Anyone had a v. large cyst removed? - Endometriosis UK

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Anyone had a v. large cyst removed?

Noodle31 profile image
Noodle31

Hi everyone. I'm waiting on my first ever lap, stage 4 endo suspected. Cancelled due to Covid-19. I have two large endometriomas (left is 14cm, right is about 8cm).

I'm 31 - and my primary concern here is fertility. I have no children, though have always wanted them.

Has anyone here had a very large endometrioma (or two) removed and gone on to keep their ovaries and/or have kids, whether naturally or IVF? This is really the kind of thing which keeps me awake at night, the fear of losing my organs because I didn't know I had this horrible disease sooner.

11 Replies

Have you discussed this with the consultant? I’m sure they’d be able to offer advice and would help them to know all your concerns. I know this isn’t easy though.

Really sorry I can’t help re fertility as I’ve not been in your position.

Noodle31 profile image
Noodle31 in reply to Moon_maiden

Unfortunately as I have still not actually been 'treated', nobody knows entirely what is going on until the operation. I just thought I would ask if anyone has had similar experiences. Of course their aim with surgery is always to 'save what they can', but I have no new date for that surgery either. I'm also quite frustrated as my op was cancelled BEFORE the 15th April despite having been designated as urgent (2nd tier), but was presumably cancelled nonetheless because beds might be required. I do not want to belittle Covid-19 in any way, but communication has been almost non-existent - and the operation itself was cancelled when I was on the hospital ward in a hospital gown, having already been physically examined and told I was the second surgery that day...they barely gave me time to get dressed before wanting the bed back, it was that bad. Traumatic, actually. I even called ahead a few days before - and on the day - to check it was all going ahead. It is like mental torture, all this waiting and not knowing what is happening inside your own body.

Moon_maiden profile image
Moon_maiden in reply to Noodle31

I’m not surprised you’re worried and feel let down. I know the virus is understood, but when you’re anticipating an op at that point it’s a huge let down. It’s perfectly natural to feel cheesed off. I’d feel the same, I could easily have been in the same position, so sorry you’re going through this.

Hi Noodles. I can’t really help I’m afraid but I will be honest. I had a large ‘chocolate cyst’ removed, along with my ovary and Fallopian tube back in July 2017. At the time, I was unaware it was a chocolate cyst until recently. (My background is complicated). I then developed another chocolate cyst on my right ovary which was around 9cm. This time, I was referred to an endo specialist who done a huge debulking surgery and removed said cyst and lots of other endo.

I was due to start ivf last month but was cancelled due to COVID. I am unable to conceive naturally as I have no Fallopian tubes. I now have very low AMH as a result. You need to make sure you’re seen by a BSGE accredited specialist who specialises in the removal of endo. I think the reason my ovary was just removed back in 2017 was because it was a normal gynae doing the surgery, but I was aware that this would be likely to happen.

I’ve known many people and read many stories of people who have gone on to have children after having chocolate cysts removed, so it isn’t impossible. I’ve been told my chances of ivf working is 20% mainly because I am 29 and should have good egg quality. If you need to ask further questions please do not hesitate to message me.

Good luck with it all xx

Noodle31 profile image
Noodle31 in reply to Megandmog

Hi Megandmog, thanks for your reply. I'm not with a BGSE clinic (and due to the severity of this, I'm not sure I have the time to go through the referral process which I've read can take up to a year at the best of times, before actually scheduling treatment) but I plan to have surgery with the hospital's fertility expert, who specialises in endo and IVF - which I hope gives me better chances as they are aware that fertility is my primary concern. I had my AMH tested back in March and it is in double figures which I am told is a 'good sign' but of course the surgery will lead to some 'collateral damage' - but I don't think fertility treatments are possible prior to treatment for the cysts. From the MRI I was given, they are convinced I have chocolate cysts.

If you don't mind me asking, how did they not know that's what yours was prior to surgery? Is that why the general gyno opted for removal? They don't seem to have placed any questions over my diagnosis, but ordered an MRI to confirm - and I'm aware they may 'drain' rather than remove, which I would prefer if it at least affords time for egg freezing.

I'm so sorry your treatment has been postponed - this is such a horrible time. I hope everything resumes quickly and you get that much wanted baby. I'm sure after all you've been through you'll make a wonderful mum.

Hello Noodle 31,I am in a similar situation,albeit with smaller cysts,but still in the large category. I am 33 with no children and like you my fertility is my top priority.

In my last visit with the gynae over skype,I was told I would need surgery for sure this year and I started learning about it.

When you were told they would drain the cyst,are they going to excise it after?From what I have read and been told by gynae outside the UK is that draining only has very high chance of recurrence.I was told as well that it is possible to drain the cyst through the vagina,do egg freezing and then lap to excise the cysts.

I am researching all this to be able to be my advocate and ask the right questions,as I found doctors do not always explain clearly. And this forum is a great place for that. I look forward to reading replies here from women who had gone thorough similar experience.

Hi YellowDiamond, and thanks for sharing your own experience. As re. drainage - I believe this approach may be adopted so it is a two step process, and there is less damage to the ovaries this way. My first consultant said they sometimes 'just drain' as the capsule can be densely adherent, but if it isn't then they perform full cystectomy. He suggested surgery 3-4 months after for treatment of remaining disease.

The fertility specialist has suggested more procedures in one surgery - cystectomy, treatment of endo and dye test for tubes as well as a hysteroscopy to check uterus. I am very preoccupied with 'conservative' surgery so I at least have a chance to egg freeze if I need further surgery in the future.

As this was all considered urgent pre covid, I was rushed through for which I am grateful - but two cancellations while already there mean I have on two occasions got all prepped for surgery just to be sent home. Not great for a condition which is exacerbated by stress.

It seems the hospital I am with has been hit quite hard by corona so part of me does feel truly awful for being so preoccupied with this - but as I've discovered the hard way through late diagnosis, if we don't advocate for ourselves, who will?

As re. fertility, that is honestly the only thing I care about. I don't care about the size of the scar, in any way. The draining and excision - is this all in one procedure? Because I fully intend to pursue egg freezing as soon as I can after surgery, and anything which boosts my chances of success is obviously promising. Have you had your AMH tested? I wish you good luck with your own treatment, and sorry for the babble. I'm in a babbling mood today, clearly!

Megandmog profile image
Megandmog in reply to Noodle31

Hey Noodles.

It’s good your with someone who specialises in endo. That’s the main thing. I was told I had my cyst in November and was having surgery in the January, but luckily for me my hospital had just become BGSE accredited so was done speedily.

I’m pleased your AMH is in double figures. That’s very good. I asked, but was also told they couldn’t do egg collection with the cyst in situ because the drugs stimulate the ovaries and would cause more disturbance and also there’s a possibility they could rupture the cyst on egg collection.

I don’t mind you asking. I had severe PID in December 16 and had an abscess on my ovary. Once this was sorted and I recovered a cyst then developed which I was told they thought would happen. Because it was so big and technically you don’t need two ovaries they decided the best thing to do was remove it, considering the damage which had been done to it anyway from my severe infection. To be honest, I’d never heard of a chocolate cyst/endo cyst until the one appeared on my right ovary.

I hope we get our much wanted baby too. They put me on 3 months of Zoladex after my debulking surgery in January 2019. I had an AMH test in July which came back at 0.6 so we’re told we’d need to use an egg donor, so we went to go ahead with that and they done another AMH test in the October and it had gone up to 2.4 so not sure if that’s coz the Zoladex was still in my system.

I wouldn’t recommend they drain it. I know it preserves fertility but there’s a much higher chance of reoccurrence, unless you drain it then go through ivf immediately after.

Good luck with everything xxx

Noodle31 profile image
Noodle31 in reply to Megandmog

Thank you for being so candid. I'm trying to do my best to do the same, in case it helps anyone else.

As re. your AMH, if it is at 2.4 then perhaps that provides a gateway to try a different IVF protocol and may certainly give your success even more of a boost. Have they given you any indications? I have heard a few stories (albeit few of them) where a woman sees her AMH actually rise in the 6-12 months after surgery, rather than fall. The cyst can be 'holding you back' and once inflammation decreases you are in a better position. This is apparently particularly true in those with a reduced ovarian reserve. I've been reading a lot of medical journals (almost feel like I am becoming a gynaecologist) and this seems to be a big finding. I can send along some info if it is at all handy.

As re. drainage, I know they tend to come back after that, but particularly with the larger endometrioma I would rather limit further damage if at all possible, at least until I have had the chance to egg freeze.

My AMH was 0.6 after removal of the cyst and it then went up to 2.4 10 months after the cyst removal. All AMH blood tests I have had have been after cyst removal. I’ve no idea what my AMH was before! I’m still hoping it’s gone up further since October but I don’t know. I’m too scared to get it re tested now if I’m honest. But I’ve also read that endo can reduce egg quality. It’s all so worrying.

Would you egg freeze quite soon after the drainage? I had an op last April to remove more endo (it was a 2 stage op) and I had to have another operation in December last year and my endo consultant said he was surprised at how much endo had grown back 🤷🏼‍♀️. Thankfully no further cysts just yet! xx

Noodle31 profile image
Noodle31 in reply to Megandmog

I basically plan to egg freeze as soon as it is safe for me to do so after the op. Because I know things can come back quickly, and I think as I'm already 31, nearly 32, it is best to get it done sooner rather than later.

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