Endometriomas on both ovaries

[Anemone37]

Hi there,My partner and I have been trying for 15 months (I'm 37 and he's 43) I had a fertility check up a few years ago when I was single and they found I had an amh of 44 with lots of follices and it all looked fine. Since coming off the pill I've had light, short periods lasting only 2 days with spotting either side. I don't know why but I always thought there might be something wrong which is why I had the test when I was single. I was shocked yesterday to find I have endometriosis with endometiomas on both ovaries (one on each) and one of my ovaries looks like it's stuck. They said I might need surgery to release the ovary to retrieve the eggs for IVF but I know that comes with risks. My partner's got good volume and motility but morphology is 2/3%. We are seeing the consultant in a couple of weeks. I keep crying all the time and it's really effecting my mental health. I'm worried this is going to go on for years but I want to remain hopeful. I know other people have it much worse so feel bad for feeling so awful about it.

We're at the start of the journey really but I'm wondering if anyone has been through similar or has any advice. Thanks x

[Connie290]

Don't compare your journey to others, just because you feel other people have it worse doesnt mean you can't hate the situation you're in😊

I found I struggled with my situation the most in the beginning because there's no plan and everything is an unknown and you don't know how long it'sgoing to drag on for. Once I started the ivf process I felt much better and like I had a tiny bit of control (not that we have any real control in this situation), but having a plan in place for me really helped calm my nerves. Sending baby dust ✨️

[Anemone37 in reply to Connie290]

Thanks so much for your reply, I do feel totally out of control and I really hope I cam feel more hopeful and resiliant as we move through the process. x

[Caranne]

Im sorry to hear how stressed you’ve been. Honesty it’s amazing what they can do, they are so skilled at dealing with these things. I have endo, my ovaries have been stuck together and have always had big cysts and they have always managed to do IVF and retrieve eggs. They might need to separate ovary so maximise eggs but sometime they don’t need to and it looks like you’ve got a good AMH which is really positive x

[Anemone37 in reply to Caranne]

Thank so much for your kind message, I am starting to feel a bit more positive that we can still do the IVF and I know my clinic is supposed to be really good. Hopefully they won't need to do any surgery but if they have to it will be for good reason. May I ask where you are at the in process? x

[Behind_Hazel_Eyes]

Hi Anemone37. I have Stage 4 endometrosis and had kissing ovaries (like what you describe). I am also 37. I recently had a lap and got the endo removed from both of my ovaries in December in preparation for NHS ivf in the coming months. I had private ivf last year with my kissing ovaries and had terrible results. I was a slow responder to stimulation....again because of the endo. I needed additional drugs to get the right amount of growth in my follicles. They managed to collect 2 eggs and both were poor quality due to the endo. I am hoping for better now that my ovaries are no longer kissing! If surgery is an option.... consider it. Yes it comes with risks but it may improve your chances! Good Luck x

[Anemone37]

Hi there and thanks for your reply. I'm so sorry to hear about your difficult experience and hope that now you've had the surgery you'll respond much better to the drugs. I will have to see what my consultant suggests on Monday and go with it. I have heard about people who have had surgery and been successful afterwards. Good luck to you too! x

[Amy2106]

I have endometiomas to both my my ovaries. Left side is only about 1cm but right side is around 6cm. I had surgery a year prior but they returned, I did have kissing ovaries and had some adhesions removed at this point too.

I’ve had 2 egg collections and never had any problems with them collecting eggs. I had to have a one off dose of antibiotics during egg collection to reduce the risk of infection. They’ve always told me if they are 5cm and above they recommended surgery. However my first egg collection only my right side responsed so I held off surgery and ended up with 5 blastocysts on my second collection.

I have a low egg reserve likely due to previous surgery and the cysts. Hope that might help!

[Anemone37]

That's really helpful to know, thanks so much for your reply. It's great to hear that you ended up with 5 blastocysts after all that. Wishing you the best of luck with your treatment!

[Anemone37]

Just an update to say that the I have decided to try IVF just to see how I respond but at the same time the consultant has referred me to a specialist for surgery. It's about a six month wait for surgery and I think I'll go mad if I'm just waiting for another six months. I thought just in case anything goes wrong in surgery hopefully they can retrieve some eggs and create embryos. I suppose at this point it's just a matter of trying. The consultant asked me what I wanted to do but she said I would need surgery, particularly as the cysts are growing quickly. I suppose I'm crying out for success stories from people who have been in a similar position. Sending strength to anyone who needs it today x