I am posting here as I am really confused about the information out there on endometriomas. I had one removed last April and now have a second one on the same ovary that I'm due to get removed on Wednesday. It's around the 5cm mark so not the biggest it could be but I'm making the presumption it's fast growing as, when I did a round of egg freezing over the summer months, no one at the clinic spotted a cyst on my ovary then so it appears to have come about rather quickly. I have been very symptomatic for a couple of months - more discomfort than pain but this has been debilitating enough to stop me from doing my usual dancing and hiking activities. Over the last week I resumed the contraceptive pill and now I am much less symptomatic. My surgeon told me to have the endometrioma removed as apparently as these grow they become trickier to remove by surgery (so less risky to remove a 5cm cyst than a 10cm one - more likely to preserve the ovary itself). However, having read a lot of medical sources online and attended the Endometriosis UK event in London yesterday in which one of the speakers called for a more conservative approach to surgery on endometiomas due to affect it has on ovarian reserve, I am now left very confused. As this would be my second surgery, I'm obviously very worried about the ovarian reserve point. I questioned by consultant about this (as it wasn't mentioned to me either before my last surgery or at my last consultation) and he said that surgery would "not significantly" lower ovarian reserve. It seems to be the case that some experts think the damage exerted by surgery on endometrioma is minimal whereas others think it is more impactful so it's better to leave endometrioma rather than treat them. That leaves me with the question, what happens if you leave them? Since they do not go away but only grow larger (unless they rupture of course which I've been told is excruciating and proposes its own risks) then surely isn't leaving them delaying the inevitable? Sure my symptoms are much reduced now I'm on the pill but if I want to get pregnant presumably they would only come back should I stop the pill. On the subject of whether an endometrioma itself harms the ovarian reserve - there seems to be no conclusive answer...
Any advice would be much appreciated!
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AnnaSW11
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I had an endometrioma rupture in July and it was excruciating! I’ve been waiting for a lap date and to see a different specialist one in Endo and fertility but was told this week they aren’t going to operate due to the potential damage to my ovarian reserve and have advised we go straight to IVF due to my age, the fact we’ve been ttc for 18 months and the extent on my endometriosis - not sure if this is helpful but thought I’d share in case!
Also a recent mri showed the endometrioma has shrunk from 7cms to 3cms but I think it’s ruptured on 2 further occasions as I experienced the same pain. I think this has also caused other problems as I now have another endometrioma on my other ovary.
Really interested to hear what others experiences are on this too as the research I’ve done online is mixed so it’s all quite confusing!
Oh my sounds like you've really been through it with the rupture. I didn't think endometriomas could shrink but I'm guessing in your case that's a result of the rupture. Interesting they don't want to operate but have suggested you go to ivf. I've heard endometriomas can get in the way of egg collection but perhaps that's not correct. As you say - a lot of conflicting information out there and n0t even the experts seem to be on the same page.
Yeah I thought as much too, can’t help but feel the rupture led to the other endometrioma and adhesions which showed up on the mri. The specialist I saw seemed to think they could access my ovaries but I read the same as you that they could make it tricky for egg collection. I have an appointment with the fertility service next week so hoping to find out more then. Good luck with everything
The endometrioma itself does not harm your ovarian reserve. The removal process might but only if they remove it completely which they obviously did not since it came back. They did the same with my 10cm one. Left a bit of the membrane so as not to harm the ovary. I starter off with a 3cm one. Grew to 6.5 cm 1st cycle then to 10cm after the 2nd. Never got eggs from that ovary as nothing else really grew because of the endometrioma. Have now had it removed and I am in Zoladex preparing for next off. The management really depends on weather you are actively trying to ttc or undergoing fertility treatment also. I was always worrying it might rupture and was in so much pain and nausea. Feels good to not have it now. Used to feel it moving when I turned in bed at night.
There is no way to know how fast it will grow.
There is also the risk of ovarian torsion.
You say you had some eggs frozen and are on the pill now. Are you not ttc any time soon then? This should be taken into account when considering how to manage the endometrioma.
Thanks very much for your message. Yes - that's right - I had an ablation on my last cyst as opposed to an excision and the recurrence rates are higher for that type of surgery. I know a lot of people advocate excision as it's less likely to provoke a recurrence (though having read a lot of blog posts there certainly seems to be plenty of people who've had recurring endometriomas after excision too so I guess neither option is perfect) but it looks to me as if excision may result in the removal of healthy ovarian tissue thus lowering ovarian reserve. Over the summer when I froze some eggs I was shown various graphs demonstrating how my ovaries were responding to hormone treatment and performance was better on the ovary that hadn't had the drained cyst on it - but the difference wasn't highly significant. I am not trying to conceive as I don't have a partner. I would have had children years ago before I was even diagnosed with endo had i been in a relationship (assuming I could of course). I have osciliated a lot over this op but as I'm symptomatic and can feel the cyst (assuming what I'm feeling is my cyst- one can never be 100% sure) I've concluded I should probably have it.
As i know the cyst it’s self would not affect ovarian reserve it will affect the eggs and leave it for some time could destroy the eggs i mean the quality not the number
I had very big cyst and i had laproscopy for it
After removed it it returned very quickly
At that time I was really worried that the cyst will prevent me from getting pregnant in the future i was 16 years old and I didn’t know anything about ovarian reserve so i went to the doctor i wanted to treated and i was afraid that he will suggest another laproscopy i shocked when he really was not supporting for another surgery btw he treated me with injections
after searching and focusing more about endometriosis i discovered that laproscopy and surgeries would affect the ovarian reserve so i think he didn’t suggest the laproscopy again for. This reason especially he knew that i am really worried about my fertility
Hi thanks for your comments. So you just left your second cyst in that case? Has it not kept growing or have you managed to keep it at bay with hormone injections? Seems both options affect fertility if what you say is correct - surgery can affect the number of eggs an ovary produces whereas the endometrioma can affect the quality of the eggs that are there. So pretty much a lose lose scenario overall?
It is indeed a lose lose scenario because surgery can also create scar tissue which is not good for you and the more surgeries you have the worse it is. As long as you manage the endo hormonally after your surgery you should be fine. Its good you already have frozen eggs. If you are symptomatic I can understand the pain. I had bad pain even when the cyst was only 3cm and everyone told me it was too small to feel pain. But now that its out I know that's what was causing the pain because I feel so much better. I am on Zoladex also now so that might be helping also. Good luck!
Thanks so much for your message. Yes - plan is to have the op tomorrow and then stay on the pill indefinitely. I know that you're supposed to do a few rounds of egg freezing to get a good number but I can't face doing it again as I've had so many issues since doing the one round that it's put me off doing further ones. So, I'll see how I get on with the pill - seems to work wonders for some but not others.
How did your surgery go? You are in a much better position either way as you have the information in order to make an informed choice.
I have had 2 surgeries on my cyst (the first was an emergency and I lost too much blood to take it all out so they finished excising it on the second) and I was just told this is what we will do with zero information on the risks or pros and cons. Undergoing an operation where you don't really understand what is happening to you is terrifying.
Best of luck and fingers crossed that it gets rid of it for good.
Hello thanks for your message and asking about my surgery. I went in yesterday and the surgery was long (My parents were freaking out as they were waiting for me to come out for hours). It took me ages to come round from the anaesthetic so I had to stay in overnight and I haven't had the chance to speak to my consultant yet (I went private so I need to go back next Wed for my post op). Discharge sheet however showed no ovarian cyst!!! I was shocked. I was in so much discomfort esp on my left hand side and so of course believed what I was told after my scan. Apparently it was adhesions (presumably caused by endo) on my left ovary and I imagine in other parts of my pelvic too as I had quite a range of pain. Anyway I'm in quite a bit of pain now but just trying to take it easy.
That sounds very confusing and disorientating. Ultrasound scans can be hard to interpret I think. I have something on my right ovary again which has been diagnosed as repeat endometrioma, then hydrosalpinx, then post operative scarring! Who knows what it is!
I hope your pain settles, look after yourself and bear in mind that your body needs to heal inside after such a long operation. So be kind and patient with it.
Hello I had my post op appointment which I have to say shed little light on things. My surgeon couldn't really explain why they thought I'd had a cyst when in actual fact I had adhesions (my left ovary was stuck against my pelvic wall and bowel) but he did say adhesions can't be picked up on ultrasound which confuses things further as clearly something must have been seen on the ultrasound so I guess maybe the scarring all showed up as a mass which was mistaken for a cyst. Surprisingly - despite there being a lot of adhesions- no endometriosis was found anywhere. This massively surprised me as on my first lap 19 months ago I was diagnosed as stage 2 and it was found in various places. My surgeon couldn't really explain the adhesions - they might be caused by endo, might not. He also said he thinks my fallopian tubes are blocked as the dye didn't go through them, but offered no advice as to whether anything could be done about that. All in all I wasn't too happy - he didn't give any advice on managing the condition moving forward and even said if I wanted I could 'have everything out'. I saw my gp today and she's agreed to refer me to a bgse registered endo specialist so I intend to do that and get a second opinion and hopefully some guidance.
Getting referred sounds like a good move. If I were you I would request your medical records for both laps and everything around them. You can do this through your hospital PALS and it is free due to the new EU data protection law. I did this and found that they hadn't told me everything. This will also make sure you are fully informed for your appointment with the new specialist.
It also had the unexpected side effect for me that my consultant suddenly decided to see me himself and go through both my operations and my current situation in detail. I'm not sure whether this was because he knew I requested the records or just a coincidence but better late than never.
The current position that I have some sort of fluid balloon near my right ovary or in or on my right tube. Possibly due to adhesions possibly due to post operative scarring. I'm in pain which stabs me in the stomach at least once a day but the options for solving it are limited, more surgery could make it worse. I'll just wait and see I think.
Have you had any infections? They told me that the PID I had due to chocolate cyst fluid/rupture in my pelvis could have caused the adhesions. Something to do with the way that the body heals.
A word of warning though so that you are not disappointed. Endo and gynae problems are massively under-researched so you may never get a definitive answer but they should at least help you manage it so that you have a good quality of life.
Yes, I plan to get referred elsewhere as soon as I'm recovered from surgery. Interesting re your consultant not telling you everything that was in the notes. That's rather worrying. I think getting my notes will definitely be helpful especially if any information has been withheld from me (which frankly will annoy me if that's the case!) I've never heard of a fluid balloon before but I am familiar with the "stabbing pain" you referred to. Basically, before I went in for my op last month I was getting a stabbing pain in my left pelvic area - which I thought was an ovarian cyst since that's what I had been told. Now I know it to be adhesions and I am fearful that once I am recovered from the op (it was 3 weeks ago now so I'm on the way) the same symptoms will still be there as I've been experiencing a similar pain in that area. Could be that my adhesions are reforming already! I definitely need a second opinion though as I'm not getting anywhere with my existing consultant. I'm really worried that these adhesions are going to cause a lot of pain moving forward. I'm not aware of ever having a pelvic infection so my adhesions must be down to endo/my first surgery.
Hi, I know this is an old post but I’m so confused and stressed, I’ve had 2 Endometriomas one on each ovary. One 2cm one just under 3cm I think? They have stayed at the same size for over a year, and have a scan coming up in the next 2 months before I see my fertility doctor fo see if they have grown.
I am so torn on what to do, I don’t know if to have the surgery or not?
I have read online the endometrioma can damage the ovarian reserve, but then seeing a few posts on here people are saying if doesn’t damage the ovarian reserve!
I’ve also read online about early menopause etc and I’m overwhelmed with stress, fear and worry.
We have been trying for a baby for nearly 2 years now but hubby also has sperm issues. Sorry for the paragraph. Xxx
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