Search endometriosis experiences

I first had bowel-related symptoms and bloating at 16, was diagnosed (but not really helped at all) as having IBS in my mid 20s, told I ‘probably’ had endo in my mid 30s although all scans were clear. After pushing again I finally got referred for a laparoscopy - which I had 2 days ago, age 43. It’s found severe endometriosis, stage 3/4 - affecting a lot of organs and my womb was fused to my bowel. That’s 27 years of pain, discomfort and feeling like I was a fraud or a hypochondriac. Feel so happy/relieved/validated now but also cross at being so let down for so long.

I was referred to Gynae in Jan 2019 after 2 and a half years of left sided pelvic pain and worsening periods. The doctor I saw at my initial appointment didn’t think it sounded like endo but they decided it would be best to do a laparoscopy anyways. I was diagnosed with endometriosis in September of 2019 aged 21. I did consider myself lucky that I was only experiencing symptoms for 3 years before my diagnosis. But then as I learned more about endo and the symptoms it can have, I realize that my symptoms were vague but started much much earlier. Aged 5 I had to have a camera into my bladder and into my vagina as I was complaining of stomach pain and had vaginal discharge from that age. Aged 12, Gastro symptoms began and aged 16 I had my first of 3 colonoscopies. Though I’ll never know if those symptoms were endometriosis related or not, my journey with health has spanned across the past 21 years of my life. And I’m sure it will continue for 20+ years to come.

My experience for several years since the age of around 15 has included extreme pain on day 1 of my cycle, although this has tended to happen at most 2-3 times per year. Apart from this, I have sometimes had bad but not excrutiating pain several times a year on day 1. Other times my period comes along and is pain-free, or the pain is minimal. The excrutiating pain, although it isn't as frequent or long-lasting as what some people with endometriosis have, is still excrutiating in itself, and when it has happened, it has meant I have been doubled over in what feels like a stabbing pain which painkillers have not touched. Going to the doctors did not help much overall. I was told "I was likely just one of the unlucky ones with painful periods" and my symptoms "did not sound like endometriosis because I don't have heavy periods", although to be fair I was able to request an ultrasound, which didn't show anything but gave me more knowledge at least about my body, and it was reassuring to be listened to in terms of my request. It has been tiring at times constantly trying new things to manage pain, but I remain hopeful and am doing my best to keep on learning about my body, supporting my needs and advocating for myself.

I was experiencing blood in my stool that synced up with my menstrual cycle. This was bleeding from the rectum when going to the toilet and sometimes on its own. I also had heavy periods and pain, but it was the bleeding that made me see a doctor. I have had colonoscopies that have not shown anything else and it’s suspected to be endometriosis growing on my bowels. The wait for gynocologist has been 9 months so far. I was put on the combined pill which has helped to manage my symptoms, however I have developed pulmonary embolisms (blood clots in both of my lungs) and so have had to stop taking the pill and symptoms have returned. The risk of blood clots is extremely low and the combined pill was a good option for reducing effects of endometriosis.

Experienced extremely heavy bleeding during my period that would last 7-8 days. Became anaemic for a few years due to my extremely heavy flow. Pain wasn’t too bad to begin with but got worse over the years. Got prescribed the pill for about 10 years. It helped somewhat but not enough so I had to do continuous pill taking to only have a couple of withdrawal bleeds a year. After 10+ years of trying to advocate for myself that something wasn’t right, I was referred to a gynaecologist. Finally had a laparoscopy and was diagnosed with Stage 1 endometriosis. Now trying the Mirena Coil to help reduce my heavy bleeds.