MRI shows large ovaries cysts: Hi, I could... - Endometriosis UK

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MRI shows large ovaries cysts

Alice1971 profile image
25 Replies

Hi, I could really do with some reassuring. My consultant sent me for a pelvis scan a couple of weeks ago. My health is poor I suffer from fibromyalgia, phsoritic arthritus, spondylitis of the spine & under active thyroid. I can barely walk due to pain in my spine, he wanted to check the severity of my arthritis so that was the reason for the scan. He ran me last week with the results, this alarmed me as you Rarely get a phone call off them. He said there are cysts on each of my ovaries one 15cm and other 10cm, he also said the discs in my lower spine were not good, however the report of the results say my ovaries have to be seen first, so he has referred me for an emergency appointment with gyne. I have read that cysts are very common, but I am so worried. Has anyone experienced this problem and what treatment was required.

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Alice1971 profile image
Alice1971
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25 Replies
Aurorasparkle profile image
Aurorasparkle

Hi I'm really sorry that you have had this news must be quite a shock for you!

Your back pain could be caused by your cysts as well as your athritis as they are very big. Have they told you what kind of cyst they are? I had a 13 cm endometomia a couple of yrs ago.

Please make sure you have a good gynae and that they remove both cysts and don't just drain them.

Xxxx

Alice1971 profile image
Alice1971 in reply to Aurorasparkle

I'm waiting for my appointment to arrive, I have no idea what sort of cysts I have. I have injections every Friday for my arthritis, when I was there last Friday I explained to the nurse my worries as I had only had the phone call off my consultant a few days earlier when he rang I was shocked so really didn't take in in, so my nurse looked at my records she found the letter sent to my consultant for the results of MRI scan, it said I had the cysts on each ovaries and the sizes, she told me not to worry, and that an appointment will arrive soon. Im still waiting for my appointment and still worried. Did you have your cysts removed? Thank you so much for replying and your advice x

Aurorasparkle profile image
Aurorasparkle in reply to Alice1971

Hi yes I had my endometromia removed but unfortunately it was an emergency op and they didn't remove it properly and unforunately my endo spread and the cyst refilled and I had amother op to remove the cyst completely and to excise all. My endo at a specilaist centre. try and find out what kind they are and find out what kind of cysts they are. Xxx

Alice1971 profile image
Alice1971 in reply to Aurorasparkle

Oh dear that's terrible, hope your okay now, I will let you know when I know more ☺️ Xx

Brownlow profile image
Brownlow

Hi Alice,

All of the conditions you list are autoimmune conditions. aarda.org/autoimmune-inform...

I have been reading up on autoimmunity and how to treat it with diet instead of drugs but I am no expert. Try researching

- Amy Myers amymyersmd.com/myblog/

- Dr. Axe draxe.com/4-steps-to-heal-l...

- Frank Lipman drfranklipman.com/wp-conten...

and many others.

Modern medicine is not very good at treating the 'whole' person and you could potentially end up seeing different doctors each specialising in their little bit prescribing something for a symptom but not getting to the root of the problem. Still useful for diagnosis etc. but I think you need to take a more strategic approach and address the underlying cause.

There are different types of ovarian cysts and they can sometimes be quite large. They can be removed by surgery fairly easily but they need to be cut out and not drained to reduce the chance of recurrence. It is a scary thing to find out especially as you have a lot of other health issues to deal with. Many women on this forum including me have cysts on our ovaries.

Good luck with your appointment. x

Alice1971 profile image
Alice1971 in reply to Brownlow

Thank you, you are so right, I think that is why I didn't go to my gp. My periods have been irregular for sometime now. I also have lots of side effects from my medication it all makes sense now. My methotrexate injections can make me sick, a couple of weeks ago prior to scan whilst I was being sick in the toilet I had no control of my bladder and was peeing whilst being sick, even though prior to being sick I'd just emptied my bladder, I'm not talking a dribble either. I've also had terrible period pains, I didn't go to my gp as I suppose was embarrassed and also there's so much going on health wise I never get a straight answer. I will look at the links you have sent me, once again thanks 😊 xx

Brownlow profile image
Brownlow in reply to Alice1971

Have a good look around the Endo Uk charity website and all their pdf guides to see if your symptoms match endo endometriosis-uk.org

If you have endo you would be better off being seen by an endo specialist. See how your gynae appointment goes and then you can decide what to do next. But if endo is suspected I would advise you to choose an accredited endo specialist here bsge.org.uk/ec-BSGE-accredi... and tell your GP who you want to be referred to.

I only know a bit about endometriosis cysts which are called endometrioma. Other cysts I often hear mentioned are 'functional' cysts or cysts due to polycystic ovary syndrome (PCOS). But your other period issues add up to being suspiciously like endo in my view. Bear in mind it could be something else.

It does sound to me as though you need to really get back to basics and research autoimmune diet/protocols and anti-inflammatory diet. By all means include modern medicine in your protocol but in my view it is not the only answer and is very poor at dealing with autoimmunity. Look up 'leaky gut' as well. I am reading that if you have an autoimmune condition that you most likely have a leaky gut. This needs to be repaired before you can move forward.

Good luck with everything. x

Aurorasparkle profile image
Aurorasparkle in reply to Brownlow

Hi just to say bronlow methotrxate is a very useful drug and it should not be stopped without medical advice. Yes diet has a part to play but medical input is paramount in autoimmune illnesses.

My mum has lupus and has been on this drug to control her disease.

X

Brownlow profile image
Brownlow in reply to Aurorasparkle

My words were "By all means include modern medicine in your protocol but in my view it is not the only answer". My message is to consider BOTH modern medicine and other strategies but NOT just one or the other. Sorry if this was unclear in some way.

Alice1971 profile image
Alice1971 in reply to Brownlow

I understood what you ment 😊 and appreciate all comments xx

Brownlow profile image
Brownlow in reply to Alice1971

Thanks Alice! I would also point out that a couple of the sites I mentioned in the post above are run by people who are also trained in modern medicine one of whom suffered an autoimmune condition and felt let down by all her medical training when trying to overcome it. She expanded her view to include her whole lifestyle including diet, environment etc. and managed to address her health issues.

Good luck with everything. x

Aurorasparkle profile image
Aurorasparkle in reply to Brownlow

Apologies x

Brownlow profile image
Brownlow in reply to Aurorasparkle

No worries! x

Alice1971 profile image
Alice1971

Yes methotrexate certainly helps with my arthritis Aurorasparkle x

Rockflower profile image
Rockflower

Hi. I had a 10x12 endometrioma removed just before Christmas...... I can tell you it was causing me excruciating pain so these cysts are no doubt causing you a lot of pain on top of everything else. There are lots of different types of cysts so I guess they need to establish what they are. If it is an endo cyst, just insure they excise and remove it if you have surgery.... Don't get it drained! I made this mistake and it just re-filled and grew bigger after my first surgery.

I also have chronic fatigue syndrome (ME) so my health is rubbish too. But since the surgery at least some of my pain and problems have been relieved.

Wishing you good luck. Let us know how you get on.

Alice1971 profile image
Alice1971 in reply to Rockflower

Thank you flowerpotts, I'm still waiting for my appointment, hopefully it won't be to much longer I will keep you informed 😊 xx

Alice1971 profile image
Alice1971

Hospital rang today, I've an appointment for Tuesday 3.40pm, nerves kicking in now, I'll let you know how it goes xx

Rockflower profile image
Rockflower

Glad you have an appt so quickly! Wishing you luck..... It's probable you will have to have surgery so I hope it's booked in quickly. I'm sure they won't make you wait too long with them being that size hun. Trust me, you will probably notice a lot of pain relief when they are gone x

Alice1971 profile image
Alice1971 in reply to Rockflower

Aww thanks Hun, I wouldn't care Its come at the worst time. I'm booked to go to Florida on 16th April, my health comes first though, if they say no I'll just have to rearrange it, but you never know they might say yes lol although I doubt it xx

Rockflower profile image
Rockflower

Oh no... That is rubbish timing. I was supposed to have surgery at the beginning of december, but it got cancelled on the day (I had been at the hospital from 11am , nil by mouth, and they cancelled at 5pm!) totally cried as I was in such a state with the pain. Got rescheduled for the 20th and I didn't leave hospital until the 23rd (had a drain for two days and took a few days to get mobile) so all my christmas plans were ruined! But getting the cysts removed took priority. Good luck hun x

Alice1971 profile image
Alice1971 in reply to Rockflower

Well I've been to appointment, I've had the CA 125 blood test, they will ring me tomorrow with the reading. He explained that they were very large, he's doing blood and in to go for an ultra sound in 2 weeks, he said he cannot rule cancer out until we have results of blood and ultra sound results back, he did say even if the markers are raised it does not mean it is cancer, however though if the number is around 200 mark it would mean it is. He said normal is between 10-12 so we will see when it comes back tomorrow. I explained about my holiday he say go and enjoy it, he wants ultra sound done on 14th then he says that gives us time to plan what treatment is best for when I return. He was lovely. So I will let you know tomorrow what the reading is 😊 x

Alice1971 profile image
Alice1971

Hospital have rang, the blood test is within normal range, I am delighted thank goodness, I'll still most likely will need an op however now I know it's nothing bad 😊 xx

Rockflower profile image
Rockflower

Hi.... Im glad to hear the bloods came back in within normal range and the cysts are not cancerous. That's a huge relief. I'm also glad you are able to go on holiday after all.... Hopefully you won't have any more pain or troubles whilst away. However, I would be pushing for surgery once you are back as the sooner the cysts are gone, the better you will no doubt feel. I'm sure they won't make you wait too long as there is a chance they could grow bigger and cause more pain.

I will keep an eye out on posts to see how you are doing. Hope the scan goes ok. Good luck and enjoy your hols x

Alice1971 profile image
Alice1971 in reply to Rockflower

Ah thanks I will let you know xx

Alice1971 profile image
Alice1971 in reply to Alice1971

Hi flowerpots I went for an ultrasound on the morning of 14th April 2 days before my holiday to Florida I thenwent back in the afternoon for results where I saw a junior member of staff he said they are going to remove the cysts he is unsure what will be removed as they wont know the total damage u till they open me he said operation would be around 8-12 weeks which I thought that's ok, only for my daughter to inform me while on holiday the operation is going to be on Thursday 6th may, I flew back from Florida on Friday morning then had to go to hospital in the afternoon for my pre op assessment. I wasn't expecting it so soon but pleased that I don't have to wait, I shall let you know how op goes once I'm out of hospital 😊 xx

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