In a weeks time I have a meeting with a number of people from the NHS to talk about what living with endometriosis is like, and what I’d potentially like to see improved about endometriosis care in my county.
Nothing may come of it, but it’s the first real chance I will have to influence some change in regards to how endometriosis is treated in my local area, who knows where it could lead to.
It got me thinking about how this isn’t just about my perspective, I want to adequately represent what it’s like to live with this disease. I don’t just want to talk about how it’s important issue in my area, but a national and international problem that some people in the medical profession are collectively underestimating.
If you could change one thing about how your endometriosis is treated, what would it be? Here are some ideas to get you started.
- Was the information you received up to and after your diagnosis appropriate?
- Have you received any long-term support or care?
- Do you routinely see someone (such as a pain management team or pain clinic) about your pain?
- Does your medication adequately help the pain?
- Have you been told about pain management and pacing?
- Do you feel endometriosis is taken seriously by the people who treat you?
- Have you ever been offered counselling or sexual therapy?
- Have you been given any physical information (such as leaflets, booklets, or website links) by the NHS or other health service?
- Were you discharged from your consultant after your laparoscopies?
- How long did it take for your endometriosis to be diagnosed? Are you still waiting?
- Did you know what endometriosis was before you were diagnosed?
- Was your pain ever played down when you sought help?
Please share your story and send this to anyone you feel would want to raise some issues.
Brilliant! Great to see someone with the disease being involved in the development if care services.
I was never given a follow up after my lap, I begged for referral to specialist and 6 months after my lap I finally got some answers. I’ve never had sexual counselling, pain management or any other services other than gynae surgery.
Before I was diagnosed I wasn’t given any scans or help at all, despite numorous gp and a&e visits.
Thank you so much for your insight, I hope to be able to read some of what you’ve said at my meeting (I will mention no names).