Still not on Lap waiting list, could a MRI (private or NHS) help confirm endometriosis?

[MoominBabe92]

Hi everyone,

I was told nearly a year ago after 10+ years of advocating for a lap that I would finally be put on the waiting list. I have just found out the gynaecologist did not put me on it.

I have another appointment with her at the end of the month to discuss this devastating news, should I pressure her for an MRI / explore private options to do this? Has anyone has success with diagnosis this way? Are there any endo specific MRI options I should be aware of? I'm 99.9% sure I have endo but internal ultrasounds come back clear.

Thank you, S x

[atealdeer]

This is awful for you, I am sorry. Is this one of those horrible situations where someone didn't push a button so you didn't get added to a waiting list (this has happened to me twice now, two unrelated referrals, putting me back months) or did they just lie to you? Did you sign the consent form a year ago?

I would push for an MRI, especially if she really won't list you for a lap. If she won't order an MRI on the NHS, you could ask her to refer you for a private one, if you can afford to pay for one. Or ask your GP to write you a private referral for a pelvic MRI looking for signs of endometriosis (a gynae registrar told me this wording would be right for the referral). I have just had a lap by a general gynae which did diagnose endometriosis but I think there is more going on than was seen, so want an MRI and will be going this route if my gynae won't refer me on the NHS. But it's something I really wish I'd done a year ago, before I started a treatment that helps but also apparently masks endo.

It seems that MRIs are used quite often after laps to check the extent, but I had been warned that it totally depends on the extent of your endo, so it's possible for it to not show on MRI but be seen in a lap. It's tough to decide what to do, but if you have the money (or insurance) to have a scan privately then I think it's worth a shot.

Also, all my ultrasounds had been clear except for something called the sliding sign, which is a bit of a giveaway of endo, but endo was found during the lap. There are experts who can diagnose using ultrasound but you're unlikely to come across them without seeking them out. But someone might come and advise you on that option. No t having any evidence of it on ultrasound does not rule out endo at all. They usually only pick up endometriomas that way, apparently. Sorry I can't be more helpful. I hope someone with more knowledge or direct experience comes along soon!

[MoominBabe92 in reply to atealdeer]

Thank you SO much for your support and detailed reply, I am blown away by the community and their willingness to help eachother when the medical community fails us.

I am also heartbroken to hear you have been through similar issues regarding failed refferals and a difficult journey to diagnosis and treatment. I hope we all have more success, less pain and are treated with more compassion in 2023! Its so upsetting to see so many patients struggling and facing the same unnecessary battles ONTOP of the pain of endo.

No consent form! I wasnt aware this was required, this is very useful info when advocating for yourself and learning how the system works feels like a full time job ontoo of the mental aspects of battling endo! I suspect I was lied to as I was led to believe it was happening over the phone. The gynaecologist in question is over 20 miles away and I have only ever had telephone consultations due to the distance and the fact I cannot drive bit was reffered there.

I also want my IUD removed as its causing havoc and she even suggested that could happen during the lap due to my trauma and pain from the fitting... I am no closer to a lap or a iud removal! Scream

I am also aware no responsibility has or will be taken and I am being told an entirely different story now but I can maybe use this huge setback to purse MRI... potentially! The wait lists seem to be shorter for MRIs too

Thank you so much for all this info I feel a little more prepared and in control knowing I can argue for an MRI and my endo may show up there and save some time for us all...despite what she may say to me to put me off, its definitely worth it when im no closer to a lap anytime soon <3

[atealdeer in reply to MoominBabe92]

Thank you. I hope we all do better this year.

Is the consultation at the end of the month finally in person? I also was waiting for an in person appointment for over a year (COVID) and that's when I was given all the information about the procedure and signed the consent forms and was put on the surgery waiting list. Then I waited nearly a year having got cancellation. If you do get put on the list and you're in a position to take time off at short notice, tell them that, because you will be called about cancellations as not everyone can take them.

I am sorry you have been waiting for your IUD removal thinking it was getting closer because of what the gynae promised. If it helps at all, my first insertion was hellish, and I had to have that one removed after a month because it had slightly dislodged but the removal by a doctor was so easy, so please don't be scared if you have to have it removed the usual way. And if you go to a sexual health clinic then they're very experienced at dealing with them.

I'm glad you feel able to and intend to advocate for yourself re: MRI. I am actually really suffering since my op and really do think I need an MRI, so I'm going to push for it at my next appointment. I wish you the best of luck with it. And you must come back to the forum if you have more questions. There are some incredibly experienced and helpful people on here!

[Starry1977]

hi , I’ve been going private but luckily my employers cover it. I had an mri after a lap to check the extent of bowel endo. My lap showed stage 4 with frozen pelvis, with endo n bladder and appendix and my ovaries were all stuck. My ultrasound only showed a cyst . Luckily this was 4cm so I was booked for removal otherwise I’m not sure that would’ve happened as my endo symptoms aren’t actually too severe ( compared to others) . The mri confirmed more endo in POD near rectum, another ovarian cyst and extensive scarring, so they do show more. The mri cost was about £480 that included dye and buscopan. Not sure whether you’d also need a consultantion on top which is about £200. Everything is so quick with private