In 2018 I previously had laparoscopic surgery to remove confirmed endo; however, it seems to have come back with a vengeance. I first asked to be referred back to gyno in July. Since then I have been passed from pillar to post and my symptoms have only got worse.
I am currently in a situation where I have MRI results confirming an army of cysts have taken residence in my body. Some of these are 6cm+ and one of my ovaries is stuck to the side wall. The scan showed the endo to be deep infiltrating not just in the uterus but my bowl too.
I have just been referred to Stepping Hill hospital for the specialist centre there but I haven't heard anything from the referral yet.
Has anyone been through this process recently? No one seems to be able to tell me any waiting times and the pain is getting to the point where I cannot function. I don't remember it being this hard to get anywhere last time, I feel so frustrated with the system
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Squidge511
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My MRI results were confirmed last week (also DIE involving my bowel) after 7 years of being told there is nothing wrong.
My consultant said I had an option of three specialist centres but stepping hill had stopped accepting their referrals due to volume they have. I don’t want to add to your worry, but it’s worth checking with Stepping Hill to make sure they have received the referral and will be actioning it.
Im in exactly the same boat, waiting for confirmation from Royal Oldham, (I’ve called twice today 😅) it’s infuriating having to micro manage every aspect of your appointments/getting a diagnosis and treatment but if you don’t, my experience is you end up bottom of the pile/forgotten. Might just be my lack of trust in the NHS at this point though!
I have friends who have been previously gone through this and getting a diagnosis/treatment was nothing like it is now. Not sure if they’re still blaming Covid but the waiting is outrageous!
Oh my goodness 🤦🏽♀️ I was referred a few weeks ago but I’ve been told I will hear back by March 1st. The referral is active on my NHS app. It seems there are blocks at every turn!
I hope it all works out for you as well, hopefully these struggles will just be a memory soon !
Hi Tango! I'm also at the same one and I've had the same experience with nothing on my nhs app so that probably explains it! I was waiting Oct - Feb for a specialist and now finally on a surgery waiting list which is 40 weeks
Is the wait with Royal Oldham 40 weeks? Or Stepping Hill?
It’s making me so angry/depressed, it takes on average eight years for a diagnosis and even when they get there there’s no urgency, it’s devastating leaving people to live like this. 😔😔😔
Hello 👋 I had an MRI in October and got referred then to a specialist through a letter. I tried ringing the specialist after a few months to see when I'd get an appointment but I never got through. I finally got a call about two weeks ago. So I was waiting October - February and I'm now on a waiting list for surgery which is 40 weeks 😭
That is so upsetting! It boggles my mind how those wait times are acceptable. Especially if the endo is so extensive that we are being referred to specialist centres. I know they’re all working at maximum capacity but what strain they must be under 😔 if you don’t mind me asking, how are they managing you until you get to the surgery? Every time I have a period now it is writing me off for 2 weeks + .
Are you taking any contraception? I was told that whilst I wait I must stop ovulation to try and slow any more endo growth. Extremely aggravating to be using a contraceptive when I can’t even have sex due to the severe pain caused by my fixed uterus 🤦🏻♀️
They put me on progesterone only, which made me extremely depressed and continuously bleed. So now I’m on microgynon, back to back with no breaks this has stopped the periods, so the period pain has gone but not the daily/flare ups.
Also a lot of cocodamol. Which is slowly starting to not be strong enough. 🙈 I’m also permanently attached to my hot water bottle.
It’s honestly unacceptable we’re having to wait so long. I feel like a 90 year old, at 33.
Sorry to hear you’re having such a rubbish time. I was referred to the general gynae list and it was so long that my GP put me on an emergency endo list. When I called them, they said that even though this was the emergency list, there was a 12 month wait for an initial appointment and then obviously a wait for any treatment after that. I panicked as I’m 33 and want a family so I cracked out the credit card and went private…
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