Many patients, especially the ones with chronic illnesses, are experts by experience, or experts in their illness. Endometriosis is a disease whose symptoms can start from a very young age and can last for several decades. During these years endometriosis sufferers are subjected to multiple types of treatment, going from one doctor to another, hoping that they will finally find out a name for their suffering. And here comes the thing, most of them are not believed. The ones that should help them find out why they suffer, why they are in pain, are the ones questioning their sanity, their symptoms, their lived experience.
Believe us, a plea from endometriosis sufferers
A few days ago, we asked our followers to educate healthcare professions using one phrase. We have got many comments and the majority of them put the dot on the i; dismissal, not being taken seriously, gaslighting.
BELIEVE THE PATIENT
Listen to me describing my pain without doubting me.
Show more understanding and compassion. Learn how to really listen. Go back to school and learn how to treat endometriosis with excision technique.Yes it will take a lot of your time and maybe will insult your egoism at first…but in the long-term all the above WILL make you the kind of doctor you are ought to be !!! You have to do better!
Listen with validation, not judgement
believe me. no genic castration and no nonsense like anticonception solves endometriosis. do not conceal things that have been found. They will surface when I read the scan reports myself. plus be honest. 95% of all doctors cannot do this. And 99% of doctors for endo cannot do this in the Netherlands.
Train better, learn that endometriosis is a whole body disease
The lack of specialist training or knowledge has also been mentioned by many sufferers. In endometriosis this translates as incomplete surgeries, ablation, or removal of organs. The only option that has proven so far to be the most effective one, excision, requires a high level of training, and only a small number of doctors are doing it.
There is no chemical / pharmaceutical “cure”, stop throwing meds at a problem, masking the symptoms and pushing problems to a later date. Just because you “can do” excision doesn’t mean you should. Refer to an endo specialist.
Castrating women does not solve endometriosis.
No one is too young to have endometriosis. Endometriosis has no gender.
Take a fellowship with an endometriosis excision expert and do better.
Treat our pain more effectively by incorporating other modalities like physiotherapy as a given, not just focusing on excision surgery – that’s only one step to healing. I’ve had so many women message me who didn’t even know what pelvic floor therapy was as no one ever mentioned it to them. Pain reprocessing therapy, counselling, nutrition and more – none of these things are ever mentioned yet if we were cancer patients we’d have these at the drop of a hat. Endometriosis is a serious condition and we NEED bucket loads of help from competent professionals to get well – we can’t do it alone.
Endometriosis is outside the uterus. Please don’t treat Endometriosis like Adenomyosis. Endometriosis isn’t rogue endometrium.
Endometriosis is a whole body disease, please ensure you are referring patients to surgeons who have a multidisciplinary team of specialists who can understand all presentations on imaging and completely excise disease during surgery”.
Endometriosis has been found in every system of the human body, you can not tell me my pain is not real or present. The damage from the disease alone is enough for chronic repercussions.
Extrapelvic endo is not rare
All patients with the same condition don’t all present the same way. And I’ll and another one…at the point of diagnosis and “treatment” there is no guarantee that all your symptoms will improve or disappear but we will work together to manage your symptoms in the best way possible.
It is a whole body disease.
It’s a never ending whole body disease.
