Let me tell you about my life in the two years preceding my diagnosis of endometriosis. Overall it was a pretty terrifying time, because I was feeling SO ILL on a daily basis with an array of debilitating symptoms such as diarrhea, sickness, abdominal and chest pain, headaches, and extreme fatigue. I also gained two stones in weight as I felt too unwell to do much more than lie on the sofa when I wasn’t at work. Despite regular trips to see a range of specialists at my local hospital over the previous four years, I was no closer to finding out what was wrong with me than I had been at my first appointment. This time was also incredibly isolating, as without a clear ‘label’ for my symptoms I found them hard to address, and almost impossible to talk about with others. People are very dismissive (perhaps understandably) if you have to use the ”something is very wrong with me , but doctors don’t know what” explanation for your ongoing illnesses. I just gave up completely in the end, and hid how I was feeling from everyone around me. But looking back, I now realise how much the endometriosis was beating me, rendering me incapable of the smallest tasks and wrecking havoc on my personal and professional life. It’s a minor miracle that I kept going at all if I’m honest.
But getting a formal diagnosis has changed all of that, and I’ve been amazed at how it has spurred me on to start taking control of my health again as well as my life in general. Knowing what your dealing with just makes things so much more manageable. It’s been like I have this kick ass alter ego who isn’t scared to get things done. I like to call her ‘Endo Lady’ and she is not to be messed with 🙂 I’m not saying that I have regained control fully yet- I’m still a long way off,and that scared and sick girl is still around most days at the moment. But I have been taking some positive steps forwards instead of the usual strides backwards. Let me give you some examples of some of the things I’ve been doing in attempt to start feeling better:
- Exercise: I’ve been doing circuit training five days a week. Can you believe that? I’m still not sure I can. I would honestly never have thought it possible, but with the help of an incredible and supportive instructor who helps me to know my limits, it has been. And I’ve stuck to it- even when I’m exhausted, or hurting, or emotional (which is most of the time). Of everything I have tried so far, I think this has been the best thing, and it is helping me to feel stronger and more powerful everyday!
- Acupuncture: I’m still fairly skeptical about this, particularly as the evidence in its favor is mixed and it’s freakin’ expensive. However, I decided to give it a fair go, thinking that if nothing else it can be valuable ‘me time’. So once a week, I transform into a human pin cushion. I will report back in a few months with how I think it’s going.
- Counseling: There is SO MUCH ANGER inside of me: About my delayed diagnosis, about people constantly dismissing my pain over the years, about the impact of endometriosis on my career an friendships, and about the future. I know it’s there and I’m dealing with it, so that one day I won’t be angry anymore. I want my mental health back. This is mission self esteem.
- Research: If there is a piece of scientific research published on endometriosis in the last 10 years I have probably read it. Endo Lady is very aware that you have to know your enemy if you are to successfully defeat it.
- Seeking support at work: I faced my fears, and potential career suicide, by telling some senior people at work about my endometriosis and how unwell I have been. Contrary to my expectations the world did not end.
- Advocating for my own (better) healthcare: I’ve been super disappointed with the aftercare I have had post surgery for my endometriosis, mainly because there hasn’t been any. Basically, I was given my diagnosis and then just told to go home and deal with it. That was it- no support, no advice, no medication-nothing! Pre-diagnosis I would have just left things as they are, feeling too ill and frustrated to fight my corner. However, post-diagnosis I know I can’t sit back and accept shoddy care any more, and have actually managed to advocate for myself to both my hospital and GP in a way I didn’t think I was capable of.
I know these are small steps really that every woman with endometriosis takes on her journey to recovery (or at least manageability). But it is such an improvement to me just lying on the sofa crying all the time. And this is what makes me so annoyed about how long it takes for women to be diagnosed with endometriosis- all that suffering and damage to my life just seems so pointless and avoidable. Even though receiving a diagnosis is terrifying and devastating, it can also be massively liberating. I am so much healthier (mentally and physically) than I was just a few months ago. Ignorance was certainly not bliss for me, nor is it for the millions of other women in the UK and worldwide who suffer with this disease. While my consultants said they were trying to ‘protect me’ from the risks of surgery, and that’s why they had argued against me having a laparoscopy for so long, I am left wondering if they really had my best interests at heart on this one. I’m not sure you should ever try and shield people from the truth, whatever the risks may be.
I’d be interested to hear about how you cope with endometriosis, and what works for you. Your comments and suggestions are most welcome.