Endometrioma and surgery: Hi, I was... - Endometriosis UK

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Endometrioma and surgery

CB1976 profile image
13 Replies

Hi, I was diagnosed with a 5cm complex cyst which Dr said is an Endometrioma. I’m due to have surgery to remove it shortly. I have never been diagnosed with endometriosis - does the existence of an Endometrioma mean that I have endometriosis? I’ve been trying to read up on it and it seems Endometriomas are associated with stage 3 or 4 endometriosis? Am I likely to need further surgery?

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CB1976
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13 Replies
Pinkbear27 profile image
Pinkbear27

I can’t answer your questions but I just wanted you to know I’m going through the same thing. I have Endometriomas on both ovaries measuring around 4cm. I hope you’re coping well, I’m devastated. Do you have many symptoms?

CB1976 profile image
CB1976 in reply to Pinkbear27

Hi, thanks for your reply. I have quite a lot of pain in my stomach, back and leg. I was so bad that I was vomiting and ended up in A&E, which led to an internal ulstrasound and diagnosis. I’m worried about the surgery, but will be glad to get the cyst out. Just trying to work out what it all means and what the next steps are. Working full time too so not sure what impact of surgery will be on that...

Pinkbear27 profile image
Pinkbear27 in reply to CB1976

No problem. Aww bless you. Sounds terrible. I’m sorry to hear that but I’m glad you have a diagnosis. It’s awful when you’re in so much shock then you have to come home and google everything yourself isn’t it. I’m working full time too so I am really worried about how much time I’m going to need off work after the surgery. I got told 1 week by my consultant but after reading threads on here I’m thinking it will take longer than that. I’m looking forward to not being in as much pain anymore as it’s getting worse.

CB1976 profile image
CB1976 in reply to Pinkbear27

Consultant told me it might be up to 4 weeks off work - don’t really know what to expect!

Dinky26 profile image
Dinky26

Hi, I too have a 6cm endometrioma on my left ovary and also a 2cm one inside the same ovary. Can I ask where you feel the pain in your leg? And is it there all the time? I only ask cause leg pain is my main symptom I've had it 5 months now and only recently been put on the surgery list and been told to expect a very long wait due to covid :( thanks

CB1976 profile image
CB1976 in reply to Dinky26

Hi - pain is on the inside of my leg, same side as cyst. I feel it most of the time, but sometimes worse than others. Consultant asked for my surgery to be ‘red flagged’ but not sure why.

Afrohair profile image
Afrohair

If you have an Endometrioma yes you have endometriosis most likely only about 19 patients out of 1785 patients in a study I read didn't have lesions as well .endometriomas are like little blood filled sacks of endometrial tissue .endometriomas can stay the same size for many years or they can grow quite big endometriomas are considered an advanced stage but I would not take note of the staging system and only go by your case in particular to answer your question you must ensure you have a specialist remove it who has a keen eye for endometriosis who will take away any other lesions you may have not to cause more problems x

BrightLights88 profile image
BrightLights88

Hi ladies,

I had 22mm and 14mm endo cyst behind my uterus and one in my ovary. I had my first ever surgery last yr summer with just 5 incisions all healed within 2 weeks which I was surprised by. Just keep at your green tea,peppermint tea and and light walks around the house.

I have suffered with 9 hospital admission for flare-up every month whilst waiting to see if the cyst will disappear but it just got worse over time. 14months later I had the surgery. I used the pill to control the size of the cyst from growing anymore and cocodamol after surgery for those on and off recovery pain. I am now 1 year of being endo free.

I also work full time and run a special needs school I did 3 months of 2 hrs work and then gradually got back into full time. This was due to the fact my incisions healed from the outside but I had to still take it easy as internally it was still trying to heal. My belly button was the only one that took a while to heal.

but overall I took 2 weeks off work. returned with reduced hours. x

CB1976 profile image
CB1976

Thanks for all the comments, I have slightly elevated CA125 so a bit worried...

Susie1234567 profile image
Susie1234567

Hi! I have just came from an ultrasound where it was confirmed that I have an endometrioma. I am worried about the waiting time to see a gynaecologist and have the surgery. How long did this take? Do you have a date for the surgery already? Hope you feel much better soon.

CB1976 profile image
CB1976

Hi, my first internal ultrasound was in June, second in Sept and operation due mid-Nov

butterfliez profile image
butterfliez

Hi I was diagnosed with endometriosis a year ago (last Nov , ) I had a 10cm endometrioma which was discovered during ivf treatment, I never knew I had the condition until the laparoscopy to remove the cyst that is when they discovered endo on both ovaries , i never really had symptoms as such but looking back I now realise I do have symptoms but put it down to usual period pains , My ca125 blood test was very high before diagnosed which I worried about at the time but now they say that’s common with endo. But unfortunately less than 6 weeks after surgery my endometrioma had returned around 5cm this time , all discovered during ivf scans. From the research I have done it’s very common for cysts to return depending on how they remove them , mine burst when they tried to remove it & because they couldn’t risk damage to my ovary they didn’t cut any away.

Hope all goes well for your surgery x

Hi,

Sorry to hear this!

I also have 5cm cyts on both ovaries! Snap! XD

I've been dealing with ever-increasing pain for the last 11 or so years and have only just been diagnosed and listened to.

Wishing you all the best, I'm currently considering surgery to have them removed and waiting to get onto the surgery waitlist -_-

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