Hi,
I had a cyst removed which after surgery they had suspected it was a endometriosis cyst and said I had endometriosis.
I have just called the doctors and they are waiting for my results from my endo cyst but said there was no traces of endometriosis. I am REALLY confused.
Has anyone had this a endometriosis cyst without the endometriosis. Does this mean I have it or not?
Will I need to follow diets and stuff still?
It may be an endometrial cyst? This is a cyst on the endometrium inside the uterus. Endometriosis is outside of the uterus formed from endometrium like cells.
Do you have your post op notes? Usually they get sent to your GP, you can request them, and we'll help you decipher them, then figure out if it says endo and how we can all help xx
Yes, I have a copy here, it says endometriotic cyst and also mentions endometriosis. The cyst was on the outside of my ovaries.
I am super confused as they said today that no traces on endometriosis was found even though no results have been been confirmed yet.
Does this mean I have endo or not? I have tried to search the net but it's just connecting the two and really confused. xx
If the letter says endometriosis found, then you have endometriosis. Hmm can you contact the secretary / hospital / specialist on the letter and check? Perhaps see if you can book an appointment to see the specialist on the letter?
I think it's common to have cysts and endometriosis, may be some other ladies will be able to shed light on this one x
That is why I am super confused. The post letter after surgery had endo on it but the secretary today said the letter they were going to send out said there was a paragraph saying 'no endometriosis was found'.
I did ask her to tell me a little more but she said she couldn't over the phone and also they had to wait for my results. I guess that is all I could do at this point now just wondered if this was normal.
Even though I have been reading up on it loads I am unsure if you do have it, is it always present and visible and for it to be 'found' on the day of surgery. More confused than ever.
x
Hiya
I am in a similar situation as you. Had ovarian cyst removed in March and hysteroscopy D&C, and Mirena Coil fitted. I couldn’t be sure what my notes meant (“removal of endometriosis cyst with ablation of endometriosis tissue.”). My follow up appt was with a trainee and I asked where the endo was (confined to cyst or elsewhere) he couldn’t read the surgeons notes or interpret the photos from my op so told me to come back to see surgeon I was supposed to be seeing (now booked for Sept). My GP unhelpfully said “they’ve done just about anything but a hysterectomy” but thought it was just an endometrium cyst and endo prob wasn’t anywhere else. If I find out I will let you know!!! I intend to make sure I see my surgeon in Sept to explain in detail/common language what I exactly had. Can you do the same or ask for a phone consultation?
In the meantime I’ve been having pain in right side, back, legs and vagina/pelvis again for last 6 weeks so gp sent me for ultrasound to check position of coil - there’s a cyst on my right ovary again (only small but I have a strong feeling it’s the same as before 😩). Xxx
I know, it is so frustrating isn't it, they tell you these things and then leave it with you, all you have is the internet, which is great but you don't really know in detail what your case is until you speak to your surgeon. I called yesterday but they cannot offer phone consultations and my appointment is not scheduled until late January 2020 (next available one). Yes, please let me know what they say. So you are unsure if you have the endo too atm?
The NHS are great but I find this certain department are a bit slow, it's hard to get answers quickly from them.
Oh you poor thing, it may just be a cyst that will disappear and go away by it's self, have you been avoiding foods and stuff that trigger the endo? Keep positive huni and hopefully you don't have to go through that again - so rubbish isn't it 
x
Quick update- I asked for another ultrasound from my GP which I had on Tuesday. Reception phoned yesterday to book me in for results today (they said it needed to be an urgent appt) so was worried of course! No sign of cyst which showed on my last scan which is great but the Mirena has “deviated” - (fibroids have moved it apparently). GP has said it needs removing at hospital 😩 so booked in on 7 August. At least I know what’s been causing the pain. X
Hiya. Went to see Gynae today. He was lovely and explained my operation in detail and showed my photos! My cyst was full of endo but I also had endo at the back of my uterus which was zapped. I told him about my recent pain and he had copies of the scan that said the coil had deviated. He removed the coil with no quibble and it came out ok. He thinks my fibroids are causing the pain and endo may be back but we’re going to see how I feel over next 3 months now the coil has gone. Really glad I had a list of questions for him. Hope you get answers - worth booking an appointment to check x
Could it mean that the cyst itself was an endometrioma but they found no endometriosis anywhere else?
Yes, I think that is what they are implying.
But does that mean I have endometriosis? I thought an endo cyst was a build up of endometriosis. Would it not be visible for them to see.
I am still pretty confused by the endo stuff still. I thought they would be able to detect it else where if I had the endo cyst there.
I wouldn't say a cyst is exactly a build up of endometriosis. Endometriosis cysts are basically filled with blood, not solid endometriosis cells. More like, when ovarian cells become / grow endometrial cells (endometriosis, in other words), a cyst often forms because that's how ovaries tend to behave in general. Ovaries grow cysts for other reasons as well. When someone has endometriosis elsewhere, the default assumption is that any cyst is an endometrioma, rather than another kind of cyst. I realise that may not apply to you but there must be some reason they think it's an endometrioma.
I don't know what it all means but it sounds possible that you could have endometriosis found only on your ovaries but no where else. Endo is strange, anything can happen.
Alternatively . . . maybe something has been lost in translation. For example, my partner and I were both in the room when I was debriefed by the consultant post-lap, and he heard, "we found no adhesions" and I heard "we removed a lot of adhesions," and basically they found no adhesions in one place and removed a lot of adhesions in another so we were both right.
If I were you, I would request a photocopy of the notes and results once they come in. You do have the right to request this. If you can't get an appointment with the hospital department before Jan 2020, you can always take the notes to your GP and ask if the GP can explain what they mean. But really, if you are confused about what is going on in your own body, it's the gynaecology department's job to at least explain to you what they found and what it means, in a way that you can understand.
Ha woah that is confusing what they told your husband.
Thank you for the email, message and advise, I am very grateful.
I think I am going to just wait for the letter/results to come . I could sit and drive myself mad with what it is, what it isn't.
I wont know until I get confirmation and then take it from there.
Thank you again x
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