How do I get a referral?
How do I get a referral to a gynaecologist?
Although endometriosis is not a menstrual disease, a proven path to diagnosis is by seeing a gynaecologist - a doctor who specialises in female pelvic health.
Make an appointment with your GP first. If your GP is refusing to refer you, ask them to clearly state in your medical records that they refused to refer you. You may find that they change their mind! If your GP is still being difficult, you may find it better to change GPs. Some patients report that male GPs are more understanding, others say that female GPs are more understanding. Ultimately a GP should truly sympathise and be proactive in helping you. Make them aware that endometriosis has been named as one of the top 20 most painful medical conditions to have by the NHS.
Alternatively, you can go directly to a gynaecologist via a private appointment, which you will pay for yourself or your health insurance will cover. You can then ask to be transferred to their NHS list if you wish, if they run both private and NHS practices.
Be aware that there are currently no consultants in Northern Ireland performing excision surgery, no matter what you've been told. Many patients have been told they received excision surgery only to receive their hospital notes which say ablation was used. Ablation is a damaging and inappropriate method of surgery for endometriosis.
Is it ok to get a second, or even a third opinion?
Of course! Endometriosis is a complex, body-wide disease so it's vital to be seen by an experienced specialist in a timely manner.
It's important to look for a consultant who's not motivated by "big Pharma" fees but who genuinely wants to help you, even if you have severe or complex endo - and who, if they feel they can't help you, don't hesitate to refer you to a fellow endo expert who can. You can look for surgeons in Nancy's Nook Facebook group or check out the Resources page.
How do I make a complaint about my GP/Consultant/the hospital I was treated at?
You can raise the issue informally with your GP or consultant first of all. You may even have an endo nurse you can speak with. If your doctor or consultant is unapproachable, you could contact the Patient Client Council for assistance.
How do I request my GP/hospital notes?
You can simply send a GDPR request. There is some good guidance here. It's best to send it in writing (a letter in the post), rather than email.
What are the waiting times in Northern Ireland?
The All Party Parliamentary Group Inquiry Report (November 2020) found that it takes 8.5 years on average for a woman in Northern Ireland to be diagnosed with endometriosis - remember, this is not a rare disease - it affects 1 in 10 women!
For waiting times to see a consultant gynaecologist in each Trust, you can follow this link.
In the U.K., clinical guidelines were developed by NICE to assist health care practitioners in their management of patients with endometriosis.
To view condensed infographics on the NICE guidelines (2017) click here