I have had my MRI scan for suspected endometriosis in March 2021. I am now waiting to see a pelvic specialist and consultant. I don’t know what my scan picked up as I am still awaiting an appointment. Do you know how long these things take?
I’m in constant pain.
Hello! I was just recently in the same boat as you. I got a pelvic MRI scan in September 2020 but (not to sound pessimistic!) didn’t get my results until Feb ‘21. I was under a referral to see an endo specialist of my choice during those 5 months and I kept calling my gynaecologist’s secretary to chase up my results (coincidentally, the endo specialist I wanted to see had the same secretary). At one point, in October, I was told my gynaecologist actually had the results and would contact me within the next week but she never did!
Anyways, to cut to the end: in March, I got my results in the post, typed up, and the gynaecologist had typed it out like a day or two before I had received it (the typed up date was on the letter) which really annoyed me too because I was told she had them months ago etc🙄 So they actually found “plaque” on my uterus which is suspected to be endo. I still hadn’t heard about my referral to a specialist at this point either.
So in April, because I was suffering so terribly (I’ve been living with chronic pain since Sept 2019) and am only getting worse as the months go by, I decided to give in to try birth control to see if it’d help (it hasn’t in the past) and I contacted my GP. She asked me what the current situation was with the gynaecology care so I told her how I hadn’t heard about my referral and she was shocked and asked if I wanted her to contact them and give them a poke, so I was like yep🥲 lo and behold, an hour or two after my appointment with the doctor, I get an electronic letter with an appointment to have a consultation with my endo specialist for the month later (May)!
I’m now on the waiting list for surgery and I got to see my MRI scan in the appointment and saw where the (highly suspected) endo has grown and obviously showed up on the scan.
I know it sounds like it’s never ending, especially since you’re suffering constantly, but I think it really is just a case of having to keep bugging the right people to get heard and seen. Absolutely horrible we have to because we’ve already been left to deal with suspected endo😩 the healthcare pathway for endometriosis care was shocking pre-COVID and I think it’s just become even worse after it all started.
Sorry for the long reply also! I know it will be difficult to not feel so left in the dark and alone but please know you’re not alone😞 it might be worth you contacting a GP to see if they can get a referral or at least your results expedited! If you ever need someone to talk to or even ask me anything else, please feel free to drop me a message😊
Also just wanna add, waiting to hear about my results really had a mental toll on me! Being left in the dark just made it feel like the scan didn’t pick anything up but then I kept telling myself no scan on this planet can rule endometriosis OUT. So try and keep strong and just remember that if your MRI shows “nothing”, that doesn't mean you don’t have endometriosis☺️
Thank you so much for your reply. It’s really gave me the hope I need to just keep fighting to get seen and heard. Thank you for this!
Consultant's secretaries are your best bet - my daughter's has been very good at chasing appointments and reports. Her MRI was clear, but the gynaecologist has agreed to keep her on the books and to see her every few months to see how she progresses.
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