Endo cyst? Surgery or no? IVF : have a endo... - Endometriosis UK

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Endo cyst? Surgery or no? IVF

ChloeL934 profile image
9 Replies

have a endo cyst on left ovary, in January I was experiencing pain in my lower back, left side, after ending up in A & E they thought I had kidney stones, so sent me for a CT scan, which showed my endo cyst has got bigger, it’s now 5cm.

At my last fertility appointment my consultant was more than happy to do the surgery, however it wasn’t big at that time, just under 2cm so I hoped for the best, and hubby was given time to give up smoking; he’s now 6 months smoke free, and we are awaiting for our appointment with same consultant at the start of March my dilemma is:

Do I have the surgery? Or should I leave it? I know IvF is the next option but can the IvF go ahead with the 5cm cyst, I want to give myself the best possible chance and be in the best possible way as I only have one round on the NHS, nothing was mentioned about my ovarian reserve when I had the bloods and other test? I’ve heard surgery can make your ovarian reserve lower, but equally leaving the cyst can damage the ovary aswell.

Please can anyone give me some advice or experiences?

Much appreciated xx

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ChloeL934
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9 Replies
Mara_Simba profile image
Mara_Simba

I would ask to have you AMH tested to help you in your decision. I had bilateral cysts last year, 4cm and 2cm then had them removed followed by 3 months of zoladex before trying a round of IVF. I knew my AMH was very low before the surgery and it did reduce a little but I had to go for the surgery first because the pain was unbearable. My IVF wasn’t successful and I’m now waiting for egg donor IVF. There is conflicting info as to whether you should have endometriomas removed before IVF or not but despite my experience, I would still have had the surgery first if I did it again otherwise I think the IVF stimulation would have been unbearable and there is a risk they puncture cyst when collecting eggs.

ChloeL934 profile image
ChloeL934 in reply to Mara_Simba

Thank you for replying,

I’m leaning more towards getting it removed, she hasn’t mentioned nothing about anything being wrong with my blood tests, told me all my results came back ok, will double check with her.

I know there’s risks but I’ve also heard leaving it there can damage your ovary too xx

Samaher87 profile image
Samaher87

My Endometriosis excession specialist told me that if a cyst is an Endometrioma than it eats away at your ovary. If it’s 2cm then it’s still manageable but 5cm is too huge and should be removed my surgery. I removed my 5cm endometrioma 2 months ago and I feel so much better now.

ChloeL934 profile image
ChloeL934 in reply to Samaher87

Thank you for replying,

Yeah I’m leaning more towards getting it removed, I know there’s risks, but if I leave it, it still damages the ovary. X

Samaher87 profile image
Samaher87

Please get it done by excession and not ablation, the risks are very minimal if you go to a endiometrosis specialist which you can find in the bsge website

Oh that sounds awful. If it's an endometrioma I am sure you need removed to preserve fertility but definitely only with a BSGE surgeon!! Are you under the Bsge team as you clearly qualify?

CE_88_14 profile image
CE_88_14

I would get it removed and any other endometriosis that they find. I went through an IVF cycle with a cyst on my left ovary and it failed. We never got to egg collection as there was nothing to collect as the ovary was so over stretched and stimulation medication didn't do much except make my pain worse x

UnicornKisses profile image
UnicornKisses

Hi,

Removal of endo cysts is controversial because every time they do it, there’s a chance they will be removing a portion of your healthy ovary, therefore lowering your ovarian reserve. I had one removed in October that was 4.6cm. My IVF (max stim) cycle started in January and by my first Ultrasound my body had formed three new endometriomas, all bigger than the original one. My cycle was ultimately unsuccessful, however, I did produce four eggs, most of which came from the side with the endometriomas. The “healthy” ovary only produced three follicles, while the other side produced 9. We are planning on trying a “min stim” round of IVF. I have not yet discussed the endometriomas with my doctor (he is two hours away from where I live), but he sent me a very detailed letter about the next try, without mentioning a repeat surgery. I don’t know if he will recommend another surgery or not, but it’s seeming like “no.” If he doesn’t recommend it, I will leave them in there.

L2213 profile image
L2213

Hi Chloe, I also had an endometrioma on one of my ovaries after ending up in hospital in horrendous pain after a rupture. I was initially sent straight for ivf but when I had my baseline scan it had grown and was 10cms so I had surgery to remove it first. Really glad I did as pain was significantly reduced and I was less anxious about another rupture. I then waited another 2 months after surgery and started ivf. Our first 2 rounds haven’t been successful but we were lucky enough to have frozen embryos so have only been through one egg collection and still have more opportunities with our frozen embryos. I just wanted to say good luck and whatever you decide I hope it goes well for you. If you want to chat or ask questions feel free to message me xxx

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