Ultrasound - small amount of Endo - feeling fobbed off!!

Hi,

I had my ultrasound this morning, and the doctor said he thinks he can see a small amount of endometriosis (on what i presume was an ovary, although he didn't really tell me much).

He asked for a little history, and i gave it him, also telling him how painful my periods are, and showed him the scars on my belly that i have from using a hot water bottle so close to my belly to relieve the pain. He sort of fobbed me off a little and carried on, and still said that my periods weren't painful - after correcting him on it twice!

I asked what he thought i should do, and he said about the mirena coil as my consultant thought that would help. I explained i didn't really want to rush into it as I've heard it can cause a lot of pain, and he agreed saying it is painful to put in.

That was it. I left feeling completely bewildered as to whats going on down there, and have been told to wait 10 days for my letter from the consultant, but with christmas i imagine it will be mid Jan before i receive anything.

I just feel like now I've finally been diagnosed to have Endometriosis, that I've been fobbed off about how painful they really are to me! Im not one to stand my ground very well and just take what they say as what i should be doing.

Any advice would be great though as i have a doctors appointment in the morning to get some more Micronor (POP Pill), and a clinic appointment tomorrow night to fit a coil (which I'm going to cancel).

Thanks Xx

7 Replies

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  • Which Doc did you see? Was this your GP or the gynaecologist?

    If there is even suspected endo- then you need to be scheduled for a laparoscopy, and that is not only to confirm the diagnosis- but to map the scale of the disease and And AND

    use that general anaesthetic time to have the mirena put in.

    The hurt part is getting it put in, but if your are knocked out then that's the very best time to get it put in. Whether your endo is entirely removed for now - or anywhere up to very severe and everywhere, stopping your periods by using something like Mirena will improve the endo situation and been one meaans of preventing furher spread of it through the fallopian tubes, as well as stopping your monthly perios and period pains etc.

    So next step is if that Doc was not a gynae- you need to ask for referral to a gynaecologist.

    If that doc was a general gynaecologist- you ned to now be referred to an Endo gynaecologist, one who has experience and specialises in endometriosis.

    And most general fertility gynaecologists do not. So that is the next step.

    Save the mirena being put in till you have the op and get it done at that same time.

    An ultrasound will rarely even detect any endo- never mind the fact it can never tell how much endo there is or any of the locations or indeed how deep it is.

    Going on the Pill in the meantime is a good idea- at least while you push for a diagnosis, you are taking back some control of the periods.

    Be brave and be insistant that you get reffered to the right people to undertake the laparoscopy. It's the only way to be sure you have endo and the only way to get endo cut out or lasered back if it is only shallow surface endo.

  • Hi Impatient.

    I saw a general gynaecologist first, and then he referred me to the doctor that did my ultrasound today - he is apparently one of a few doctors who can 'spot' endometriosis on an ultrasound.

    I know he definitely said that he could see a small amount of endometriosis, and when he asked about what my gynae had suggested it could be, i told him he thought endo and told him he offered me the mirena, and if not that then he would consider a Lap. This doctor then just sort of looked at me and carried on.

    I had heard that the only sure way to do this is to have a lap, and so i was surprised when he had admitted i had some endo and then just told me to have the coil (especially as I'm only 22 and have no children yet).

    You've helped put my mind at ease, i now know that i am essentially being messed around and i will mention this to my doctor tomorrow, thank you! x

  • That's the first I have ever heard of it being spotted on an ultrasound I'm a tad skeptical myself. I'm sorry but you will find a lot of doctors fob you off. most iv seen have no idea what it is or how to treat it. I was told to get the mirena and has done Nothing to relieve any symptoms. Also it wasn't painful at all for me, I think it just depends on the person. I used to be like you and not very pushy with the Doctors but you have to be or, in my experience, you won't be treated properly. Last time I went to the Doctor he said 'i don't really know anything about it so I will refer you to the hospital'. You need a laparoscopy to confirm it and see what extent it is at. They can also give you laser treatment to get rid of it (temporarily). Don't let them give you the run around x

  • Yer i had heard it was hardly ever spotted on an ultrasound, which makes me think that if its been spotted on that surely there is a lot of it? I just don't know what he was on about. Im seeing my GP this morning and ill ask her what she thinks, and hope she can refer me back to my gynae. I know i need to just stand my ground and tell them I'm not happy having the mirena! Thank you Xx

  • I agree with all the comments. Unfortunately endo cannot be seen by ultrasound you will need a laparoscopy. This advice coming from a endo sufferer for 20 years with a medical background. You have to be assertive and fight but it is very hard especially when it is not your character. Good luck.

  • Hi there I had two scans at separate hospitals and both showed nothing but once I had my lap quite a lot of endo was found and treated so imo the scans aren't reliable at detecting endo. Also I got a mirena fitted 5 weeks ago to help with my endo and I was terrified after reading all sorts of horrible things about it that I also thought about cancelling. I took 2 paracetamol before going and all I felt was a small pinch. I was expecting a lot of bleeding and almost cleared Asda out of sanitary towels in preparation but apart from slight spotting for 2 days I had nothing. I'm now wishing I had got the mirena years ago (I'm 34) as it seems to be helping me a lot. Unfortunately if you already have endo then it won't help you would need a lap to treat it but afterwards to stop it growing back I would recommend it. Hope all goes well.

  • Hi, i was thinking the scan couldnt show everything but i wasnt sure. Surely if theyve found a little bit on a scan then i must have more than is showing as the scan isnt very goof at showing it. I am tempted to go and have a coil fitted I have an appointment tonight at the family planning clinic to have it fitted, but i think its wise to wait until my appointment with my consultant to go over my results and see what his opinion is, as if i do need a laproscopy then no point in having the mirena fitted just yet.

    thanks for the advice :) xx