Endometrioma or Ovarian Cancer?

[Givemestrenght13]

I'm one of the many that must post here describing themselves as worried sick, full of tears and looking for some sort of reassurance and I thank your kindness in advance!
I am 52 and to my knowledge never had Edometritis and always had regular periods that stopped around 2 years ago. I'm tall and have always been of a very slim (borderline skinny) build
I have had IBS all my life and did the low fodmap diet with registered dietician in February and lost nearly a stone. In the meantime I have had the odd stabbing pain and dull ache to the right of my belly button and just below. I finished the fodmap diet at the end of April and had more settled IBS, but I had lost weight (although I don't eat a lot of high fat foods and have never had large appitiete) Having the right side pain I went to the GP and my husband was also concerned about my weight loss. I have since increased my calories but progress is slow with putting any weight back on. (2lb!) I am also a TERRIBLE worrier and have awful anxiety which I'm contributes I'm sure to my weight loss.
So, today I had an internal ultrasound and by coincidence a blood test for my ovaries and whist I was in the surgery the GP happended to call as she had my scan results back from 8:30 this morning!!! (I know, how great is that!) I don't remember all the terminology but they want to refer me for a scan in the next 14 days (the speed of which scared me too) I have a 1.5cm cyst that (from what I remember) doesn't look like a normal fluid filled cyst and could be endometrioma or something else.
The GP was very good and took time try to reasure me, but a lot of the conversation and advice has gone from my mind.
I am now away on holiday next Monday for 9 days which we have waited for since before Covid and quite frankly my head is in a dizzy spin and my husband is suggesting we cancel the holiday.
Having looked on the NHS website/symptoms...Other than the odd sensation of discomfort on my right hand side, I don't have a swollen tummy (I do get the odd bloatedness if I eat something I know I will react to) I have a relatively good appitiete and get hungry often, I sometimes pee more than usual and sometimes twice a night but could go most of the day without a wee, no indigestion, consitpation or diarrhoea, I don't feel tired all the time, I'm not bleeding. I do have a bad back but I did last September when I pulled my back after a very long bike ride and literally couldn't move.
Any reasurance or messages very welcome.

I hope everything is OK. I had a 7cm 'complex cyst' that turned out to be an endometrioma. I was in

I think you should go on holiday if possible- staying at home won't help and you might relax more with a change of scene.

Sorry, accidentally deleted part of that - meant to say I was in pain with mine and had raised CA125.

I have ovarian cancer. My CA125 was raised, I was bloated for a few weeks and that was about it. However, during my ultrasound where the 2 masses were found no one ever gave me hope they’d be endometriomas or anything less sinister. Who performed your scan? Mine was done in gynae and they were quite realistic about it looking bad straight away.

In your shoes I’d go on holiday. If you find out who you’ve been referred to (I was referred to both x-ray and gynae under the 2ww and chose to chase gynae) they can book you an appointment for when you’re back. It’s way more likely to be something benign!

Thank you both for replying.

Antarcticant thank you. You have made me feel hopeful… and for now, and after a wine or 3, I am clinging onto the fact that nothing has really changed since yesterday. Just uncertainty.

AGreatUsername thank you too and I’m so sorry that you were diagnosed and I really appreciate you replying. I had a scan at my local hospital today. Not a gynae unit but still very good I imagine. Especially giving the results to gp the same morning. My GP said to go away and she would refer me in a few days as I need to be available or they would just reject the appointment which makes sense. May I ask if you had any other symptoms? Having had ibs I have spent nearly all my life feeling bloated. So it was only the pain and weight loss that drove me to visit my GP. I’m in Oxford and we have a good gynae hospital here.

xxx

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@Givemestrenght13 my real main symptom was bloating. But it didn’t feel like gassy bloating, I didn’t have any gas! Mine came on quite suddenly after what I thought was a tummy bug. A few weeks of poorly tummy with diarrhoea and I was just left with this bloat. I didn’t realise tummy changes were a symptom at the time.

Looking back I had been getting up most nights for a wee for about a year, but I had assumed that being mid thirties now it was just an age thing. After the bug my lower left quadrant was tender to palpate but not painful otherwise. I had 2 masses, about 9cm each and honestly wouldn’t have known!

It’s great you’re being checked out, the wait and worry is the worst, sending you strength.

I can offer a tiny bit of reassurance in that you can have an endometrioma without any other symptoms of endometriosis. I've always had light, pain-free periods, nothing to suggest endometriosis at all, but I have an endometrioma (approx 2 cm, managed by the pill). It's a dull ache, occasional referred pain down the front of my thigh.

I've had ovarian cancer. It was clearly obvious on the first scan, there was no "what if" about it. Doc just looked at it and said " well , you are looking at an adenocarcinoma ".

If you are showing a small cyst it's unlikely that it would be cancer. My Ca 125 was in the hundreds of thousands too . I knew from Day 1 , what I was dealing with. I do hope you are fine - from what you've said it doesn't sound sinister at all.

Thank you everyone. I have called the Reception at the GP this morning with concern over the speediness of the results and they were great in reassuring me. Apparently it's not unusual to get results so quick as the clinic I went to are very good and speedy. Viva la NHS!

@AGreatUsername thank you. I'm not oblivious to the fact I don't actually have any diagnosis of any sort and you do. I'm very grateful for the information you have shared with me.

@Tollystar you have just described my circumstances exactly and it has made me feel better, I keep going to panic mode for a few seconds at a time, I think because I have navigated life without any real medical concerns, how lucky am I. So I will focus on your words next time I swing into panic mode. The dull ache is also identical with the odd rare sharper pain. So did they end up putting you on the pill as a solution?

@starrynight21 again I'm so very grateful to you, as I said to @AGreatUsername I really appreciate your reply knowing you have been diagnosed. May I ask what scan showed your results so clearly (if you don't mind sharing) I had an transvaginal ultrasound yesterday

I've not cancelled my holiday, ultimately not a lot will change in 10 days with or without a '2 week wait urgent appointment' and I'm sure wine and sun will help.😉

Please try not to worry. I suspect this is a case of miscommunication/misunderstanding. When a cyst was seen on my ovary at a private scan, I was given a scan very quickly to confirm type in the NHS. I was told it was an endometrioma and despite it being quite large (over 7cm), the chance of it being or becoming cancerous was very low. That has occasionally played on my mind but I know it's a miniscule risk.
I had had no signs of endometriosis.

So did they end up putting you on the pill as a solution?

Yes, the pill regulates the hormones keeping the the endo material within the cyst from flaring up and making the cyst bigger/painful. Mine 'shrunk' from 3 cm to 2 cm after 6 months on the pill, and has now been that size for 2 years. Clinical trials show certain pills (namely Eloine) are better at 'shrinking' endometriomas.

BTW, I'm currently on a 2 week wait for a breast lump referral. I'm trying (mostly successfully) to not worry about it before there is actually something to worry about - knowing that if it turns out there is something wrong, I'll have plenty of time to worry/research the hell out of it once I get the diagnosis, and there is no need to waste this never-to-be-lived-again precious week worrying too. I find that strangely comforting! Enjoy that holiday!!!

I have recently been diagnosed with endometriosis, with an endometrioma on my ovary and one on my bowel. I didn't go in with symptoms that pointed to endometriosis and the consultant said that the extent of endometriosis and the severity of symptoms often don't correlate. I'm now on the pill to see if that stops them from growing.

My mum is currently having treatment for OC. Her presenting symptoms were just a gripey pain (she also has IBS, but this pain felt different) and symptoms of an overactive bladder. She had slightly raised CA125
Hers was suggested to be OC very early on, there was never a hint of another diagnosis

Even if it turns out to be OC, there are so many treatments now and the published survival stats are therefore way out of date ❤️

I had a ovarian cyst that was picked up on a 20 week pregnancy ultra sound. It was suspected to be an endometrioma but turned out to be a dermoid cyst and non harmful. Was removed during c section.
Apparently the two can look similar on a scan with a ' broken glass ' appearance - sort of white and grey in the centre

Thank you for all your advice and words of wisdom. We fly tomorrow and I’ve taken comfort from you guys.
For now I will try to live by @Tollystar words “why waste this never-to-be-lived-again precious week worrying”
I will let you know how I get on with the 2ww referral when I’m back.
xxx

I hope you have lovely, relaxing break.

I have reoccurring cysts and are neither cancer nor endometriona, but would say your appointment for another scan is standard, though quick! It'll be to see if it's grown - the faster growing it is the more likely they'll need to intervene.

I tested positive on the CA125 test 3 times but didn't have ovarian cancer. I had a huge cyst on one ovary and severe endometriosis throughout my pelvis. I didn't have any symptoms at all. I hope it's similar for you, OP.

An update for those kind people who took time to reply and future mumsnetters panicking and googling this stuff … just like me!
CA125 came back as normal. 👏👏👏 My scan was triaged by a gynae consultant and based on my normal bloods I have been referred to the gynae unit as a 4-6 week wait. Appointment on 23rd Sept (My birthday….happy birthday to me 😂)
Extremely grateful to you all.
Love and positive thoughts to anyone who may need it.
xxx

Great to hear this, OP. Thank you for updating.