Large endometrioma removal success? - Endometriosis UK

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Large endometrioma removal success?

Linds123 profile image
14 Replies

Hi I'm 32 and have endometriomas in both my ovaries. I have already been told that my left ovary needs to be removed as it is attached to my bowel however in January my right one was completely fine but had a cyst in it that was drained. Since then I have found out that I have a cyst of 9cm in my right one and they can no longer see the ovary as it is so big -this wasn't there in March. It is also now attached to my left ovary, my uterus and bowel and has rotated the whole womb. I am having an op to removed the cysts and see how badly attached so that they can determine what happens next. I just want to find out if anyone has had a cyst of this size removed without the need to remove the ovary. (I suspect I will need a complete hysterectomy but just wanting to see if anyone else has had this done successfully).

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Linds123
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ap2014 profile image
ap2014

In 2003 I had three cysts - I think they were 8cm, 6cm and 4cm - removed from my left ovary successfully. I had that ovary removed in April as it had another large cyst. Haven't seen my doctor yet to find out why exactly it was removed but I was expecting it going in.

Linds123 profile image
Linds123 in reply to ap2014

Thank you for responding, i have no idea what will happen to me but it is good to know that the size may not be a problem.

I've had 3 cysts removed in 3 years; One was 15cm. I still have both my ovaries although one was quite damaged and might not be working. My Endometrioma was also attached to uterus, ovary and bowel but they cut it away. As I haven't had children but would like them the surgeons did their best to leave everything intact. It worked for me so fingers crossed it works for you too :-)

Linds123 profile image
Linds123 in reply to

Thank you, I found out a week ago that my left ovary is attached to (what feels like) everything else and it has changed the plan somewhat. I have a child already and not planning anymore but I don't want to lose the option as I'm only 32. This gives me some hope! I am heading into this with the expectation that I will need a hysterectomy - the same happened to my mum at 36 - so anything less than that will be a bonus I think!

Jdgirl030 profile image
Jdgirl030

Success is very dependent on the skill of the surgeon. A very good surgeon with a proven record will have no problems.

I also worry that you have been told that your ovary will need to be removed due to fusion to your bowel. Again, if you are in the right hands then a health ovary should not require removal if you select a surgeon who is an expert in adhesiolysis.

Linds123 profile image
Linds123 in reply to Jdgirl030

Thank you for your comment, I have seen three different ones so far and the original one told me the ovary and tube were a complete mess. I am stuck with the specialist I have as I can only have treatment in the hospital I have been referred to (I'm not from the uk but am having treatment in the NHS) but have heard he is very good and will wait to see what he says about it all when he has seen it for himself. Given how it has attached itself to other parts in the last 4 months I'm not sure I want it in there anyway!

Jdgirl030 profile image
Jdgirl030

There are a few experts in the uk that conduct ovarian suspension which once the ovary is parted from your organ helps to prevent it sticking again. Might be worth looking in to? You can read about it on the link below. I had it done 3 weeks ago and hope it helps!

consultant-gynaecologist.co .uk

Jdgirl030 profile image
Jdgirl030

Sorry wrote link incorrectly !

consultant-gynaecologist.co...

Hi,

Our situation is very similar as I had a CT/MRI scan and was told I had 2 x endometriomas, the one on the right was only 3cm so could be removed but my left one was 8.5cm and engulfing the ovary so I was told I would need to loss the left ovary & tube. I wasn't happy with the news as I was planning on trying for another baby but I knew I still had a chance with one ovary so agreed to the surgery.

I had my laparoscopy last week and woke up to be told like you my ovaries were stuck to the uterus and bowel so all they could do was drain the cysts so now the recommended option is for me to have a subtotal hysterectomy :(.

So naturally I am devastated but i have been told there is just no safe way to release the ovaries & tubes without damaging them or my bowel so now I have to go back in 4wks to discuss what happens next.

This was my 3rd lap surgery so adhesions from past surgery does play a big part in it so hopefully you'll have better news x

Linds123 profile image
Linds123 in reply to

Thanks for the reply, my concern is that I had already been told by my gynae here who drained the cysts in January that the left one would need to go but it is my right one, that was previously clear, that has the 9cm cyst. I am with a gynae specialising in endo now and he is doing a lap next month to see what is actually going on and then make a call on what happens next.

I am so sorry to hear what's happened with you and I really feel for you with wanting to have more children and hearing this news. For me, so long as I am not making a decision to have a hysterectomy but instead it is something that has to happen then i won't have any regrets hanging over me if I change my mind on children later on. My daughter is 12 and going back through baby stuff now just makes me feel tired at the thought!

Good luck with everything x

Jdgirl030 profile image
Jdgirl030

Hi Tracy, are you happy that you are with a good enough surgeon? I was told this too but I decided to get a second opinion from one of the best consultants in the country who has successfully operated on stage 4 by laparoscopy since the early nineties. He has an excellent record of preserving ovaries no matter how extensive your adhesions are.

I would just make sure you are under the right centre and surgeon to deal with this. A general gynae even with an interest in endo will not be as competent as a specialist who pioneers surgical techniques in endo.

You might find this nhs document useful which basically echoes what I am trying to say : england.nhs.uk/wp-content/u...

Can I also just recommend that you research the benefits of hysterectomy with advanced endo. Removal of the uterus only helps with adenomyosis. Removal of the ovaries has little benefit because if you are at a younger age you have to go on hormone replacement anyway which continues to fuel endo. Radical excision to excise wide parts of the pelvic lining and disease from your organs is the best chance of restoring your fertility and reducing pain. Many women still struggle with endo post hysterectomy and this forum portrays evidence of this. Some surgeons who don't have the skills to perform radical excision by keyhole (which requires so much skill) suggest hysterectomy as an easy option and yes if you have adenomyosis it would help. Not all women have this condition though.

As you would like further children I would suggest you get an AMH test to check your ovarian reserve. Having cysts cut away will reduce your reserve so if it is low already draining them and then having the rest of your endo excised would be your best bet . If you have low reserve (which can be the case as cysts destroy egg quality) you would be best to go straight to IVF after you have as much endo cleared as possible.

I see so many women on here who are told their surgeon can't save their ovaries or they need a hysterectomy. I was in this position once upon a time but I am a proven case that if you go to an expert this doesn't have to be the case. Look for a BGSE centre. I ended up going private to see the very best and I took out a loan but it was the best decision I could have made for myself and hopefully my future family. I am now waiting to proceed to IVF and I feel fantastic despite having all the issues you ladies are talking about x

k21234 profile image
k21234 in reply to Jdgirl030

Hi, can you tell me the consultant that you saw?

Linds123 profile image
Linds123 in reply to k21234

Hi. My consultant was Adam moors at Southampton hospital

Lisamarie7 profile image
Lisamarie7

Hi I had a 9cm dermoid removed from one ovary and 9cm normal fluid cyst removed from the other I did lose half of one ovary and a quarter if the other this wAs three years ago now I'm 35 I just had lap last thurs to remove 3cm dermoid from ovary and they found extensive endo fusing my bowel to uterus so waiting to have follow up and further op but it is possible to preserve the ovarys if they are not badly damaged x

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