Endometriosis specialist nurse

Just a quick quick question ,if people have been treated in an acredited endo centre with a specialist nurse ,how much contact have you had with them .

I have had none so far having had major surgery for endo recently I thought I may have a follow up phonecall as there we're a couple of things I wanted to ask.

I've emailed her but nothing .

What should I expect if anything

12 Replies

  • The specialist nurse I have been dealing with since my lap has been really helpful and supportive. I have had a follow up phone call and then a couple of phone calls since to check on how I am doing. My first call was a week after my op. X

  • As I thought Thankyou glad she is supporting you could have with a bit post op as well oh well ....

  • I got planned phone calls every 6 months after my op. But I was given her no.and told to ring if any problems. I have had contact with her in between and she has been very helpful.

  • I didn't have my first lap with an endo accredited hospital. And I had no contact at all with anyone until my follow up appointment. But my second lap will be with an accredited hospital, and I email my nurse when ever I need advice. And she will phone me to discuss how my treatment is progressing, and she also emails me because she knows it isn't always easy for me to take calls when I am at work.

    I've honestly been amazed with how much contact I've had with my nurse. I wish we could mention names and hospitals on here!

    Hope you hear back from your nurse soon. Could you try phoning her?

  • Thankyou for you replies I have also tried phoning but no phonecall back either .

    It's not the end of the world I'm sure I can wait for my appointment ,just to have a bit of support when I came home from endo nurse would have really appreciated surgery was pretty major felt a bit lost to begin with .Thanks again

  • Hi mablesky, I have had v positive experiences with the specialist nurse at the previous and at the current endo centre I am with. Would it be worth emailing or calling the consultant's secretary (and email would be a better record) and saying you have not been able to get in touch with the nurse...it is one of the bsge requirements and they should get back to you.

  • I may do this I really don't want to cause any trouble but I thought

    The good thing about endo centres was that try had this point of call for us

    But to be honest I have had very little dealings with one apart from them wanting to fill in questionnaires !!for their data collection ....moan over with

  • I had major surgery at an endometriosis specialist hospital by a well known consultant in April. Since this operation I have been left in really awful pain. At my follow up appointment he was really dismissive towards me and told me to start prostap and return in 4 months. The prostap made me feel so unwell with diarrohea, pain for the first ten days although I can help with the hot flushes.My GP is not that supportive. I had no idea until I joined this site that the hospital where I had my surgery had endometriosis nurses and pain nurses who could support me. Thank you for telling us about this. How to I know get to see these people as I really can not cope anymore!!

  • Well according to other peoples experience of endo specialist nurses you should have been given a contact number and email adress at start of treatment / surgery .if not can you contact the consultants secretary to give you these details

    I'm sorry you've been left in so much pain and that also you are not getting the support so clearly needed .

    If you go onto BSGE endometriosis centres list your named endo nurse should be listed where your hospital is named

    If you want to private message me I can help you do this if I wasn't very clear!!

  • I was phoned a week after surgery and then have left phone msgs at other times. I know that the nurse only has part time hours as part of the endo centre and therefore it's sometimes taken her a couple of days to get back to me. I would say she responds quicker to phone calls than emails. Hope you manage to get in touch with her. And feel free to msg me if you want to chat about anything, would love to hear how you're getting on.

  • I'm at an endo centre, diagnosed with Stage III Deeply Infiltrating Endometriosis in June and going in for second op next month but nothing has been mentioned about an endo nurse.

    What do they do?

  • My understanding was they are a link between you and the consultant they also see you in some clinic appointments as well

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