Welcome to my first blog post! I’ve been wanting to do this for years now but I didn’t have the confidence to get started and well, to be honest, I’ve been feeling pretty rubbish for the past few years (more on that another time!) so I guess I put everything on hold. But now it’s here and I’m ready to get started, please be kind though as I may be a bit rusty!
Anyway, I thought that this was the best topic to start with for my first blog… What is Endometriosis? First things first, how do you say it?! Endometriosis is pronounced End – Oh – Me – Tree – Oh – Sis, or you could call it Endo for short.
Endometriosis is a chronic illness where tissue similar to the lining of the womb (the Endometrium) is found elsewhere in the body. Up until October 2020 Endo had been found everywhere in the body apart from the Spleen but it is now formally classed as a full body disease after Endo was found in someone’s spleen.
The diseased Endometriosis tissue behaves in the same way as the similar tissue in your uterus – with each menstrual cycle it thickens, breaks down and bleeds, but unlike the tissue in your womb that bleeds and produces your period, the diseased tissue has nowhere to go which causes pain and inflammation. When Endometriosis involves the ovaries, cysts called Endometriomas (or Chocolate Cysts) may form. The tissue surrounding the diseased tissue can become irritated, eventually developing scar tissue and adhesions (abnormal bands of fibrous tissue that can cause pelvic tissues and organs to stick to each other).
Many people believe that Endometriosis is just a bad period but it is so much more than that. It is an awful disease to live with and can be life limiting. The most common symptoms are painful periods, heavy periods, fertility problems, pain during intercourse, back pain, bladder & bowel issues, depression & anxiety, & bloating (affectionately known as ‘Endo Belly’). Endometriosis most commonly involves your ovaries, fallopian tubes and the tissue lining your pelvis. Rarely, endometrial tissue may spread beyond pelvic organs.
Currently there is no cure for Endo, although thanks to more and more awareness being raised, there is alot more research taking place. The gold standard treatment is excision surgery (basically this means you cut the roots of the disease away) but many gyanecologists still perform Ablation Surgery (this is where they use a laser to remove the diseased cells but this still leaves the roots behind). Many Endo Warriors are put on hormone treatment (please note that hormone treatment won’t remove Endo but it may reduce your symptoms and reduce the likelihood of the disease spreading) such as Prostap (induced medical menopause), the contraceptive pill, Mirena Coil and many more. It really is a case of trial and error with regards to hormone treatment, what works for one person may not work for another. But it is important to know that the only way to formally diagnose Endo is via Laparoscopic Surgery. Some Deep Infiltrating disease can be seen on MRI scans, and some Endo trained Sonographers can see signs of the disease on Ultrasounds BUT just because you may not have signs of endo on scans it does not mean that you don’t have it! It’s all a bit complicated really!
A couple of Endo Myths that I’d like to bust…..
‘A Hysterectomy Cures Endo’ – FALSE….it really doesn’t!!! Endometriosis is a full body disease and by removing your uterus it doesn’t mean that it can’t grow back.
‘Pregnancy Cures Endo’ – FALSE….I know lots of Endo Warriors who have had children but their Endo has grown back. A Gynaecologist actually told me to get pregnant to relieve me of my symptoms when I’d just had 4 failed rounds of IVF. It’s a bit of a touchy subject so I’ll talk more about that another time!
If you’re new to the world of Endometriosis then this might all sound quite scary and overwhelming to read. It is possible to live well with Endo, many people do, but it may take time for you to learn how to best manage it for yourself. Please just know that you are not alone, there is a whole community out there who will be happy to support you so please reach out. For now take it easy, don’t put pressure on yourself and rest when you need to.
Take care fellow Endo Warriors, I’ll see you in the next post.
Sending gentle hugs your way.