Endometriosis.
I have it.
Lots of women suffer with it. I was really surprised to find out quite how many women currently suffer with this disease!
According to Endometriosis Australia, there are over 800,000 ‘Endo Warriors’ living in Australia today.
Endometriosis is present when the tissue that is similar to the lining of the uterus (womb) occurs outside this layer and causes pain and/or infertility.
Endometriosis Australia
I was diagnosed with endometriosis (endo) just over 3 years ago now. Long story short, I had a pap smear which resulted in CIN3 cells being found (You can read all about it here). Following the CIN3 diagnosis, I was advised by my gynecologist to start trying for children if that was something I saw in my future, as the chances of the CIN3 coming back are high. I was shocked.
Luckily, I was in a long term relationship so having this conversation was not difficult.
We started to try and when nothing happened in the first 6 months, I was sent for a laparoscopy and dye test in a local hospital. This resulted in a diagnosis of severe Endometriosis. The gynecologist attempted to remove as much as she could, but she could not unblock one of my tubes.
Endometriosis Symptoms
Symptoms can include:
- Fatigue.
- Pain that stops you on or around your period.
- Pain on or around ovulation.
- Pain during or after sex.
- Pain with bowel movements.
- Pain when you urinate.
- Pain in your pelvic region, lower back or legs.
- Having trouble holding on when you have a full bladder or having to go frequently.
- Heavy bleeding or irregular bleeding.
I had (and continue to have) very few symptoms, so was quite shocked. My periods had become a lot heavier. I started to experience heavy cramping and was tired most of the time but that was the extent of my symptoms.
I am extremely fortunate that my symptoms have been so mild compared to others. When I read some stories, it is difficult to imagine how much pain other women are in. I am very lucky to have had a straight forward diagnosis. I read so many stories from women having to return to their GP multiple times to get referrals to specialists and in many cases not even being believed.
Complications
I was advised that Endometriosis causes two issues for most sufferers:
- Pain
- Infertility
As I mentioned above, my symptoms have been mild in comparison to many who suffer with this disease. I experienced some pain but it was nothing popping a Panadol would not fix.
In my case, this disease really affected my fertility. I had been on the pill since I was 16 as I suffered quite a lot with bad skin. When I arrived in Australia, I could not find a pill that was similar to what I had been taking in Ireland. I tried a couple over here. I found I was suffering headaches or I felt quite emotional while taking so I made the decision to stop taking the pill altogether. I was advised by my specialist that the pill had been keeping my endometriosis in check. It was only when I came off it that I started to experience problems.
When I failed to fall pregnant within the 6 month time frame my specialist had set, I was referred for IVF. I intend to write a post on my journey and experience. I will link it here when I write it.
What next?
While there is no ‘best treatment’, I have had multiple surgeries to remove endo, which have been successful in removing the disease. However, it does grow back so I know I will more than likely need more surgery in the future.
I can only write to my experience with this disease so far, but there is a wealth of information available.
I am not a medical professional but, if you have been recently diagnosed and are unsure on what your next step is, speak to your doctor and ask for support.
There is quite a lot of support online too.
Endo Active is a tool I found really useful when I was first diagnosed.
Pelvic Pain have also listed a number of support groups and their Facebook groups here.
For more information, you can also visit Endometriosis Australia’s website.
In 2018, the Government also acknowledged the disease and set out a National Action Plan for Endometriosis.
This should tell you how widespread this disease really is!
