Endometrioma 5 years after total hysterectomy.

[deemdiane]

Has anybody else produced an endometrioma years after a total hysterectomy?

I'm rather confused, a recent CT scan and Ultrasound showed I had a 6cm diameter mass in my pre-sacral space (rather rare). An MRI a month later showed the mass had disappeared (didn't feel anything) but because it was a complex adnexal cyst with a thick wall and separate compartments it has been assumed to be an endometrioma.

I don't have any ovaries and my FSH is 70 into the post menopausal bracket so how can my body produce a 6cm chocolate cyst? When my endometriosis was really bad before my hysterectomy 5 years ago I didn't produce these cysts, I believe my endo is worse again but how and why would my body produce these now with no ovaries and depleted estrogen reserve?

Any help would be appreciated. My gynaecologist discharged me by letter in the post when the MRI showed the mass had disappeared. All it said was that my tumor indicators had come back normal and don't take any form of hormonal HRT.

[mierran]

Hi , FSH of 70 isn't high enough to assume post menopausal it can be higher during the follicular phase of your cycle and, having had a hysterectomy, your cycle stage will be unknown. I know of women with higher FSH levels taken day 3 who were still cycling and having periods ( including one who got pregnant), so everyone is different. However it may be you are having anovulatory cycles which are allowing the endo to shrink in between.

If they think it was an endometrioma are they saying that was your ovary very displaced? Or just endometriosis?

Are they saying that the cyst has ruptured or resorbed? Are there any signs of residue.

Good luck and it is all a bit odd. X

[deemdiane in reply to mierran]

Mierran thank you so much for replying.

I am being told nothing so trying to gain some information myself including requesting my medical records. All I received was a letter in the post saying the mass had disappeared and they were discharging me. Also that in case it was an endometrioma to not take any form of hormonal HRT. I found out the details of the cyst (complex etc) from reading what was on the consultant's computer screen regarding my scan. He told me I was an unusual case but I thought after the MRI I would know more and then I just got the letter.

I requested the FSH blood test from my own GP, I thought 70 was high but thanks for your explanation, I was just shocked that my body had produced a cyst without ovaries.

I phoned the consultant's secretary and said I need to be seen again for an explanation and they've given me an appointment at the end of June.

I can only assume they have put the disappearance down to it being ruptured although I didn't feel it. I had gallbladder surgery while I had the mass and perhaps it happened then and with being on morphine straight afterwards I didn't notice any pain.

Thanks again for speaking with me, I've felt a bit lonely in this xx

[mierran]

Big hugs. I am sorry you are feeling alone in this. It is a hard journey and a horrible disease. Real life people get fed up very when you don't get better so I just don't talk about it , and even if they ask I tend to be a bit vague. I have found people don't really want to know the answer and glaze over if you actually tell them.

It is odd if they definitely removed both ovaries completely but there could be ovarian remnants especially if you had ruptured cysts previously. You don't take any natural remedies which could affect hormones?

I suspect that they may well work on the theory of " whatever it was it isn't there now" unfortunately.

Big hugs and feel free to pm me if you ever want a chat.

[deemdiane in reply to mierran]

You totally nailed it when you mention other people's reaction, sometimes I start to explain and wish I hadn't so like you I tend to be vague.

I had an ovarian remnant because my left ovary was sealed to the pelvic wall but they insisted at the time that it was really tiny and would die off pretty quickly. At that time my bloods showed me to have a low FSH and plenty estrogen and I didn't go on HRT for 2 years after the hysterectomy until the bloods indicated menopause and I had terrible migraines and it seemed to help. I came off HRT a few months ago and waited to get bloods done until this would be completely out of my system. I'm guessing that the HRT probably facilitated my production of the endometrioma?

I think with the backlog for appointments that they were pleased to just discharge me without bothering to investigate further.

Thanks Mierran, it's so nice of you to take the time to reply to me xx

[mierran]

you're welcome

I think unfortunately the hrt did cause you the problem. I know the fastest growing sector of endo diagnosis is in postmenopausal women on hrt ( and also trans women on hrt). So it will have fed that remnant, and any other bits splattered around the place that they couldn't remove. I have already accepted the fact that I won't be able to have hrt as my endo is infiltrative and I have nerve damage etc. So no way will they be able to remove it all ( even if they do the peritoneal strip and total pelvic clearance they are talking about, despite what they say . )

How are you finding it now off hrt? I am perimenopausal and had problems with migraines hot and cold flushes ( I didn't even know you got them :)) etc. I am currently hoping I go into the menopause naturally before they chop all my bits out but my fsh stays stubbornly low ( was 6.4 last year on day 3. ). Quite ironic considering the fact that I was told I had low ovarian reserve 10 years ago and needed donor eggs to have my kids as I didn't respond to stims for ivf.

It's a shame people can't be more supportive. But c'est la vie, as they say.

Anyway, sending you another hug. X

[deemdiane in reply to mierran]

Hi Mierran, I was rather bullied consistently to take HRT before I even left hospital after my hysterectomy and as I dug my heels in over the months the more professionals treat me like I was an idiot and I was told I was practically self harming!

I never intended on taking HRT and if they'd found anything else to cure the constant migraines I probably would have continued the fight to stay away from it. Now I feel rather disappointed that I've traded migraines for my current problems.

I must admit I'm feeling pretty okay not taking the HRT with the exception of urinary problems and repetitive UTIs. I've currently got a rather nasty kidney infection that isn't responding well to antibiotics. A lot of my endo was around my bladder and ureters and without the HRT I have an over-active bladder which is a pest but not the end of the world.

Your FSH is certainly low, very strange considering your problems with having children, sometimes I think our bodies don't stick to what the text books say and have their own ideas...just to confuse us!

So nice to speak to you and thanks for the hugs, here's one back to you xx

[reshmalubin]

Hi everybody my gyno advised me to do total hysterectomy to live a healthy life. Anyone one can tell me after doing that is it guaranteed if the endo pain will not come again. Please help me

[deemdiane in reply to reshmalubin]

Hi Reshmalubin,

A hysterectomy isn't a cure for endometriosis, it will help and improve your quality of life but the endo will not be completely removed.

The best way to help yourself if you proceed with the hysterectomy is to not go on any form of HRT because it will feed the endo and you end up back at square one. The hospital and menopause clinics will insist that you are safe and in fact scare you into believing that you are harming yourself by not taking it but that's not entirely true. Don't take HRT and take supplements to help with the menopause symptoms.

Only you can decide what is best for you, the hysterectomy is a huge operation and life changing so make sure it is what you want.

All the best in whatever you decide and your future health xx

[diww1]

I am sorry you've had to go through this I empathize . I am definitely post menopause and had an endometriosis ovarian cyst before meanapause it was 4cm .. I had no endo cysts since 2008 and I'm Sept 2018 they found by chance a large what they said was a simple cyst .. fast forward and 4 ultrasounds later all saying simple cyst .. a CT identified differently and a Pelvis MRI showed a. 6.2 x 5.3 x 4,cm which is either endo or hemorragatic .. I am worried as I am post meanapause and it's the lagest I've ever had .. like you I never had HRT so I am worried why I have it waiting to see Gynaecologist .. so I understand .. i wish mine would go .. I don't think it will it's been there at least 2-3 years .. my confusion is being told it's simple now not unless it's changed which is a concern as I've symptoms that aren't good ... I hope you get to the bottom of your situ x

[deemdiane in reply to diww1]

Hi diww1,

I hope you get some answers, the worst thing sometimes is the not knowing and I find that sometimes the medical profession aren't always completely forthcoming. They believe it is to protect us or not to confuse us with too much complex information but in my experience women with endometriosis are well aware of their own bodies and have done extensive research and would prefer facts and full exposure from their consultants.

It was also by chance that my cyst was found and at the ultrasound I was told it was a simple cyst (6cm diameter) and nothing to be concerned about. 2 weeks later I saw the consultant and I read a computer screen where it clearly identified it as a thick walled complex adnexal cyst but they didn't offer me this information, I deliberately read the screen myself and then quized them. They did cancer indicator blood tests that were thankfully negative.

It was pure 'luck' that when I went in for emergency surgery for my gallbladder that they accidentally burst it and since I was on morphine I didn't feel a thing. Few days later an MRI showed it had 'disappeared'. The consultant assured me that my body would absorb it all and referred to it as a build up of fluid trapped between adhesions, which to be honest sounds a bit far fetched considering it had 'thick walls'. I requested my medical notes and images of all my scans and I then read endometrioma.

I understand why my body could produce these cysts because my hysterectomy was complicated and one of my ovaries was attached to the pelvic wall so badly that they left a fragment. I had a fight on with the consultant when I claimed I hadn't gone into menopause, he treat me like I was a mad woman and in fact declared 'all you need is HRT and your problems are solved'. Rather arrogant I thought so I had my own GP do bloods and proved the point, I had ovarian remnant syndrome. It took a long while for this fragment to stop producing estrogen and for me to go through the menopause and during that time the endometrioma must have grown.

What I find in common with your predicament though is that I have now been post menopausal for some time and have started to have symptoms not only of another cyst in the same place but also hot flushes at night. Could my ovarian fragment of started producing estrogen again??

You never mentioned if you had gone into a natural menopause of if you had a hysterectomy?

The moral of my story and the advise I would give to you is don't just accept everything the medical staff tell you, push for your notes and scan records, question them and if your gut tells you that you are right about something or what you are told just doesn't seem right, listen to your gut and push for the answers you deserve.

I wish you all the luck and hope you find some peace soon xx

[diww1 in reply to deemdiane]

Thank you so much for sharing your story it sounds so similar to mine .. I think you're right about possibly ovarian remnant syndrome in my case because of my past history and current situ .. I've not found anyone with such a similar story .. I too have gall bladder issues sadly I can't have surgery due to many serious illnesses .. and past hemorrages and clots .. mine too is 6.2cm like you said yours was 6cm mine is 6.2cm x 5.2cm x 4cm

I went through natural meanapause about 3-4 years ago no hysterectomy

I say about because I'd had a uterine ablation over 10 years ago so never had any more periods

My blood tests from 2016 show it started around then

I know mine is said to be thin walled either hemorragatic or endometriotic

With debris inside and it's bleeding inside

Did you have pain and symptoms from yours prior to them bursting it

Being large I fear internal bleeding as I am on warfarin

So was you going through the meanapause when you got yours

Had you had any of these cysts before

I am so glad yours is gone they are awful sometimes this is the largest I've had x

[deemdiane in reply to diww1]

Hi again,

Thanks for your kind reply, it is good to talk to someone that has similar problems.

I did have pain from the cyst particularly in my back and hips but I was told it was the endometriosis that had returned because it was positioned where they found the worst diseased areas during my hysterectomy. The cyst was at the base of my spine (pre-sacral space).

It is difficult to tell you whether I was menopausal/post menopausal when I first got the cyst because who knows how long it had been there, whether it was after my hysterectomy when the ovarian fragment was still producing estrogen or much later. I do know it was increasing in size quite rapidly though because only 2 weeks after it being found on the CT they sent me for an ultrasound and there had been roughly a 1cm increase in diameter and at that time I was definitely post menopausal.

Strange thing though, during all the years that I had endometriosis and fully functioning ovaries I never suffered from cysts and when the pathology report was done after my hysterectomy they only found very few small ones so why once everything was removed I should suddenly produce such a large one is beyond me!

I hope you get answers and they can do something to help xx

[diww1 in reply to deemdiane]

Thanks .. I don't understand why I have the largest cyst I've ever had and I am post meanapause .. as I mentioned... I don't know where the estrogen is coming from to grow this cyst I am not on HRT and never have been. I am obese and I wonder if it's that as estrogen is stored in the added fat .. I am worried it will be malignant or turn malignant

Or burst or twist .. endo cysts can bleed a lot and I am on warfarin ..

You were fortunate yours didn't cause serious Internal bleeding

It's a horrible condition isn't it .. how are you now x

[deemdiane in reply to diww1]

I am obese too! That's another factor we both have in common to increase the estrogen, that makes sense, but otherwise I am like you, I am post menopausal and don't take any HRT.

My body absorbed the blood well when mine was burst but I'm not sure about you being on warfarin, perhaps that's something you should ask the consultant when your appointment comes through to give yourself peace of mind. I did worry that the blood would cause more adhesions, I have a lot of those and they cause enough issues without adding to them.

I am actually doing quite well just now thanks, the return of hot flushes at night aren't appreciated and nor is the lower back pain and my hips again but after years of living with the pain of endometriosis I can hardly complain. I do suspect that at some point in the future they will find yet another cyst at the base of my spine and then I don't know what they'll do.

I have to leave now to visit my elderly parents, chat again soon xx