Hi ladies, I just wanted to share a little update from my endometriosis diagnosis journey. I had my meeting today with a lovely gynaecologist at Oldham hospital. He confirmed my MRI scan was showing signs however would need laparoscopy to confirm stages etc. He did mention they have found signs of lesions on my bowl and bladder which explains some of my situations! I am now on a waiting list and confirmed the minimum waiting time is 1 year, I will basically get a call 6 weeks before surgery to get everything ready.
hope this helps anybody in my region who is wondering on time periods. I am little nervous but I feel as though I no longer am being ignored which is a huge relief 🥰
Does anybody have any advice for the next 12 months?
x
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Nicky01-
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No I don't and we aren't actually allowed to discuss surgeons on here but I was just checking you are at the endo centre with having severe endo found. Will DM you the link to a group that is allowed to share feedback. x
Minimum of a year?! It’s just crazy isn’t it. I’m just at the start of my investigations. Waiting for gynaecologist and colorectal appointments to come through. I’ve been told if I don’t hear from them by the end of September I need to contact them. Did you have an ultrasound and then the MRI? What symptoms do you have?
Hope your get seen soon. I bet you feel so relieved/ validated with having a diagnosis though. All the best x
I know I couldn’t believe it too 😔 so I initially had an additional for my bladder in January and mentioned that I believe I have Endometriosis and I think it could be linked. Since then I had the internal examination with camera and more recently the MRI with contrast which I think was 2 months ago. I then received my appointment which I had today and finally booked in for laparoscopy as they have 3 set stages. Stage 1 is pain management so they will ask what meds you have taken, stags 2 is hormonal treatment and stage 3 is surgery. My symptoms are very heavy bleeding, pain around the front left side of stomach going round to my back and down my legs, painful intercourse, sickness, migraines, bladder issues and just generally feeling worn down.
I would definitely keep chasing as the waiting lists are just getting longer and for own peace of mind you just need reassurance.
Hope all goes well with you, if you ever want to chat I am happy to do so. All the best x
I'm in Manchester too, and agreed in April after MRI that I would need laraposcopy, and I had mine in July (on a weekend day, in a different hospital but with my surgeon). Hopefully your estimate is an over estimate too.
I hope so too. I have looked at private costs so was going to potentially look at going down that route. I had my MRI at Rochdale and was seen in Oldham yesterday. Consultant advised I wouldn’t be under Manchester hospital (my local) as they preform this surgery in Oldham Royal, Rochdale and a 3rd hospital which I can’t recall. Do you mind me asking which hospital you had the operation? I hope you are doing better now x
Glad you’re making progress and have a positive team on board. A year might feel like forever in the middle of all the rubbish but you’re right to think how can you help yourself beforehand part so you’re in the best place both physically and emotionally and part so you are in charge of the bits you can be. Being kind to yourself has to be at the top of the list though and not over pressuring yourself. Ensuring you think beyond the surgery and really allowing/ organising as much support / time post surgery I would put right up there. It can take a while.
Thank you for your reply. I am hoping it goes quick and it can help resolve the problems I have. Just felt a little deflated as I got my letter in the post and that actually saying 18-24 months 😔. Hoping sticks to his word and more towards 12 months but just taking each day at a time. Hope you are well x
Hey Nicky, just wondered how you are and what you're up to after 2 years? I've just got my date for another laparoscopy with Dr angus and wondered how you're getting on. x
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