I am hoping to get some advise regarding my care. I was diagnosed as having endometriosis last year in March and had a laparoscopy later that year in July. I have been under the care of a general gynae. Initially, my gynae wanted me to have the mirena coil which at the time, I was not keen on having considering I had never really been on any contraception and opted to try the pill instead.
I am on my 3rd type of hormonal pill as previously I have had continuous bleeding which I am starting to experience again with the one I am currently on. I’m considering having my care transferred over to a BSGE centre but wanted to hear from people who are currently under the care of one and the benefits of them. My main issue has been that I have not been told what stage of endo I have and I was due to see my gynae for a follow up end of the month but this appointment has been cancelled until next month. How often do you get reviewed at a specialist centre? If you have concerns before a review can you contact someone and how easy is it to get an appointment?
I apologise for the lengthy post but hoping to get some advice if this is the right path for me to take.
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Maxyy93
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If you can search bsge on here, a user called Lindle just explained the criteria. I'm sorry you are still suffering. Unfortunately you many not meet the criteria. You may do! But you'd need to be referred from your specialist. I'd advise accessing your surgery report and requesting a summary or review with them at least. The centres don't see people more often. You do have access to an endo nurse. Surgery can take a long time as they have to involve an MDT. It is only the most complex surgeries that usually occur under the Bsge teams. Some people can be referred if endo was previously resistant to treatment. However, it's not a quick or linear process. Do have a search on here for that post. Lindle knows what she is talking about!
Thank you so much for responding. I think the last time I checked the criteria for the centre I wanted to be referred to I would be suitable as I had cysts on my right ovary measuring over 8cm. I just wasn’t sure since I had the laparoscopy they drained the cyst so if I would still meet the criteria.
I don’t seem to be responding to treatment so I assume I do fall under the criteria looking at Lindle’s post.
I don’t necessarily want to see a consultant but I feel having access to at least an endo nurse would be so helpful because currently I keep going to my GP and have to keep repeating my problems as they don’t have much knowledge on endometriosis and keep referring me on and then my appointment got cancelled which is very frustrating.
The information you have given me is very helpful. I will start off by requesting my surgery report.
That's a starting point. You can request every document they have on you. I've done it. Didn't take long. Located the form on my hospitals website. Printed and signed it. Went to the hospital with ID and left with it all. I might have been lucky but it was easy for me. I hope you get some answers and support. I think most of us are the same going it alone, and only finding support online. It's nothing short of a travesty in my opinion. I educate my GP more than he has ever educated me. My husband probably knows more than most general gynaes about endo 😬
I have emailed my current gynae’s secretary so fingers crossed I hear back from them soon. I had my surgery at a different hospital to were I usually have my consultation so I’m hoping this won’t delay things.
It’s so true that my only source of support and information is this forum as I have found the whole process very slow and I seem not to be getting better. Not only am I having to educate my family as well but the different GPs hence I would like to be considered at a specialist centre.
Anyway fingers crossed. Thank you again for all your helpful tips and advise. It really means a lot in a journey that often feels lonely. X
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