endometriosis: hi everyone , I was... - Endometriosis UK

Endometriosis UK

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micky12 profile image
13 Replies

hi everyone ,

I was diagnosed 1 week ago with a large endometriosis 7cmx5 cm on my right ovary . I never heard about this before , and never had any of the symptoms that a patient with endometriosis can have .

of course my doctor said to have operation as is big and I do have some pain , but not everyday .

would like to ask you for a help and advise , may be someone had something like this . and if the contraceptions/ coil helped to decrease the volume or pain , or at this point its better to have surgery ?

I would really appreciate your answer

big hug to everyone and don't forget-- you are not alone !!!xxxxxx

13 Replies
Endosufferer1 profile image

Yes, that's right. Usually, these are the symptoms of endometriosis but may vary from a person to another. How old are you? Usually, it may mean severe endometriosis (can grow on the lungs, thorax, diaphragm, intestins, appendix, pelvic organs, ureter). Make sure to check for the rest of your body and to have a SPECIALIST for endo for the surgery. What are your symptoms?

micky12 profile image
micky12 in reply to Endosufferer1

thank you for your reply , I am 33years old . for now that just saw one . will have Thursday a specialist and another exam to see if there are more of them . I had pain for 4 days and now is 3 days is very little cramps .

Endosufferer1 profile image
Endosufferer1 in reply to micky12

For some people, I'd say they're lucky, they don't feel much pain but that doesn't mean they won't have crazy surgery to one point of their lives because of endo (you can easily see different stories on YouTube). Let me know about the outcome! I'm here for you!💓

Hooplove00 profile image

my mind is 🤯

I had a lap 3 weeks ago. Was seen in the ED last week and I have one the size of a golf ball.

But I just had surgery. These go away on their own right? I’m in so much pain.

ccfd9 profile image
ccfd9 in reply to Hooplove00

There is research that shows that NAC can shrink the size of cysts and ease the pain of endometriosis. Because it is a nutritional supplement and not a drug doctors don’t know about it. As your cyst is only small nutrition will help reduce it. You could see a good nutritional therapist like Dian Shepperson Mills to help with this. May also be worth trying a wheat free gluten free diet for a month, but be aware that gluten can be in alsorts of unsuspecting places, even in your pain killers.

Ellie1988 profile image

its likely they are talking about a cyst, endometriosis isnt diagnosed by size and sat on ovaries- its the endometrium growing outside the uterus into other abdominal cavaties. I would check the diagnosis, if it’s endometriosis they would suggest hormonal oral pill to help slow progression. Cysts can be painful as a stand alone and some will disappear on theyre own, some will need surgery. Double check your diagnosis

My_adventures profile image

Hey I had loads of symptoms when I was younger up until about late 30s then still had symptoms but not as bad.

I then found a big lump in my tummy it was two chocolate cysts formed because of endometriosis. I ended up needing an hysterectomy and oophorectomy last year and they removed a 24 cm mass which was big cysts on both of my ovaries but had joined to create kissing ovaries.

I didn't have the immense pain you'd expect with that kind of thing. I had deep infiltrating endo, in my bowel, wrapped around my kidneys etc

When people say specialist they mean a BSGE registered gynaecologist - and push for this. I had many horror stories etc with gynecologists not knowing 100% what they were looking for.

You don't want that to burst, I was hospitalised when mine was burst and there is a risk of infection if they do. You'll know if it bursts the pain had me on my knees.

Get it checked out again, and take the advice of your medical experts. My understanding chocolate cysts don't go on their own - but I could be wrong.

Sending you lots of love, I know it's a mindfield of information. But we all present so differently!

Take care


Starry1977 profile image

hi I had a 4 cm endometrioma on my left cyst, like you I didn’t have a massive amount of symptoms or pain however it was getting uncomfortable also heavy periods, and pain going toilet and pain down left leg and groin. My ultrasound showed nothing else. My gynea said over 4cm should be removed so I was booked in for surgery. Unfortunately this is when I was diagnosed with stage 4 endo with severe disease. I had a follow mri which showed a lot more and adhesions. I wish I’d have had an mri to check before surgery as although my gynea removed quite a lot there’s still endo left as there wasn’t a multi disciplinary team in the op. I’m now treating with the mini pill.

Moonglo profile image

Hello! Just to clarify that the condition is called endometriosis.

What you’re describing is one of the symptoms, called an endometrioma, or a chocolate cyst (so called because it’s full of blood). Endometriomas won’t go away on their own.

Doctors recommend removal by surgery. Like someone else has said, if they burst it’s extremely painful (it happened to me twice and both times I was rushed to hospital for an emergency laparoscopy).

Not to worry you, just make sure you are looked after by a BSGE specialist and keep an eye on its rate of growth.

Teal09 profile image
Teal09 in reply to Moonglo

Sorry to jump in - just wondering, if you have a confirmed endometrioma does it mean you should by rights be treated by a BSGE specialist?

Moonglo profile image
Moonglo in reply to Teal09

Yes, I believe so as it’s a sign of at least stage 3 endo.

Kazob21 profile image

Hello👋 Hope you are as well as you can be.

I was in a similar position to you. I had an ultrasound just as a precaution for low iron and 2 endometriomas, 9cm and 5cm, were found, one on each ovary and "kissing ovaries" were diagnosed. I then had MRI to confirm. As I wasn't experiencing any pain outside my usual (mostly manageable) period pain, I was shocked to learn this.

I was referred to a specialist clinic but waited almost a year for my appointment and now waiting for surgery to remove the endometriomas.

In the time since the cysts were found, things have changed alot in terms of symptoms. I have started to get pain more frequently, not just with period and my cycles have become irregular in length, sometimes just 21 days.

I have ended up in a&e a few times with severe pain and needed to check if any twisting of the cysts or ovaries had occurred. Thankfully, it hadn't but I was told this could happen at their size.

I'm 36 and have not had children yet. I don't even know how I would look after a child when the pain is so bad I can't stand up.

I was told after surgery I would need to look at Progesterone only pill to "suppress" symptoms. Currently not on any hormonal treatment so something I will have to consider.

Lucinka17 profile image
Lucinka17 in reply to Kazob21


After reading your story it’s very very similar to mine!I am 40 I never knew or had any symptoms before except sometimes painful periods but I thought it’s normal🤷🏼‍♀️ but since February I was in horrible pain which came on sudden! Few trips to A&E but they didn’t do nothing and I mean nothing! I was on sofa 24/7 in pain which I never experience before.

I manage to get GP appointment and my doctor was brilliant since then I had scans done saw specialist and now waiting for my operation which is in July🤦‍♀️while I am waiting they put me on mefenamic acid, progesterone pill ( cerazette) and of course another pain relief I must say the pills definitely helping me I am not in so much pain anymore every day! But I think everybody will agree with me you have good days and you have bad days🤷🏼‍♀️like for me today is absolutely awful and I don’t know why!!! The pain is awful

I forgot to say I was diagnosed with kissing ovaries which got endometrioma( cysts full of blood)and they are 8 cm🤦‍♀️

If I was you I wouldn’t wait till surgery to go on the pill🤷🏼‍♀️I would take it already it should help you.

I love reading everybody stories makes me feel I am not alone and give me lots of tips what to do like I said I am totally new to all this😩

All the best


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