I am covering just the basics of endometriosis in this opening post so I won’t go in depth into treatments as I feel that they deserve there own pages.
So where do I start? The crippling periods at age 13, the painful intercourse at 17 or the chronic fatigue and exhaustion at 23?
I have a disease called Endometriosis, I know trust me it is as complicated as it sounds. If you want to say it it sounds something like this end-oh-mee-tree-oh-sis.
I will give you a brief run down of what Endometriosis is and some if its varied and painful symptoms.
So every month us women go through certain hormonal changes, the womb lining increases in preparation for a fertilised egg, if you happen to not be pregnant your womb lining will happily shed away and cause a week of crimson misery for most of us. With Endometriosis the cell reacts the same way but are located outside the womb, so each month the endometrial cells grow, then break down a bleed however unlike a period the blood has no way of leaving the body. Still with me? This process of growth and break down leads to inflammation, pain and in some cases a thing called adhesions which is basically internal scar tissue. It can also occur on the ovaries causing things called chocolate cysts, yup they look like big balls of melted chocolate, lovely huh?
Now lets just state what Endometriosis is not, it is NOT Cancer, it is NOT contagious and it is NOT a infection. Right we got that awkward bit out the way lets look at some symptoms.
There is a whole host of symptoms so I am going to list them, these are just a few that someone might experience.
General Pelvic Pain
Heavy periods with or without clots
Spotting or bleeding between periods
Chronic Fatigue and Depression
Some women also suffer bowel and bladder pain which can include pain on bowel movement, irritable bowels and pain after urinating often feeling like cystitis.
So how do you find out if you have Endometriosis or not? This believe it or not can take on average 10 years! 10 years, a whole decade! I know, I know control your shock. There are several reasons that it takes so long, endometriosis is often misdiagnosed as IBS, Appendicitis or even pelvic inflammatory disease. GP’s first approach is conservatively, monitoring symptoms and in most cases prescribing birth control to see if this helps the period irregularities or pain. However this is usually not a long term solution or even helpful for most girls. The next step in the diagnosing process is to get referred to a gynaecologist (Doctor that looks at your downstairs bits) this can also be disappointing for some girls as again a few doctors want to try conservative management before surgery. Ah yes surgery, the ‘gold standard’ in endometriosis diagnosis.
Surgery for endometriosis diagnosis is usually done by laparoscopy. This involves a telescope being placed through the belly button, another incision is usually made where carbon dioxide can be filtered into the abdomen, this bloats the belly so that the surgeons can get a good look around. A laparoscopy is done under a general anaesthetic and commonly for a diagnosing operation takes about 30 minutes and is usually a day procedure. If endometriosis is found during the operation the doctor may treat it while they are in there. Not all consultants will do this so it is worth discussing what they will or wont do during the operation.
So you have just had a laparoscopy and beentold your have endometriosis. You probably have lots of questions and fears about what happens next and how severe your endometriosis is. Endometriosis has 4 stages of diagnosing, 4 being the most severe and stage 1 being the least severe. One thing that is important to mention is that the amount of endo does NOT correlate to the pain or symptoms somebody may be experiencing. Some girls have severe endo and no pain where as other have 1-2 spots and are in agony. So the staging, this is complicated but I will make it as easy to understand as possible starting with the most severe.
Stage 4: Is the most severe of the Endometriosis stages. Here you would have would have many deep and superficial implants. Stage 4 Endometriosis also have large adhesions.
Stage 3: The implants found must be superficial as well as deep to classify in this stage. There should also be areas of scar tissue and adhesions that stand out prominently
Stage 2: Is said to be mild. The diagnosis is based on the discovery of small adhesions and areas of scar tissue as well as a number of small implants.
Stage 1: Is called the minimal stage. This means that the cases of endometrial tissue growth found outside of the uterus are few and isolated.
Obviously it is never as clear cut as that but it gives you a rough idea.
I think that wraps up this first post. I wanted to keep it fairly brief and cover the basics. I will be writing more in depth posts on treatment options etc, and also a post covering my endometriosis story so far.
Thanks for reading.