Endometriosis lesion / cyst right ovary post meanapause ... Had one 12 years ago .. this one is big very worried

[diww1]

I am very worried .. I've got an endo cyst /. Or hemorragatic cyst .. I am 56 post meanapause and cannot have surgery .. I have had the cyst at least 2-3 years It was found in Sept 2018 . I was told for 4 ultrasound scans it was a large simple cyst .. but a CT and MRI said it was not . It's 6.2cm x 5.2cm I am also obese and have a history of endo ovary cuts this makes.risk of it being malignant higher ... I know no one can diagnose me and I don't expect that .. but the pain has just started in the last couple of weeks I am waiting to see Gynaecologist .. I am worried because my symptoms have changed and I am on pain and wasn't before

Anyone had similar experiences x

[Angie245]

Hi, I had a hemorragatic cyst removed in October. It was only 4.6cm. At first pain was intermittent I didn’t quite know what was wrong thought it might be lupus symptoms. I also struggled to eat as felt nautious a lot especially after eating. Then the pain and bloating became severe that I couldn’t stand so I took myself to A&E. the cyst had began to leak and that’s why it had suddenly become so painful. I eventually needed it to be removed as it had leaked in and around my lower organs.

I don’t mean this as a scare story but the onset of sudden pain or it being more painful maybe because it has leaked or burst. My dr also said it can get worse at the time of ovulation however with you being post menopause this would be impossible.

A lot of cysts turn out to be benign and they can usually tell by the way the cyst looks on scan or MRI. They are pretty skilled.

Do you have a reason why you can’t have surgery?

I hope this has helped! xxx

[diww1 in reply to Angie245]

I hope you're ok now .. yes I have several reasons why I can't have surgery .. I have a blood clotting disorder sometimes those with Lupus have it, some have surgery with it but I don't only clot .. I hemorrhage go. I lost 4 1/2 pints of blood having a few bowel polyps removed with colonoscopy .. I have lots of health conditions and am in very very poor health .. very obese and sedatory 25 years .. a surgeons nightmare .. even when I was ,slim and fitter I was told ok a few cases no surgery .. I likely wouldn't get on the operating table or hemorrage post op .. DVT is risk post op with pelvis surgery especially with my blood condition .. my Gynaecologist has already said she wouldn't operate when they thought it was a large simple cyst

Was yours ok benign etc x

[StefaniaJW]

Why can't you have surgery? Anyway don't go ahead before time.

I have seen a lady with a 20-cm endo cyst a week ago on this forum and a friend of mine had a 10-cm cyst. They both had surgery and were fine. I know your worries are not about the sixe but rather the pain and the possibility of it being malignant, but the best thing is to stay calm and make sure you seek an EXCISION surgeon to discuss surgery or how to proceed next. If I were you, I wouldn't see any general gynecologist.

[diww1 in reply to StefaniaJW]

Many thanks for your reply the reason I can't have surgery is in my reply above to another member .. it's a worry because I've had it 2-3 years the size is similar in that time 1cm bigger maybe but my symptoms have changed and I've been told it was a simple cyst by 4 different people who ultrasound scaned it .. now suddenly 3 months after last ultrasound I am told by CT and MRI it's not a simple cyst

I am post meanapause and that why it's a bigger worry

It's very rare for post meanapause women who aren't on HRT to have one

I have other High risk factors

I wouldn't want a general gynecologist but an oncologist gynecologist at least what's the one you mention

Did you and someone you know have the cyst removed or ovary and uterous also and are either of you postmenopause x

[diww1 in reply to StefaniaJW]

Apologies re-read it's your friend and someone on here . Did either have hysterectomy and ovaries remove and were either post meanapause that's very relevant as endo should go or be less.severe and mine is the largest I've ever had

[StefaniaJW in reply to diww1]

You won't have to get your ovaries or uterus removed, but if you WANT to, tell that to the surgeon who will operate on you.

When they said it's not a "simple cyst" did they mean it's probably tumor or did they say it's an endometrioma/chocolate cyst? They are very different

[diww1 in reply to StefaniaJW]

Indeed they are very different

. They said in MRI it’s likely an hemorragic or endometrioid lesion .. but it’s dangerous because it’s large and I am on warfarin if it bursts I am in trouble .. plus being post menopause and obese and having endo over 10 years it could of turned malignant as endo can sometimes especially after menopause

The ultrasounds of which I had 4 were either wrong or it’s changed since September 2018

[StefaniaJW in reply to diww1]

No. An chocolate cyst is not dangerous to remove if the surgeon is a skilled excision surgeon. What is dangerous is to WAIT. If you wait and it's quite big, it might burst (might, not trying to scare you here). How big is this cyst? 10 cms? 20 cms?

Anyway it doesn't matter because a skilled surgeon will drain it and excise it no matter how big it is. Then it will be sent for hystological examination to prove what its origin is (endometriotic, cancer, etc..). Please, seek an experienced excision surgeon ASAP. There are several working within the NHS and privately.

You can read my profile bio for more information on this

[diww1 in reply to StefaniaJW]

That's the issue I cannot have surgery and if it bursts it will end my life because I am on warfarin .. it's 6.3 x 5 x 4cm

[diww1 in reply to StefaniaJW]

endometriotic lesion postmenopausal

Usually, endometriosis does go away after menopause. However, it can come back when you are on MHT, (hormone treatment) but this is rare.

Even more rarely, it can return spontaneously (without women on Hormone treatment)

As it needs estrogen.

If endometriosis does occur in the postmenopausal period, it is less common, is present in smaller volumes and is less active

But this lesion is largest I've ever had ???

The risk of malignant transformation of endometriosis deposits is higher in postmenopausal women.

Especially in women with long-standing history of ovarian endometriosis.

Which I have over 10 years

Clinicians should be alert to the possibility of endometriosis in any postmenopausal patient with symptoms of the disease.

If endometriosis is confirmed on investigation, a careful follow-up of such women on a long-term basis is necessary for future adverse outcomes.

Obesity and unopposed estrogen are 2 risk factors, which have an additional effect for significantly increasing the risk of cancer in endometriosis.

I've been super morbidly obese for over 20 Years

Use of GnRh analogues, danazol and progesterone, appears to be ineffective in postmenopausal endometriosis.

So I am in a real situation

[StefaniaJW in reply to diww1]

1) Endometriosis produces its own estrogen

2) There are several cases of big cysts in postmenopausal women. The fact that it can only return a little after menopause is not always right. There are many surgeons who operate on post-menopausal women with severe endometriosis

3) Yes, it might be cancer, which is why you need to undergo surgery and get a biopsy.

4) Why are you on warfarin, may I ask?

[diww1 in reply to StefaniaJW]

I am on warfarin for a blood clotting desease I have clots and even when I was off warfarin (for a colonoscopy to remove bowel polyps) I wasn't anticoagulated and I hemorraged and lost 4 1/2 pints of blood because my clotting illness can also cause severe hemorrages too after surgery particularly

Some with my blood.clotting llness have surgery but I have reasons why surgeons always say no

My Gynaecologist has already said no a few months ago when she thought it was a big simple cyst she's meant to be contacting me now ..as another of my specialists did a scan for another reason and that found it was not a simple cyst

I have so much serious ill health I .a surgery risk for more reasons than just my blood clotting illness

I am sedatory for 20.plus years

Double.the weight I should be

Asthma ..I've had 3 rectal hemorrhages in 2 1/2 years

Two of they don't know why

I have spinal cord compression.in my neck so if I lay on my back my arms go dead and it could cause serious damage

I have other health problems

No surgeon will.touh me

So this will end my life if one of the

Other things don't first

The.MRI shows I have mild bladder distention I have 4 conditions including this cyst that are contributing to that

Multiple prolapses and a pessary

Constipation serious all my life

This.cyst

And Instertial cystitis

I.am exhausted 24/7 with 36-98

Very hot flushes with full body sweats 24/7 for over 2 years

I am sure are related to either the cyst or high ferritin I have

Although the high ferritin came 8 months after the hot flushes and sweats began ... My ferritin was normal the month after they began so it's likely the cyst .. I've been scanned and tested for everything else that could be causing these hot sweats it only leaves the cyst and high ferritin and by the above dates I don't think it's the ferritin

Although iron is said to be related to endo and my ferritin has been awful

Here's timeline

Hot flushes began 1 Dec 2017

Jan 2018 ferritn totally normal 20

August 2018 ferritin 585

Sept 2018 cyst found by change

So I think the hit flushes / swears are being driven by the cyat they are so regular

Something is driving them.i get 2 to 4 every hour day and night

Something is causing the Hugh ferritin too it has been 700

It was 450 last few months

I am in a dreadful situ x

[StefaniaJW in reply to diww1]

Hot flushes are extremely common during menopause.

Having several health issues (a clotting disorder, spinal cord compression), obesity and also prolapses are serious issues that need to be tackled.

First of all, it's so weird you are on warfarin if you are prone to hemorrhaging because warfarin can cause hemorrhages in those who are prone to them.

You need to lose weight according to what you said but at the same time, sudden and significant weight loss can also be the culprit of prolapses so you need to undergo that with a nutritionist who will help you lose weight "well", slowly and in a healthy way.

Ferritin can be high in people who are prone to hemorrhaging sometimes for some reason. I strongly recommend seeing a haematologist ASAP.

You need a visit with a haematologist because you cannot go on like this.

Also, I might know the names of surgeons who might be willing to perform surgery despite your circumstances but I think you still need to see a haematologist before so book that

[diww1 in reply to StefaniaJW]

As my list says I am post meanapause I had no got flushes in my meanapause at all that's why it's odd to start one day and never stop

They are nothing to do with the meanapause

I've been under too hematologists for 25 years .. I clot much more than hemorrage .. hemorrages have only occured in the past two years

My blood clotting disorder needs life long warfarin .. I used to be in 3 blood thinners now only warfarin my hematologists are top consultants after 25 years I am still here

I can't have prolapses repaired or my knees replaced or my gall bladder out

I need many surgeries and I can not have one

My ferritin isn't connected to hemorrages ..

I am basically waiting to see gynecologist

[StefaniaJW in reply to diww1]

I understand everything perfectly now and the situation clearly is complex.

I strongly recommend undergoing an endo diet first because you cannot continue like this.

I would also recommend seeing a naturopath. You cannot not tackle these hot flushes, you need to sort them out and it sounds like most of your problems lay in significant hormonal imbalances

[diww1 in reply to StefaniaJW]

It could be and I had thought about looking at that .. I am so ill.i can barely go.out .. it's a very difficult situ thanks for all your messages .. it will.deoend what the endo diet is because I can't eat many things .. die to warfarin as that clashes with many foods... Then my gall bladder flares with some foods and so does.my hiatus hernia .. it's all becoming almost impossible x

[diww1 in reply to StefaniaJW]

I will ask to be tests for hormone imbalance because kak it's shows is I've been through meanapause.. the endo diet i.am doing almost .. except I could cut out all caffeine and I e not done Gluten-Free or Low-FODMAP

But I couldn't do that as I can't eat or of.thr things I would need to... I can't eat soy either

[Afrohair in reply to diww1]

Hiya I’ve read to the end of this post it’s clear that you have several issues so docs won’t touch you with this cyst I totally understand the blood clotting as well because my dad has a blood clotting disorder and I have to mention it to anyone who wants to do surgery on me I don’t have it right now and may never get it but I know what my dad goes through and what I do say a lot the best thing to help at the minute will probably be your diet and cutting down on alcohol caffeine and smoking it would be difficult and you can do it gradually not all at once there’s no way you can change your diet all at once try small changes first like gluten then move on to diary free etc I’m guessing you might have tried these things but can’t be certain I would say you need a diet plan you can stick too at the minute hopefully there may be less invasive ways to drain the cyst I’m not sure but you may be able to look into it as you say your blood clotting may still be a issue no matter what losing weight will also help any pressure that might be sitting on the cyst sorry I can’t be much help I’m so sorry you’ve had to be in so much pain all the best x

[diww1 in reply to Afrohair]

Thanks I really appreciate your reply .. I am on healthy eating t try to loose weight but being almost totally immobile I can't do any exercise .. lower due to knees cyst and prolpases and upper due to spinal cord compression

I have got too many things wrong now .. it's making it so hard x

[jasne77 in reply to diww1]

Have you tried physical therapy? There are very effective exercises you can do in a sitting or horizontal position. After those you could start doing water aerobics and swimming. Don't give up hope what you need is patience and the right person to guide you through the steps.

[diww1 in reply to jasne77]

Thanks .. I can't use any core muscles due to multiple female prolapses and the cyst

Have you had therapy for a similar issue

I thought exercise can burst or twist a large cyst

[jasne77 in reply to diww1]

I got my physical therapy for my damaged lower spine years before I was diagnosed with endo. Have had endo symptoms for 30 years and at least one bursted cyst when I still worked as a joiner. Only last year I was diagnosed with endo. So all I can tell you is that the exercises improved my mobility and were not pain or harmful in any way. A good physical therapist will ask you in detail about your medical history and then choose the exercises.

[diww1 in reply to jasne77]

I have so much wrong now including bone on bone knees .. the spine issues .. the cyst the prolapses .. I can't have any surgery at all .. I think they can only leave me to cope on my own .. my gynecologist hasn't responded to a request to see me urgently ..she knows she can't do anything with me .. it's a very difficult situ for my medical specialists ..having a cyst burst must be awful ..if mine bursts or twists I will likely loose my life .. it's 6.2 x 5 x 4 and I am on warfarin x

[Annie2609 in reply to diww1]

Hi,

Your situation is similar to mine in that that we both have endometriosis, and an endo cyst.. although mine isn't fully diagnosed as endometrioma, but this is what the doctor suspects based on my history of endo and the fact that I had the cyst for a long time (about 10 years). Mine is smaller - 2.3 cm though so the risk of bursting is lower. However they told me from the beginning that it looks "complex" with a solid nodule. I am in perimenopause and I understand that the risk of cancer is raised at menopause. The gynecologist said that endometriomas have a low chance of being malignant. You need someone very experienced or even a 2nd / 3rd opinion on what to do. I asked my gynecologist friend in Europe after talking to the Canadian one, and both had the same approach - repeat CA125 blood test and ultrasound in 3 months and if any significant change in size, I will go for surgery (risk of surgery is high for me as well).

In your case, I would be concerned about age (menopausal) and the risk of bursting as the cyst is bigger. .. otherwise an endo cyst has a low risk of cancer..

Hope you can get some more opinions.. all the best, keep in touch

Annie

[diww1 in reply to Annie2609]

Thanks for your reply ... Mine has grown after staying the same size for 10 years or more ... It's grown 2cm approx

It is now 7cm x 6.5cm x 5.5cm

It should come out because it's bleeding inside itself and I am on warfarin

But my oncology gynaecologist won't operate on me until I loose 5 stone

I am already huge risk due to some of the Illnesses I have and my weight is just another added high risk

I am huge risk .. there's a chance mine has turned malignant due to growing and the bleeding

But I won't make surgery so he wants to lower my risk

Even if I was 5 stone lighter there's still huge risk I have a blood clotting disorder and a history of clots a d hemorrhages

I have three autoimmune Illnesses

Asthmatic a bad liver and many other risks

I hope you can get the help and support you need have they decided what to do in your case ?

I

[Annie2609 in reply to diww1]

I understand now. If it's growing then surgery is usually recommended. Mine stayed the same, however CA 125 is above normal.. so we decided to repeat the ultrasound and blood test in September. If it's growing they want to operate.

It's good that you have a gynecologist oncologist.

[diww1 in reply to Annie2609]

It’s good they are keeping an eye on it for you that’s good