After being diagnosed with endometriosis on March 1st 2019 and was told to get surgery to remove the endo as soon as possible, I had 10 days to get ready for my first surgery and get to know my newly discovered disease. (only 10 days after diagnosis… after 10 years of cramps, pain and discomfort…) It was during those 10 days, that I realized that there is so much wrong information and uncertainties out there, when it comes to diagnosing and healing endometriosis… If you believe everything you find on the web, you may think that getting pregnant, taking pills or a hysterectomy (see lexicon below for more info) might heal endometriosis… unfortunately, none of the above is correct… Still today, there is no real cure for endometriosis and not enough research is being done. (see my previous post Endo-What?) Hence one of the reason why we need to give endometriosis more attention… hence the reason why I’m writing this blog. Allthough there is not yet a real cure for endo, there are some possibilities to slow down the symptoms or to ,clean up, your Body, which mostly starts with surgery.
I was so happy that I’ve found the Facebook Group of Nancy Nook! I finally had trust in the information I had found there and I would recommend this Facebook Group to all endometriosis patients and doctors, who want to educate themselves on endometriosis. Nancy Petersen is the person behind this group and is an endometriosis patient herself and one of the most recognized endometriosis advocates of our time. I have a lot of respect for her and her work and am happy, people like her are doing all they can to give endometriosis the attention it deserves.
It was in this group, where I finally got some decent information and explanation about all the difficult words I heard/read, since the day I started my research: laparoscopy, ablation, excision, adenomyosis…, I’m not sure, all of my blog readers are familiar with the terminology either, so I wanted to create an endometriosis lexicon. (which will be completed more and more as time proceeds).
Laparoscopy is a type of surgery, using very tiny instruments (minimal invasive), so they only have to make 3 or 4 small cuts in your body to get inside. This is already a great improvement, compared to the big cuts they used to make for surgery in the pelvic area. One of the instruments used is a small camera, which enables the surgeon to see what’s happening in your body. (see the picture on top of this post to clarify.) The Benefits of a laparoscopy is that you have smaller scars, faster recovery and less pain from the wounds.
Ablation: Type of endo surgery where the disease is burned or freezed away. Adhesions will be burned or vaporizes, but will not disappear completely. This procedure costs less, takes less time for the Patient to recover, but is probably only suited for patients with stage 1 endometriosis.
Excision: Type of endo surgery where the surgeon removes the endo, as if it were a tumor. The entire endometriosis is being cut out or removed. This type of surgery is definitely more invasive, more complex for the surgeon and the patient needs more time to recover. Unfortunately, for Endometriosis, stage 4, which I had, this was the only option. The disease might still come back after excision, but it will take longer than after ablation. The image below seems to desribe it pretty well.
Unfortunately, not many surgeons are skilled and trained to perform excision surgery, as it is very difficult and there are of course risks involved in this type of surgery, such as nerve damage.
In my case, being diagnosed with endometriosis type 4, I had only 1 option: Excision surgery and I could hope only my doctor was skilled and my endometriosis would stay away as long as possible afterwards.
Below you will find more words, which are often used, when reading, writing or Talking about endometriosis:
Adenomyosis: is also called internal endometriosis, because it is made of the same lining of the uterus, but instead of leaving the uterus, like endo does, adenomyosis grows into the wall of the uterus and thickens it. It can cause menstrual cramps, bloating and can result in heavy periods.
Dysmenorrhea: This is the medical term for painful periods, menstrual cramps or any type of pain, which is associated with menstruation. It can even go as far as nausea, dizziness and painful bowel movements.
Hysterectomy: Surgical removal of the uterus. Usually done in case of last resort… but unfortunately in many cases, a hysterectomy has been done to ‘cure’ endometriosis. If the endometriosis is present in different parts of the body, taking out the uterus does not treat all symptoms.
If important words are missing or you find words you don’t understand, please don’t hesitate to add them in the comments below and I will add them to the lexicon.