Sick of waiting!!

I was diagnosed with stage 4 recto vaginal endo last October following investigative laparoscopy. Surgeon told me it was too advanced for him to treat there and then and I would need further surgery with a specialist gynaecologist. Had my appointment with the specialist at the start of feb and he explained that my bowel had adhesions on it (depth not known) so I would need both him and a bowel surgeon present for my next op. It's now been more than 5 months and still no date. Feeling exasperated after checking the mail for the past 150+ days! Has anyone else had/having a similar experience? Thanks x

7 Replies

  • Yes

    Hi there it seems it's something you have to wait for they gave to tally both gaeni and bowel surgeons lists exhausting I know just have to wait I suppose

    Take care

  • Hi - there is usually a wait in specialist centres. Can I check that your surgery will be in a centre as recommended by the NHS contract for severe endo where the bowel surgeon will automatically be involved. Click on my name and look at my post on finding a specialist if you are not sure. The centres are at the link to the BSGE list.

  • Hi, I had to wait quite a long time also for a surgery date and had a date cancelled without anyone informing me, I literally turned up to the hospital the day before for my pre assessment and was told surgery has been cancelled, this was very frustrating and pro longed the wait even more.

    My case was very complex though and needed three teams, gynaecology, urology and colorectal. Looking back on it I'm so glad that this was arranged and everyone was there for the one surgery. It's in your interest that they do as much as they can in the one operation and that everyone that needs to be there is present. It's frustrating waiting when you want to get on with things and move forward in life. But there's not too much you can do and once the surgery is over this will be a distant memory.

    If your really anxious then put in a call to the admissions department to get an update or get the number of your gynaecologist's secretary and give them a call to see if you can get a update. This is what I used to do.

    The likelihood is that if your case like mine is advanced and complex the specialists will be discussing it behind the scenes in their multidisciplinary meetings or via email so I'm sure you haven't been forgotten.

    With endometriosis surgery you really do need specialists with experience and confidence to do the specialist surgery we require and with not enough surgeons in this position it can take a while to get a surgery date.

    All the best xx

  • Also if you haven't already then it is worth checking that your surgeons will be doing excision surgery as this is the best way to remove endo.

  • Hi I have exactly the same as you. I have been waiting since January now have my date 28th August.

    My centre only do this once a month and need both surgeons. But guess it is a long wait. It will come, just call the admissions team and they will tell you where you are on the list 💗 take care. Please private message me following my op I'm happy to share my experience with you

  • Im waiting also for joint op with gynae and bowel specialist. I phoned admissions today and they said waiting list is 26 weeks, although I was hospitalised last week for 4 days with unbearable pain so they are trying to bump me up the list. Hope you get your op soon as I know how you feel, its like you haven't got a life until its done but im sure it will be worth it in the end x

  • Yes!! On the plus side you're in the right hands and they are planning your surgery meticulously with specialist surgeons, which some women have to fight for for years!! On the minus side, co ordinating more than one surgeon's diary is a nightmare - I was lucky enough to be treated privately and it still took about 3 months to co ordinate.

    My best advice is ring their secretaries, be awfully polite and in pain and keep calling until they give you a date.

    It will be worth it!! I'm 3 months post op now and I feel like a new woman! Good luck Hun xx

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