Thread by @Kathleen_M_King

With all the recent media coverage of #endometriosis (which is much appreciated) there is a lot of misinformation which has potential for harm. My inbox is filling with dispair and hopelessness. While #endometriosis is a chronic condition, there is hope. Another 🧵

Excision surgery can remove the disease and improve quality of life and in some cases fertility. There is always a chance of recurrence (not quantified in the scientific literature) but it is lower than with ablation due to the meticulous removal of *all* disease.

Over 70% of women with #endometriosis will conceive. This figure may be higher with disease removal and assisted techniques such as IVF, donor egg, donor embryo etc.

Women chose to travel for many reasons, availability, surgeon choice, surgeon training and experience, personal preference & accessibility of a multi disciplinary team. No one has the right to criticise others for travelling and the choices they make for their own health.

Endometriosis is incredibly common, you all know at least one person with it. It can be mild, it can be brutal, it can be ignored, it can be life altering. Each individual experiences and deals with it differently. Shaming women doesn't help.

Facts matter. They matter because people make life changing decisions based on information. Misinformation can lead to organ loss, chronic pain, lost fertility and many other financial, physical and psychological impacts. I cannot stress this enough.

I draw not only from my own experience but that of 1000s of others. My background as a medical scientist and patient advocate gives me an opportunity to partake in research, guideline groups and expert panels. #endometriosis

So while #endometriosis is a chronic condition, that can be helped by good surgery, there are many other areas to address. Multidisciplinary approach is key, pelvic physiotherapy, dietician, exercise etc all play a role in day to day management. No one treatment to fit all.

The reason we know so little about #endometriosis is down to the lack of investment in research and treatment development. The research is not there to make definitive conclusions. You can make your own guess as to why 200 million women are not listened to.

@UnrollHelper