Endometriomas (blood-filled cysts in ovaries)

[regina79]

Hello there,

I have 2 endometrioma (cysts in both ovaries) and I've seen an NHS consultant about it yesterday. The larger cyst is of 4 ish cm and is causing me pains particularly when having sex or doing physical examinations and scans. I've been told that these cysts are not dangerous and I should give it a year before the next scan and consultation. However, I'm a bit doubious as I read a lot online and if endometrioma grow larger can cause a host of problems..

Does anyone have endometrioma cysts and how did they deal with those/what they suggest me to do? Should I see someone privately and ask for a second opinion? I'm just a bit worried that if it gets much bigger in a year time it would damage my ovary.

Thanks all in advance for any suggestions and support,

much love

[EmsO]

Hello, I have endometrioma cysts. The first one was found when I had my scan and it was about the same size as yours. I had another scan 6 weeks later and then during an MRI whilst investigating my gastro symptoms they have another cyst about 1cm. The intravaginal scan couldn’t detect it. Will be having surgery to diagnose endo, divisionlysis (organs adhered to each other so will be speared) and to drain the cysts. I asked my gynaecologist that I wanted them removed and she said it was dependent on where it was but she warned me that they can come back even though they have been removed or drained. They can grow larger but they rarely resolve on their own. If they do grow larger they can cause problems and they can rupture.

Definitely get a second opinion. I have noticed that sometimes the treatment options we are given is dependent on the dr.

All the best

[regina79 in reply to EmsO]

Thanks so much for your helpful reply EmsO. I really appreciate it.

Yes, I think you are definitely right and I should definitely seek a second opinion as soon as possible. Every comment regarding endometrioma I read so far seem to suggest that they can grow large pretty fast. I'm a little concerned for the NHS consultant not having suggested to run a proper test for the diagnosis either.

My other cyst is small and is of 2.5 cm. But I'm a bit worried about the 4.5 cm one as I'm now aware it could get bigger in no time.. So I think a year is way too long to wait to check it again.

Best of luck with your surgery - I hope all goes very well and that they won't come back too quickly..

[Hidden in reply to regina79]

I’ve had endometriomas of 6cm/5cm and had these removed by excision. I think if yours is causing you discomfort then it should ideally be removed in a laparoscopy, have you had a lap before? X

[regina79 in reply to Hidden]

Hi Janine33,

thanks for your message.

No I haven't had a laparoscopy before as they only just found my endometrioma, so all I had is a transvaginal scan and the gynechologist consultant did a smear (I think?!) and a physical examination when I went to see them. But yeah, I might need to get a second opinion privately.. Thanks so much x

[Geordie-Girl78]

Hi there yes I had 2 endometriomas and they have both been removed by excision my biggest one on my left ovary was about 7cm and the other on my right slightly smaller. Have you been diagnosed with endometriosis? I personally would ask for a 2nd opinion as I think a year is a long time to wait!! Hope you get sorted.

[regina79 in reply to Geordie-Girl78]

Hi Geordie-Girl78,

I see. How much smaller than the 7cm one was the other cyst you had? How long did it take you to recover after a laparoscopy? Is there a high risk to damage the ovaries during this procedure?

I don't know if I have endometriosis anywhere else as I haven't had a laparoscopy to diagnose this (I hear this is the best and probably only way to diagnose endo); but they said that my ovarian cysts are endometriomas.

Thanks for your advice - I'll definitely go for a second opinion x

[Geordie-Girl78 in reply to regina79]

Hi - I think the one on my right ovary was around 3cm. I have severe endometriosis and my last surgery was a 3 hour op! My recovery was approx 6-8 weeks but I am still suffering from nerve pain apparently this is very common and can take another 2 months to go completely. My ovaries and tubes were not damaged which I'm really pleased about. Are you in pain?

Endometriosis is all new to me but a laparoscopy is the only way to diagnose endo. If I can help with anything else just let me know. I really hope you don't have to wait to long for a 2nd opinion x

[regina79 in reply to Geordie-Girl78]

Hi Geordie-Girl,

I feel for you.. undergoing such long operations. So sorry to hear. Can you still go to work after this operation and while recovering..?

That's great about no damage to the ovaries! I hope it will be the same for me whenever I'll need to be operated.

I'm in pain inside... my vagina, quite a lot lately. Specially after I had all those examinations (transvaginal scans, physical (with hands...) and smear test :(( ) :(; I think they made my pains so much worse. I also noticed that if my bladder gets full it pushes on my cysts and I feel pain so I have to go and empty it quickly. I never had this problem with my bladder.

I feel a bit depressed but then I know other women have it worse.. plus I don't even know if I do have endometriosis. All I know is that I have 2 cysts and pain internally now.

THANKS SO MUCH for your support I really appreciate it. I do feel down I have to admit. It might be psychological too but I suppose is not a nice feeling when you have pain on ovaries and inside your vagina.. not pleasant. And you would never think you'll get these pains.

I have a doctor app. before Xmas so will ask them for a referral to a Private gynecologist I found in a private hospital near me. I hope he's good.

xxx

[Tjb45]

These sound like chocolate cysts. My consultant told me anything under 5cm they monitor and don’t normally operate.

Mine were 10cm 1 side & 8cm the other

Sometimes some cysts can shrink on their own. Have regular scans, keep a diary of the pain & your cycle. You could be lucky and they may shrink. Any changes in your body tell your GP, have a look on YouTube there’s lots of informative stuff on their good luck

[regina79 in reply to Tjb45]

I see. Thanks a lot Tjb45.

Thanks for sharing your experience with me and for your advice. I really appreciate it!

I hope they will shrink!! That will be amazing...

xx

[Margaritamagali]

I was in heaps of pain and wound up having an emergency lap and the cyst on my left side was 8cm (size of a grapefruit) and the right one was 1.5cm now the left one is back and right one has grown in size. They’re very uncomfortable when you do any sort of sitting or rotation/twisting from the torso. Good luck and hope that you get it sorted. I’m thinking excision or surgery to remove everything might be my ticket to freedom for a while. I recently got prescribed a breast cancer drug and progesterone cream... not sure how I feel about memory loss, bone thinning and hailing thinning...

[regina79 in reply to Margaritamagali]

Hi Margaritamagali,

yes, I agree. They are very uncomfortable. I cannot imagine having them bigger as yours. Did you have them both removed now?

Sorry to hear about your medication.. I hope it's not too bad. Wishing you best of luck with the side-effects but I really hope they help you with the symptoms xx