Hello ladies. So, Monday marks 5 months post-op (diagnostic laparoscopy) and finally the day that my case will be discussed at the Endo MDT meeting.
Something that has recently come to mind is the NICE guidelines on how to approach suspected Endo - especially as my best friend has Endo and was very confused by the lack of anything happening with my case/treatment.
Something that I have NEVER had is some form of pelvic exam during my time with gynae. I was given an ultrasound to be referred but was denied having a transvaginal scan. When seeing my consultant, not once have I had any sort of pelvic exam - not even just pressing down on my stomach from the outside!
Surely this is something that should have been completed during the process of trying to see if I have/diagnosing Endo? Especially since my consultant is registered at my nearest BSGE centre?
I just feel like I’m getting nowhere with them. A general gynae performed my lap and I genuinely think something was missed but my consultant keeps denying anything being wrong despite saying Endo on muscle of womb, evidence of Adeno and potential polycystic ovaries.
It’s becoming ridiculous now and I am at the end of my tether.
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Lofty1589
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I really don’t understand why they carry out a lap and not do any treatment. Every time I have one they always remove what’s been found. So have they just left the endo in place?
When I see the gynae he always carries out a physical exam, he checks the ligaments and some other things. If you are not happy and feel like things are being missed ask to speak to pals in your hospital and see what they advise. Hope you get answers soon.
I don’t understand it either. I’m in a lot of pain and it really affects me badly on a daily basis.
I have spoken to PALS before saying that I haven’t been entirely happy with everything but they just said that I should wait for the outcome of the MDT meeting because that is quicker than anything else would be. It is honestly ridiculous. My symptoms match up to Endo and my consultant said potential Endo on muscle of womb, but after saying that denies anything is wrong? I just don’t understand and it is stressing me out beyond belief.
Can you ask to see another consultant as you are not happy with how slow the process is taking and it’s taking a tole on your physical and mental state. I really feel for you, to have a professional not listen to you is just awful. They are there to help. You know your body better than anyone. Keep on call every day if you have to, sometimes you have to be like that to be heard.
When I spoke to PALS, I’d sent in an email to my consultant’s secretary as well to be moved under the care of another consultant but it was the same thing of wait for the MDT meeting instead. The next available appointment for the other consultant was in February. I did ask to be put down anyway but they said that he would be in the meeting so it would be pointless. Just hope I hear soon about something being done. I cannot keep taking Tramadol daily like I have to because I’m going to get used to it and then be stuck with pain relief
So are they saying that you don't have endo and just evidence of adeno? What is the purpose of the MDT meeting as that would be to discuss your case when complex management/surgery is likely to be required after a diagnostic lap as would be the case with severe stages of endo. What does it say on the discharge note after your diagnostic lap? A thorough internal exam should be done at the time of a lap under anaesthesia.
The discharge note said evidence of Adenomyosis ? Endo. No one saw me after my op either which didn’t help. Ended up staying overnight because I was really faint/dizzy and asked a nurse that morning about what was seen etc and she never came back. I waited 11 weeks for my post-op appointment and was told that my case would be discussed at Endo MDT meeting and told I may have Endo/Adeno and MRI showed evidence of polycystic ovaries. But despite that, the correspondence from my consultant after that says “there is no gynaecological cause for the pain”
I am beyond confused about what I may or may not have and just feel like I am being shoved aside and not bothered with
That sounds good to me. I asked my consultant’s secretary a couple of weeks after the lap had been done if I could have the report but she just said that they don’t give it out x
My consultant was quite clear from the off that my surgery was solely diagnostic - he drained an endometrioma but the rest of my endo was left (it's still there now over 2 years later).
You could always put in a Subject Access Request to get access your medical records - you should be able to find out how to go about this via your NHS board.
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