Newly diagnosed with Endo

So today I had an appointment with a consultant gynaecologist after 3 years of begging my GP to do something about the pain I've been having. I must say she was absolutely lovely and made me feel so at ease. She did an internal examination and told me she could feel what she believes is endometriosis. She had referred me to an endometriosis specialist to discuss my options and to have a laparoscopy done by her rather than this consultant performing it. So I'm now a bit worried, firstly because I didn't know you could 'feel' Endo - does this mean I have a lot of it and secondly the reason behind why I'm being referred to a specialist because she feels it more appropriate for her to do it rather than them doing it. Has anyone had this before? My head is a whirlwind of worry

10 Replies

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  • Hi Jodi, it normally means they can feel nodules. Having surgery with a specialist means you have less chance of it coming back or being missed. My advise would be to make sure you will be having excision and not ablation. With excision they cut the endo out from the root whereas with ablation they just burn the top layer off so it will just grow back again. Wishing you good luck.

  • Thank you for your reply. I'm 24 and I really want children - will the type of treatment I have affect this?

  • If you have excision surgery it should improve your chances of having children.

  • Hi - you seem to have been treated exactly how a gynaecologist should treat you but this is unfortunately not often the case. Yes, she will have felt a nodule which is a particular type of endo that is usually in the space between the vagina and bowel and is in the form of a hard lump so this is what she has felt. It needs to be removed by a skilled surgeon in an endo centre. You may well have endo in your pelvis too so they should remove this too. I should check that the person you are being referred to is on this list of specialist centres:

    bsge.org.uk/ec-BSGE-accredi...

    x

  • When she pressed it became very painful in a particular area. She told me the consultant specialised in oncology which is why a referral would be more appropriate. I've looked on that list and the hospital I am currently been treated at is not on there. I wish I had asked more questions while I was there but I was just trying to take it all in. I was offered to be put into the menopause but at the age of 24 this seems very dramatic?

    Reply

  • Hi Jodie - it seems I may have judged the current consultant a little too hastily. It could be that a specialist endo surgeon has an interest in oncolgy too but the critical issue is that the surgeon doing this surgery is named on the list above as they need to have done advanced surgical training specifically for the form of endo you have. Where in the UK are you?

  • That makes more sense then. I wish I'd asked more questions but I think I was just trying to take it all in. I'm writing all my questions down for my next appointment. I just feel so clueless, I'm in the North Yorkshire area. I can't see anything on the website I can only see Leeds and Wakefield on the list

  • You can see anyone you like anywhere in the country and you may have to travel a little way but this will be essential for you. Click on my name and read my post on how to find an endo specialist centre. Look at all the links and when you go next take copies of the NHS England contract and the BSGE list of centres with you. Nodules between the vagina and bowel come under the definition 'rectovaginal endo' on the specification in the contract that must be dealt with in a centre. It really does beggar belief why gynaecologists don't know this and it does sound as if your consultant really does want the best for you. Leave the copies with her so that she knows this for other patients. x

  • My only concern with that would be travelling for surgery and having to sit in a car for a long journey home following the procedure. I will have a look at your page. In clueless with what I'm actually looking at, all these terms sounds foreign to me. I'm hoping my next appointment with the specialist will explain more. Thank you gor your help x

  • I'll have a look now, thanks so much

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