Hate this disease

Went for my follow up after another op my specialist said my inside are knackered there is nothing they can do for me as its growing back faster and faster I will never conceive naturally so now I'm starting Ivf as a single person which is gonna cost a small fortune I am in so much pain some times it is so unbearable all I do is cry the painkillers don't work anymore don't know what I would do without my heat pad

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  • Oh I'm so sorry to hear your news,

    Are you under a bsge specialist centr??

  • Honey - read my long post below. You're not at a specialist BSGE endo centre!!!

  • Hi lovely. This is really important!!

    The leeds centre for reproductive medicine is NOT on the list of BSGE endometriosis centres! I think it's really important that you check this out. I've just done some research for you. If you go onto the BSGE web site there's a link at the top of the page to their Specialist endo centres. These are the places where it recommends we're cared for. There's a map and a list of specialist Endo centres in the UK. Your hospital isn't one of them but there are several within an hour of Leeds (yeay!).

    Just in case - I also looked at the team at your current hospital to see if any of them work at one of the specialist endo centres as well (which would kind of let the off)- but they don't seem too. Unless my eyes are missing something I don't think they do. They're not even on the list of provisional centres that are trying to become specialist endo centres. They don't have the experience to deal with you in a way that a specialist endo centre will.

    I'm luckily now under a Specialist endometriosis centre an hour away from where I live. I feel so much happier because I know he's capable of doing things that other people wouldn't even try to do (confirmed by my local consultant) and has a multi function team around him who deal with endometriosis all the time and can work with him on my bladder/bowel etc.

    Initially I saw the specialist privately for £200 (I knew that I'd be referred to him eventually anyway on the NHS but my post op meeting with my local Obs and Gyne consultant took 5 months and I couldn't wait).

    What the specialist at the specialist endo centre explained to me (and then my own NHS hospital consultant explained to me too) was that he ONLY works with endometriosis. It takes up 90% of his time. Because of this he can do things in a way that most consultants can't. My own consultant is brilliant but her specialist are is early pregnancy - so she's expert in that, but doesn't have the same knowledge or skill with endo. I know from working with hospital consultants in my job that they all specialise. If you get one that specialises (properly specialises - not just "has an interest in") your condition you're going to get far far far better help. The problem is that many of them are too arrogant to admit that they're not specialists - which is why the BSGE endo centre list is important. It means we can check it out ourselves and ensure we're getting the right people treating us. I really don't think that you are.

    My NHS local OBS and GYN consultant said the same thing when I eventually went for my follow up. She does do work on endometriosis patients, but when it's bad she agreed it HAS to be done by a proper specialist who is dedicated to treating endometriosis, if we want the best treatment options and to have out operations done in a way that offers us the best results. I've now been put on the Specialists NHS list for my next op (a big one) to be treated at the specialist Endo centre and my own consultant is delighted because she knows she's just not capable of giving me the best treatment.

    Looking at your hospital - They are not endo specialists. You really need to be seen by a specialist ENDO centre otherwise you're not getting the specialised treatment you need for your condition.

    Please please research this and look at the BSGE website - on the top bar it says ENDO CENTRES. Click on that and it drops down with a map and a UK list. Find the one nearest to you and tell your consultants that you want referring. It's outrageous that you've been told there's nothing more that can be done and they haven't even referred you to a specialist centre.

    I'm so sorry but this has made me really angry for you. You must be in terrible pain and feeling absolutely hopeless. I'm so tired of us being messed about and you deserve far far better than this. Don't give up hope of getting this sorted out. If you get no where with your Consultant at your hospital and they won't refer you (I think they have to actually and should have done so by now!) then call one of the specialist centres and talk to them and ask for advice about how to get on their list.

    If that fails see one of the consultants at the specialist endo centre privately and talk to them and ask them to sort it out for you. My consultation cost £200 (I could barely afford it but it'll save me thousands of pounds in the long run because my op will be done more effectively and quicker so I won't miss so much time off work) but it saved me months of waiting. In my case my local consultant did have my best interest at heart but the waiting list to see her before she could refer me was too long, so going privately for the initial consultation meant that he could contact my GP and suggest a course of action which sped things up as my endo is really bad and needed addressing urgently.

    Do contact me if this is confusing. I'm on so many bloody meds at the moment, I'm not being as clear as usual, but like everyone here I want to help. Wishing you the very very very best of luck - Go get em girl!!! x

  • Thanks Hun I will defo check this out I am so sick of the pain and feeling ill all the time thank you so much for your reply really does mean a lot xxxxx

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