Strange appointment, any help.

[rosesinbloom]

I had a pretty odd appointment yesterday.

I have an endo cyst on my ovary, diagnosed last summer when I had a scan. My specialist wanted my endo mapped this year and to check on the cyst.

After I had my MRI I made an appointment, I made sure it was only with my specialist, as he only wanted me to see him, they assured me it was, but when I got there it was with a different consultant.

Anyway. she told me it was excellent news as my cyst had almost disappeared. I asked if it had burst or shrunk and she said she didn't know. I am on no treatment and haven't had an operation.

I asked for a print out of the report and she discharged me.

When I got home and read the report and my old scan one, I don't see that it's gone at all. The first scan showed it as 9mm and the MRI says it's 8mm. There must be a degree of error in measurements, so to me it seems like it is exactly the same. So I am left very confused by the dr telling me it had all but gone now.

It also says there are small lesions on my left ovary now, which were not there before.

Also, the report wasn't very detailed at all, just a few lines. My ovary was in my POD on the first scan, but there is no mention of that at all in this one, so the doctor says it could still be there, or it could not.

I was also surprised to see there was no bowl endo, as I have pretty extreme bowl trouble during my period.

Is there any way to get further information from the MRI? I'm just not happy with how this has now been left.

[luthien]

That does sound all a bit odd

Endo cannot always be picked up by MRI or ultrasound as it's density isn't that much different to normal tissue, the only real way for them to see it is via a laparoscopy as it can be seen clearly by the eye with a light.

So you'll need to push for that if you want to have the diagnosis - a formal diagnosis of endo is via a lap so at the moment they can't say if you do / do not have it. Of course if you've had the lap then you'll know you have it and it'll be in your notes, but you may need another to look at the growth of it.

See if you can get a follow up appointment or with a different consultant / specialist. They'll request the notes anyway so they'll have an idea of what's gone on. Sometimes they'll start from the beginning and that can be better as you'll see their process for diagnosis.

The lap will also help them see and record any other issues like your cyst, they can take biopsies, and can remove endo at the same time - of course this all needs to be discussed and agreed with before the op.

[rosesinbloom in reply to luthien]

I've been diagnosed as there are traces of it and lesions that appear to be endometriosis or the results of it.

I also cannot have a lap due to other medical issues, both my original consultant and a rhummy agreed that it wouldn't be the best thing for me and could result in my overall health in the long term.

I just cannot understand her saying the cyst has gone, when it measures pretty much exactly the same as it did last year. It makes no sense to me. I came out kind of on a high, but when I got home and read the previous report I felt a bit down and also at a loss really.

[luthien in reply to rosesinbloom]

Ahh sorry, I didn't know your story.

Can you ask for a second opinion? Different specialist? Repeat MRI? I'm not sure what else to suggest.

Hopefully someone on here can help xx

[rosesinbloom in reply to luthien]

Thanks, I'm unsure what to do really. I don't know whether to go to my GP, but then she's now gone on maternity leave, so I don't know who I'll get.

[girli1111]

Hi, I don’t know your history, but from what you’ve written you have a very tiny cyst that hasn’t changed in size (or if it has its fractionally reduced). My understanding, as someone who has now had both ovaries removed as engulfed by large endometriomas, is that surgery is not usually considered until an endometrioma is 8cm plus - ie more than 10 times the size of yours. As I say, I don’t know your history or symptoms, but hope this puts some of your concerns at ease.

[rosesinbloom in reply to girli1111]

Thanks, that does set my mind a bit at ease. I realise it's quite small, and I couldn't have surgery anyway, not unless it's absolutely necessary.

I suppose I was just a little confused by her saying it had gone on it's own, but then I came home and saw it's pretty much the same, so I just didn't understand why she said that. I guess she must have read the report incorrectly, maybe she read that it was 9cm and now believes it's down to 8mm?