Absolutely Devastated- Cyst help!

[Megandmog]

Hey everyone.

So I have had my left tube and ovary removed.

I had a lap and dye yesterday to see whether my other tube was blocked.

However, I came round from surgery to be told I now have a 8cm cyst on my right ovary. He couldn’t tell whether it was just a simple cyst in which case he can just pop it or an endometrial cyst in which case it’s more complicated as it can stop the functioning of the ovary. I am obviously terrified about this because it’s my only chance of having my own baby.

He wants me to go for an MRI scan to see what type of cyst it is and take it from there. Does anyone have any experience or cyst removal/endometrial cyst removal and your ovary has been fine?

I just don’t know what to think, I’ve been through so much already. I just want to be able to have my own baby 🙁

[genten]

Oh bless you.

I don't have any experience with this I'm afriad but hopefully ladies here will be able to help. Also, you could message Diane Arnold (site admin) as she may have info.

I'm hoping that all goes well with your MRI and that the cyst can be removed so you can try for a family with your own eggs. Xxx

[Megandmog in reply to genten]

Thank you xx

[Ayesha1601 in reply to genten]

My daughter had a huge cyst they drained it during egg collection she's 12 days post transfer today. Keep positive xx

[SConnor]

I'm so sorry that the situation is so tough. I have had a 7cm endometrioma removed on my right ovary in my endo lap surgery and the ovary still works fine. My left ovary is fine but the tube is blocked. Still my FS thinks I could have gotten pregnant from the right one. I have decided to go for IVF and that ovary produced very nice eggs, half of the 4 that made it to blastocyst on Day 5.

The surgery can have complications though and it depends on the location etc of the cyst. My advice is to go straight to an endo specialist, and def an endo expert surgeon.

With smaller endometriomas sometimes they recommend IVF first to get some eggs collected and frozen for after the surgery.

Good luck!

[Megandmog in reply to SConnor]

Hi SConnor. This is why I am so confused because my surgeon initially saw it in the lap surgery but wasn’t able to say whether it was an Endometrioma or not. Surely he’d be able to tell by looking at it?

I have been told they will not do the IVF with the cyst still there. Thank you for your response xx

[SConnor in reply to Megandmog]

In my case my Doctor was confident it was a chocolate cyst after the second scan. I've always heard that they can't tell 100% it is all endo until they perform a lap surgery and see it, so I'm confused too as of why he wouldn't be able to tell then...

Has he requested more tests to determine what sort of cyst it may be?

Be patient, for me it was all super confusing for a while too and I felt desperate until I had a final surgery plan. Good luck!

[Megandmog in reply to SConnor]

Hello, sorry I didn’t see your message. I have been referred for an MRI scan to see what type of cyst it is. I have read the way to definitely determine if it is a chocolate cyst is via lap. Although I am not sure if you can tell just by its appearance or if you have to cut it open to see? I know he’s just being extra careful because it’s my only ovary left xx

[emmab178]

Hi

I found I had a 7cm mass encompassing ovary and tube and woke up from a lap to be told they couldn't free the ovary and so removed it.

I went private and the consultant portrays himself as an endometriosis expert. However after the op I did research and he has no BGSE training. That still makes me wonder if I could have kept the ovary if I went to a true endo expert. He should have obeyed RCOG guidelines and not touched it and left it for someone with relevant training. However I can't complain as it was private.

Is your surgeon bgse accredited and done the relevant training? If it were me there's only two consultants in the UK that I would trust to go near my other ovary to preserve fertility. Can give you the name of a good FB group where they are allowed to name surgeons and you can get people's opinion on their skill level.

The idiot surgeon also said a hysterectomy would "cure" my endo! Idiot.

I've also noticed on just ultrasounds sometimes I still have a mass on the left and sometimes I don't. I'd ask can the cysts come and go with hormone levels over the cycle?

Seems odd to have a lap and they not look at the other ovary whilst in there.

I chose to go straight to ivf but luckily they could get access to my other ovary (It's stuck behind my uterus). At 38 got 5 mature eggs, 3 fertilised and all made it to blast. Ones asleep upstairs and ones in the freezer waiting for the next thaw.

[Megandmog in reply to emmab178]

So happy you got your happy ending. I have read a lot about going to an endo specialist. Can you get that on the NHS? I don’t think he is bgse accredited. What is the name of the Facebook group? I cannot believe he said about hysterectomy to get rid of endo especially if you wanted children!!

[emmab178 in reply to Megandmog]

Yes both do nhs work. Will message you the Facebook group

[MissJoJo123]

Hey, I have endometriosis on both left and right ovaries, much more severe on the left and a hydrosalpinx which means I need my Fallopian tube closed or removed and a fibroid removed before embryo transfer. I’m going to leave the endometriosis surgery for now as I understand it can be a long healing process. I was advised to do IVF before surgery.

I managed to produce a lot of mature eggs considering I had a endometrioma in the ovary. Our plan is to freeze as many embryos as we can (just completed 3 cycles) before the operation as blood supply to ovaries can be affected and so who knows what will happen after the operation, maybe I won’t be able to ovulate, so it’s an insurance policy!

Big question for me is we have 7 frozen embryos that we froze at day 3 but I’m not sure if I have enough “in the bank!” I’m 42 now.....just want to crack on !!

[Megandmog in reply to MissJoJo123]

Do you know how big the masses are on the ovaries? My surgeon told me it would be too risky to go through with the IVF with the cyst still there.

I was thinking that might be the next step for me i.e. to remove all the eggs first. Did you have to pay to freeze them? Did you stimulate the ovary first to get as many eggs as you could? I am sending you all the luck that out of the 3 you have at least one will stick xx

[silverlini]

So sorry to hear your news. I can’t relate entirely but when I had a HyCoSy procedure they found a 4cm cyst on my ovary. It turned out to be a blood filled cyst which went down on its own over a matter of weeks. It is still there now and measuring about 2cm but it didn’t interfere with my IVF treatment.

I wish you all the best and fingers crossed for the best outcome for you xx

[Megandmog in reply to silverlini]

Thank you. I just want to get the MRI done so we know why type of cyst we are dealing with xx