending on each woman's case. He mentioned long and short protocol for me and, although for women with endometriosis he often recommends a long protocol with down regulation, I suffer from PCOS and therefore there was risk of OHSS (which I got anyway!) and that is why he decided to put me on the short protocol, which I think meant less drugs and during a shorter period of time.
I am not going to lie, the IVF medications made my pain much worse and my endometriomas got a bit larger but not massively. However, it was all worth it! I decided to do IVF first (and have excision surgery afterwards) because I was told that if they were to remove/excise the endometriomas it would affect my AMH and I am 37 so time is against me. However, I know other girls with endometriosis that did IVF and the meds didn't cause any major changes for them, so I think we are all different.
I also had other lesions seen on MRI and my consultant seemed to think those were causing me the pain more than the endometriomas, but I am not sure, to be honest. Are you under the care of a BSGE specialist endometriosis centre?
I understand how you feel. I think living with endometriosis is extremely hard. It is just like an invisible disease, you look fine from the outside but the pain is killing you inside. It affected me psychologically so much. In addition to causing me infertility, I struggled to cope with excruciating chronic pelvic pain which prevented me from even doing normal daily life activities.
Again, I am not a doctor, but I think 9 follicles is good! I had 12-13 at my baseline scan but more appeared with the meds!
Sorry for the very long post! Sending you lots of hope and positive energy and I am here if you need me. xx
Sorry it has taken me so long to reply....had one of those weeks 🤣OK so fingers crossed I get a bit more luck out of my left ovary then!
Thank you, I think you and another person mentioned protocols, I will definitely make a note of what you guys have mentioned and ask lots of questions!
I think with all the pain we experience anyway we must be fighters taking meds that could make it worse but like you said its all worth it. I'm open to them doing egg collection before surgery but will see what they say at my next appt in January! I'm not under a centre no, did your local hospital organise that or the fertility clinic?
I'm 30, the docs keep saying I'm young but it doesn't feel like it when you're having an endo flare up haha! Sorry you suffered so much, its such an awful disease!
Oh right, the ultrasound tech didn't make me feel too confident but I think I sometimes think too much!!
Thank you for all that info, we have both finished the year with all our tests completed. I also found out about further lesions, fibroid and polyps from my mri...so hopefully 2022 is the year of treatment and maybe a positive! Good luck to you, merry Christmas and what a year next year will be for you!!!
You are very young indeed, so that is very good news! I know when you are having a flare everything looks very negative, but age is on your side!
Regarding my endometriosis surgery, my fertility clinic just recommended me to do a lot of research on the surgeon and make sure s/he was a good endometriosis surgeon, but one of my best friends is a surgeon herself and she advised me to be referred to a BSGE accredited endometriosis centre and have excision (not ablation) surgery under the care of a multidisciplinary team. She reiterated this was very important, especially in my case, as the MRI showed lesions not just on the ovaries, but nodules elsewhere (i.e.: bladder and near my bowel). I went to my GP and asked to be referred on the NHS to a BSGE endometriosis centre, which they agreed to do.
Good luck with everything and let me know if you have any questions or need anything. Merry Christmas and all best wishes for a very happy and positive 2022 x
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