Between a rock and a hard place!

[Beejc]

I was diagnosed with endometriosis last March following a lap to remove my ovaries and tubes. Having experienced menopausal symptoms my GP put me on HRT to prevent them. Since that time my Endo symptoms are so much worse. I’ve seen 2 GP’s at my doctors surgery and neither will refer me to see anyone. The last GP has told me that she will only refer if I come off my HRT for 3-4 months and only then if my symptoms are not improved. So basically I either suffer dreadful menopausal symptoms including debilitating headaches or continue to have really bad Endo symptoms. Has anyone been in the same situation? Thanks

[Maxi72]

Hi

Sorry to hear what you’re going through. I haven’t been in your situation exactly but wanted to offer some advice. GPs rarely understand endo and I can’t believe that they are refusing to refer you. Given that your lap was only in March of last year, I’m surprised that you’ve been discharged already. ( I’m on follow ups still). It may be possible to contact your consultant’s secretary directly as you may have been discharged ‘with an open appointment’ which means you don’t need your GP to refer you. I would try this route. If you’re as lucky as me, your consultant may actually ring you back and give advice over the phone. Hope this helps.

Good luck.

[Beejc in reply to Maxi72]

Thank you for that. The consultant who did my lap was a gynae oncologist as it was thought I might have had ovarian cancer. Thankfully my pathology was normal and so he discharged me back to my own GP for any follow up. This is why I’m beholden to my own GP surgery 😟😟

[Hidden]

Your GP is in the wrong - I would make a formal complaint and ask to be referred to a centre on the bsge accredited list. Do you know if they excised all the endo when they removed your ovaries? If they left some behind the HRT may be causing it to still cycle. It also depends what type of HRT they put you on as some are more suitable than others.

[Beejc in reply to Hidden]

Thank you for your reply. My lap was to remove my ovaries and tubes as it was thought I may have ovarian cancer- thankfully that was not the case. The gynae oncologist diagnosed the Endo whilst he was ‘in there’ and told me I probably needed a referral to someone else after I’d recovered from my op. He didn’t excise any as far as I’m aware. The consultant discharged me back to my GP surgery as he only deals with ongoing cancer patients. So I’m stuck with my surgery dictating whether I’m referred elsewhere or not. I’m on Estelle Duet. They won’t put me on anything else- they’ve told me to get referred I need to be off HRT completely for 3-4 months. They basically want me to swap all of the Endo pain for dreadful menopausal symptoms which included the most awful migraines almost every day.

Can I ask what the bsge accredited list is???

[RicEndoUK in reply to Beejc]

Hi Beejc,

I'm sorry to hear your endometriosis has gotten worse and that you aren't getting referral. Is there another GP you can ask to see or the practice manager?

The BSGE is part of the Royal College for Obstetrics and Gynaecology (RCOG) and promotes the use of keyhole surgery for benign gynaecological conditions including endometriosis. The BSGE aims to improve standards treating women with gynaecological problems and provides a list of accredited Specialist Endometriosis Centres in the UK, who have substantial experience in treating complex cases of endometriosis.

The concept of the BSGE Endocentres is now well established. Each centre provides women with specialist care by providing access to multi-disciplinary specialists; specialist nurse, gynaecologists, colorectal surgeons and other professional clinical disciplines.

You can find a list of the endo centres here: bsge.org.uk/centre/

Hope this helps and I hope you manage to get the treatment you need.

Take care,

RicEndoUK

Volunteer Moderator

[Beejc in reply to RicEndoUK]

Thank you so much for your reply.

I’ve seen 2 GP’s at my surgery - one flatly refused to refer me and the other one is the one that said to stop my HRT.

I have already spoken with the practice manager but I’m going to speak to her again and discuss the information you have provided regarding the centres and go from there.

Many thanks