My GP phoned me unexpectedly last week, messing with the shredded nerves of my inner hypochondriac considerably in the process- ”That’s it I’m dying aren’t I? I knew it! Just tell me quickly to get it over with! Oh. My. God!”
It turns out her news was actually rather positive, so I thought it might be uplifting to tell you guys about it here, rather than moaning about stuff. We have to share the winning moments when we have a disease that makes them all too infrequent right? Our conversation went something like this:
GP: You know we are a training practice?
GP: Well we are doing some gynecology work with our trainee GPs at the moment, and so I was wondering if you would like to come in and talk to them a bit about endometriosis and your experiences of symptoms and treatments?
Me: Hell yes I’d like to. I can’t think of anything I’d like to do more in the entire world now I think of it.
That day was today, and it was totally awesome! I had time to describe my history and the treatments I have experienced in detail (you can read about my journey with endometriosis here and here if interested). The trainees expressed more than a little surprise/ horror at my story and how long it took me to obtain answers when living with such pain and exhaustion. It almost felt weird to be sat in front of doctors describing all the symptoms I’ve had and being believed after so many years of having the complete opposite experience!
I was also able to cover the main points that I was hoping to get across, that:
- It takes 7 years on average to be diagnosed with endometriosis- which is clearly far too long, exacerbating problems for both patients and doctors in the long-term.
- Women with endometriosis should be afforded the opportunity to be referred to a BSGE endometriosis center, and have access to excision surgery if necessary.
- Endometriosis is a full body disease which has been documented in every organ expect the spleen. It can cause symptoms from diarrhea and bladder to fatigue headaches, and not just a disorder of painful periods.
- Being diagnosed with endometriosis can be tough psychologically as well as physically, so it can be helpful when doctors are mindful of this and inform patients of services which may be useful (e.g. IAPT, Endometriosis UK, pain management clinics, the Pain Toolkit etc).
The four trainees seemed to be really interested and asked lots of questions. Fifteen years of chronic illness and multiple doctors appointments have defiantly made me less shy about my body I noticed, as I sat there comfortably describing my sex life, periods, and bowel movements without wincing at all. It was also really cathartic and positive for me to be talking about my illness in a way which is positive and can make an impact on the healthcare that other women and girls may receive.
Training new doctors to have a competent awareness of endometriosis is clearly crucial for breaking the cycle of misery and failure surrounding this illness, and for helping women to access timely and appropriate care. I’m thrilled my GP surgery are being proactive in this regard and that I was invited to help.
The world has a teensy bit more endometriosis awareness in it now, and that can only be a good thing for all of us! 🙂
My GP and I discussed keeping up these sessions with new trainees, and she agreed to let me place posters for Endometriosis UK in the patient waiting area. Let me know if you’ve been up to any cool awareness raising activities in your own communities and/or online. Always looking to be encouraged and inspired by all you strong endo warriors and spoonies out there!
Love as always,