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Endometriosis UK
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Endometrioma 5 years after total hysterectomy.

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.

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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

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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

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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.

:)

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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

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:) 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

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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

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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

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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

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