Hindsight is an odd thing, but really most of us only understand something properly once we’ve experienced it. It’s something I’ve established as a blessing as much as a curse, because when you know better you do better ….but you also wish you knew better in the first instance.
As I advocate more and more across my social media platforms about Endometriosis, I’m politely reminded of my own journey – the paths that should have never been presented as viable options, and a whole host of knowledge around my illness. Yet this has only been established through getting a diagnosis, I have fallen time and time again at the hands of uneducated medical professions, who I not only trusted – but paid a lot of money for them to ‘make me better’. I now know they can’t and could not do that, and therefore I would react differently now to situations than I previously did. There is no cure for endometriosis, currently.
Here is what I wish I knew prior to my diagnosis and why:-
- Trust your intuition, you know your body better than anyone else. This is where I’ve fallen down in the past, I’ve allowed other people to dictate and lessen my pain, my illness and my existence. If you suspect something, require investigation – push and push and push until you are heard. In retrospect my intuition always was that I had Endo.
- Do your research. Research, education, knowledge and awareness are key activities that are required to allow you to make informed decisions. I began researching only after my diagnosis, and that caused a whole host of issues. Firstly, in restrospect two of my three laparoscopies should not have happened with general gynaecologists (but instead Endometriosis Specialists). Secondly, the “treatments” carried out in some of my surgeries should not have happened. Thirdly, if I had done my research in the first instance I may not have needed as many surgeries.
- Know what options are available. After fighting a medical system for so long – I just wanted surgery, I wanted someone to confirm I wasn’t going mad and take the pain away. I didn’t even know there were Specialists for endometriosis. This failed me twice. I was also backed into a corner and given limited options (hysterectomy, early menopause or hormone treatments) and told I had to pick one – I chose to practice following my intuition on this one and chose none of those options and sought a second opinion. Everyone is different, but no one should ever be made to feel backed into a corner.
- Get a second opinion. If you do get backed into a corner, walk away from the situation – you do not have to make any rash decisions there and then. Go away, reflect, research and if you’re unhappy or feel that there is another direction your treatment should be heading in get some advice from another qualified specialist. I could have taken the guidance of a general gynechologist and had a hysterectomy when a second opinion instead saw me keeping all of my organs and having excision surgery performed. (You don’t always need a second opinion, if your research matches your initial experience).
- Keep a journal of your pain/symptoms. Easier said than done and I’ll hold my hands up to this one. When you’re in pain constantly its hard to keep track, but its good to walk into appointments or consultations prepared. The chances are the doctor will ask you to go away and do it anyway, so if you do it before hand – its less waiting time, and gives the doctor real life examples to discuss there and then. It will also help you understand any patterns with your pain. Food logs are another biggie, as endometriosis is linked with inflammation – food can be a trigger for all sorts (bloating, nausea, fatigue, lack of energy or concentration)- it may be with tracking any foods that for example trigger endo belly.
- Be your own advocate. If you have endometriosis chances are you’ve had an uphill battle to receive a diagnosis, or you’re still on that hill (keep going my lovelies). Break the taboo, share your journey, find other people who can relate to you, don’t suffer in silence. A GP once told me to be my own advocate, having listened to me discuss endometriosis with him. Having done a lot of research I’m able to have informed discussions with medical professionals, understanding and coming armed with all of the pros and cons associated with treatments, surgeries and advice. To some doctors or people I can come across as rude, but I’m my own advocate – and I will only ever politely correct you, but I will correct you (we must break the myths). Most GPs will admit they have very limited or dated (or both) knowledge of Endometrisos – so in having conversations with them you have an opportunity to transfer your acquired knowledge. For example one GP at my surgery now, if suspecting endometriosis will only refer the patient to an Endometrisos specialist. Previously she was referring them to general gynechologists and seeing them return again and again for years to come. This could potentially mean that other women won’t fall down the same path I did, they may then be diagnosed sooner and have less surgeries (a girl can only hope!)
- Act sooner rather than later. Endometriosis can be progressive in terms of its advancement and its implications. Early detection is crucial, but in this day and age it is also rare – taking on average 7-10 years to diagnose in the UK. If caught earlier it could prevent a magnitude of things – and cause better protection for organs, fertility and physical / mental wellbeing. Not to mention the pain worsening! If you know your body, you’ve done your research don’t hold off, even if there are set backs keep pushing forward.
Prevention is better than detection, and whilst Endometrisos cannot be prevented in the first instance – early detection is essential to limit the detriment and prevent the worsening of an uncontrolled and undetected illness.
The Endo community can’t go back on what they have experienced – but collectively they want to eliminate as much as possible, the future generation reliving their experience.
How to find an Endometriosis specialist?
Nancy’s Nook: Search on Facebook, includes Endometriosis Specialists across the world, its where I first found my specialist and includes so much knowledge.
Accredited Endometriosis Centres: https://www.bsge.org.uk/centre/
First surgery with an Endometriosis specialist, second surgery in six months, third surgery of this kind.
When you know better, you do better.