My endometriosis journey started shortly after my first period. I got that, in a library, at age 12. By 14, I was already in excruciating pain. My periods also never really completely settled and were still fairly irregular. I would often bleed through pads overnight and soaking my sheets in Napisan was a monthly occurrence.

Since my mother had terrible pain from periods when she was a teenager and used to vomit and faint, I counted myself lucky that mine didn’t seem to be as bad (I never vomited or fainted) and figured it was normal. So even though over the counter medications didn’t completely work (I would still be in pain even when I took anti-inflammatory medications like Naprogesic and Ponstan), I didn’t approach my doctor about it until I turned 19 (as far as I can remember).

I went on the Pill for a year and a half when I was 17 to clear up acne issues. I don’t remember that particularly helping my symptoms, but I definitely didn’t enjoy being on it. It made me terribly moody, made my breasts get even larger than they were already (I was self conscious of this and it was also painful) and generally didn’t make me feel like “myself”.

When I was 19 I went to the doctor because I had not had my period for two months, yet I was still getting terrible pelvic pain. He decided to send me off for an ultrasound, which was a strange experience as a 19 year old. My boyfriend at the time came with me since I was nervous, and I have to tell you, I felt odd that I was getting an ultrasound when I wasn’t pregnant. That ultrasound came back clear, so the doctor told me to just deal with the pain and sent me on my way (N.B. endometriosis cannot be ruled out through ultrasound).

At 22, I went to see another doctor about it as I was still in pain and it was interfering with my life. She put me on another Pill (Yasmin) to try and manage it but again, it made me so depressed I would cry everyday so I came off it after 3 months. I remember one night waking up at 2 am when the FIFA World Cup was on, dragging myself out of bed and rocking back and forth in the foetal position on the couch while dad tried to distract me with commentary on the soccer. Although I have never been in labour, I can tell you that the pain was contraction like and came in waves that time. Other times it would be a constant ache in my belly, or feel like someone had taken an egg-beater to my guts.

By 23 I was missing work on a regular basis - I had at least one day off work a month because of period pain, and would be in pain a week before my period. I also caught pretty much everything going around and tired really easily. A few times I got terrible back cramps where I couldn’t sit up. I knew that it was not normal after all. My friend had a laparoscopy to look for endometriosis and after this I decided to go to her doctor because he took her complaints seriously. So I went to that gynaecologist and he booked me in for surgery. I ended up having to wait 6 months to have my laparoscopy.

In March 2012, I had my laparoscopy where I was diagnosed and some of the lesions were burnt off. Before I went in, I talked to my surgeon (he was not the same doctor as my gynaecologist) and he questioned me and told that it was probably “just PMS”. This was pretty traumatic to go through, particularly when he claimed that they found what they expected to find (stage III - moderate - endometriosis) when I came out of surgery. I also had a Mirena IUS inserted to treat the endometriosis.

Since then my symptoms have lessened - I no longer have the excruciating labour-like pains, but I do have pain every day. I feel the need to pee constantly (I’ve got lesions on my bladder) and still get some pain before and during my period, although it is no where near as bad as before.

Soon I’ll be having my Mirena taken out (my doctor is worried that it is causing my recently developed anxiety and depression due to my history with the pill) and will be trying a new medication to lighten my periods. I’ll also be trying a new diet of endo friendly foods with Project Endo to see how that goes. I may have to have another laparoscopy but let’s hope not.

I guess we’ll see how it goes!


Thank you for sharing your story Libby.

If you would like to contact Libby, you can follow her on Twitter @libasauraus. You can also visit her blog over at The Chronic Caper.

Remember, every one of us has a different story, and the more shared, the more we can learn. If you are interested in sharing your story, please contact me at shireen.emlwy@gmail.com.

S.