Endometrioma experiences: Hi I know from an... - Endometriosis UK

Endometriosis UK

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Endometrioma experiences

JenRow7 profile image

Hi I know from an ultrasound I have an endometrioma on my overy. Have been experiencing pain and pressure since august. Uti like symptoms. Now got my period early bleeding clots.

Can't go to sleep as worried its leaking or could burst. Is that really irrational?

15 Replies

I had an endometrioma - took almost 2 years before it was removed due to wait lists, and in that time grew from 3cms to 10cms. My surgeon said that they don't burst, which isn't strictly true. However, you will know if it does - the pain will be extreme and you will need to go straight to A&E. That said, our bodies are pretty stretchy - we fit babies in our bellies, and things don't break, so you'll most likely be fine. Just keep the pressure on them to stick to the NICE guidelines and remove it if it gets too big.

I've had several over the years, they can cause pain at times and can grow to varying levels. Ib had 2 removed at 6cm and 7cm but the most recent was 13cm last week. It did rupture last year putting me in hospital but the pain was excruciating like nothing I've ever had before so I knew straight away. Can't mistake that for usual endo pains. Hope your sorted soon

Do you know which ovary it is on and how big?

Thanks everyone that's really helpful. I was just in a state about it and couldn't sleep with worry! Not sure how big at all. Is on my left overy which is the one my pregnancies and baby came from. So I'm nervous. I've chased up the hospital and am going to book a private appointment. Been through a lot in past few years so I just need to know what the situation is!

Moonglo profile image
Moonglo in reply to JenRow7

Yes, it’s best to know the size.

I had two endometriomas that burst at different times (the first one I was unaware of, the second was 6cm) and both times were the most painful experiences I’ve ever had, where I fainted and was hospitalised for emergency laps.

Soon after the second lap, they found another endometrioma, but this one has stayed small, at approx 2.5cm and it hasn’t bothered me. They probably won’t want to remove anything smaller than 3cm, but you need to monitor how quickly it grows, as that would probably give you an insight into whether it’s likely to burst.

I don’t want to scare you, I think it’s good to make an informed decision with these things. Best of luck!

JenRow7 profile image
JenRow7 in reply to Moonglo

Yes I should be able to have the mri quite quick after I see the consultant. I'm on mat leave so will try and get a cancellation. No it doesn't scare me....I can't imagine mines that bad as hopefully only grown since I had my baby. Just feel exhausted with the constant niggling pain

Moonglo profile image
Moonglo in reply to JenRow7

Yes, pain is exhausting. And you’ve got a baby, so my sympathies to you!

So if you’ve already had a scan that found the endometrioma, it’ll be useful to have the size from then, to compare it to the size from your new scan. And then monitor it, probably every six months, depending on how quickly it’s grown.

JenRow7 profile image
JenRow7 in reply to Moonglo

Yes I see that's a good point. The last one was august. So if next one is jan/ feb that will be a good measure. I feel a lot calmer now

Moonglo profile image
Moonglo in reply to JenRow7

Cool. Only don’t expect your doctors to talk to each other. Find out for yourself (if your GP referred you to that scan in August, email them and ask) and take a printout of their response to your consultant.

Can I ask where you most prominent pain is with the cyst please?

JenRow7 profile image
JenRow7 in reply to AprilMac

Left lower back

I have the exact same as you on my left ovary an endometrioma which they are removing next month. I also have lower back and side pain on that side!! I have gone private and it has been so quick. Hope everything gets sorted for you. I find taking buscopan really helps with the pain, it might be worth a try!

JenRow7 profile image
JenRow7 in reply to Shoesy

Oh really. How big is yours and how long have you had it? Ok I'll try that thanks. Yes I'm thinking of going private now....if my dad helps me pay! My last op on nhs went through really fast but with covid I just cant cope with not knowing the timescale! Will your overy be ok after? Or does it not matter if you still have one.

Does it feel like a squeezing pain?

Good luck with your treatment. Hope it goes well

Shoesy profile image
Shoesy in reply to JenRow7

Mine is 5cm. They found it in Dec 2019 from an mri due to hip pain. Some private health care places if the consultant does nhs they sometimes allow it on nhs after the private consultation. I am with the bmi and have to say they are excellent. I am lucky I have private health care. I agree with you totally. I was on the nhs waiting list and they have said I'm looking at another 6 months. Yeah they said once the endometrioma is taken away and the other cyst drained it should be OK.

Yeah it does. It almost feels like a toothache constant pain In that side and back!

Thank you so much. I hope everything goes well with you too. Keep nagging at them, as I think its still so poorly understood by the GP's

Rae2020 profile image
Rae2020 in reply to Shoesy

How much is it to have cysts removed privately?

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