I’m a right in asking for BSGE referral?

[Gothchic]

I’ve been trying to research if nodules on utero sacral ligaments is considered deep infuriating endometriosis and if so is it right that I can ask to be referred to a BSGE centre? When I had my laparoscopy by a general gynaecologist in October I was told the nodule was on my right US ligament and she couldn’t remove it so I had to go on the pill for three months then if the pain is no better I can have it removed by someone else, I found the information she gave me was very vague and I haven’t had any contact with the hospital since so I’m quite confused. I have previously been on the mini pill and this did nothing to help my pain so really I want the nodule removed so I spoke to my GP who agreed to refer me to my nearest BSGE centre but I’m concerned about if I have done the right thing, did the gynaecologist who did my laparoscopy mean a different gynaecologist at my local hospital could remove it or do I need a specialist? do BSGE centres only treat endometriosis connected to the bowel and bladder? I don’t know if the endometriosis is affecting my bowels or bladder although I do get bowel movement problems but I guess this could be completely unconnected, my GP didn’t seem to know much either, I don’t want to waste the time of specialist consultants and obviously I know the wait to even speak to them will be long. I just thought I would ask on here because many of you have a lot of knowledge and personal experience and maybe could help me with my confusion. Xxx

[SoJo_EndoUK Moderator Endometriosis UK]

Hi Gothchic,

Firstly, I’m sorry to hear your having such a difficult time. Regarding the bowel and bladder, yes there can be endometriosis of the bladder and (or) bowel, I have attached some information below from Endo UK which I hope you find helpful. Unfortunately, we are unable to recommend specific specialists, surgeons or treatment centres for legal reasons. Additionally, we are also aware that one person's experience and needs of a consultant can hugely differ from another. We recommend seeking out institutions that have been peer-reviewed by other medical professionals and deemed centres of excellence. We feel that a good place to start looking for this information is through the British Society for Gynaecological Endoscopy (BSGE) website. The BSGE accredited specialist endometriosis centres have consultants who are specialists in the field of endometriosis. The centres are reviewed annually. The other useful resource is keeping a pain and symptoms diary (link below to Endo UK template) so that when you do get to see the consultant, you have this information for them. It is also worth exploring what treatment options are available so you can discuss what might work for you. I appreciate it is frustrating waiting for an appointment, we are here for support in the meantime.

endometriosis-uk.org/endome...

endometriosis-uk.org/endome...

endometriosis-uk.org/sites/...

bsge.org.uk/#

[Gothchic in reply to SoJo_EndoUK]

Thank you so much for your reply, I do really appreciate the support and advice I get through this group it’s a great place to talk to people that understand. Thank you for the links I will have a look at them xx

[Purple_Badgers]

Hiya, according to NHS England, endo on the uterosacral ligaments is classed as part of recto-vaginal endo, which itself is classed as severe endo, which means the patient should be seen at a BSGE accredited centre. Hope this helps.

[Purple_Badgers in reply to Purple_Badgers]

And forgot to say - BSGE centres are for tertiary care, which for endo means severe, deep infiltrating or recurring/resistant to treatment. This can be endo in any part of the body. I would mention your bowel symptoms and get this checked out ASAP. You may have to start with your gp and have other bowel issues ruled out before they will link it to endo, but I would make sure everyone is made aware so that they bear it in mind during any scans/treatment/surgery you have. Best of luck xxx

[Gothchic in reply to Purple_Badgers]

Hi purple Badgers, Thank you for the reply and information, I feel I ask a lot of questions on here but since my symptoms started a few years ago I have felt so alone and when I got my diagnosis in October I really thought I would start to get a bit of support from medical professionals, The GP and even the two gynaecologists I have seen don’t seem to be able to answer my questions or give me a proper course of action or care. I appreciate that there is many people in a lot a worse situation then me but just a little bit of information and answered questions would of been good, reading other posts though I see that medical professionals lack of understanding of endometriosis seems to be quite common.

I’m hoping seeing a specialist will help me to move forward in getting the right treatment and a better quality of life, sometimes I feel so low and helpless as I’m sure you understand.

My GP has sent a referral to my closest BSGE centre but only because I told her that I think that’s what I need so hopefully I’m doing the right thing. I will be sure to mention my bowels symptoms.

I hope all is well with you and you are managing ok, this disease is so cruel.

Take care xx