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Why is Endometriosis so difficult to diagnose?

March is Endometriosis awareness month. Endometriosis affects 1 in 10 women, I am one of them and so is my sister, it runs in our family. Studies suggest that it takes on average 7.5 years for women to be diagnosed. I am writing this blog in hope that I can help spread awareness, if I can help one person it will be worthwhile.

What is Endometriosis?

Endometriosis is when tissue with a similar structure to the lining of the womb starts to form in other areas of the reproductive system such as the Fallopian Tubes and Ovaries. The quantity and size of the tissue which forms doesn’t necessarily reflect the pain which is inflicted on the individual. For example, a lady could have a lot of tissue growing in various areas yet not experience symptoms, whereas someone who has a small amount could be experiencing symptoms and a lot of pain. It varies from one person to the next.

The condition can affect women of any reproductive age and it can have a major impact on everyday life.

What are the Symptoms?

  • Period like pains which can be increasingly worse during your time of the month

  • Bloating of the stomach

  • Pain which can affect your everyday life

  • Sex can be uncomfortable

  • Pain when going to the toilet especially whilst on your period

  • Nauseousness during your period due to the pain inflicted

  • Constipation or Diarrhoea

  • Infertility

  • Heavy and painful periods

Many women who experience the symptoms of Endometriosis claim to have feelings of depression due to the impact which it has on their lives.

If you’re experiencing any of these symptoms, see your GP, and trust your instinct, sometimes perseverance is needed with your doctor to ensure that you get the help you need.

I personally went undiagnosed for many years despite repeatedly going to the Doctors. In 2011 my symptoms were so severe that I was treated for Appendicitis as an emergency and had my Appendix removed. It wasn’t until after it was removed that it was confirmed that I did not have Appendicitis. Yet even after this it still went undiagnosed. After the birth of my second son in 2013, he was only about 8 weeks old and I woke in the night to excruciating pain, it felt like I was back in labour and my husband called an ambulance for me, I was in that much pain I couldn’t breathe and needed Gas and air to manage it. Despite this I went undiagnosed until 2015. I can’t recall exactly how but I managed to persuade my doctor to refer me to see a consultant. The consultant told me that it sounded likely that I had Endometriosis and he booked me in for a laparoscopy. Straight after my laparoscopy I was diagnosed with Endometriosis. I was told that the best thing I could do was to have a Mirena Coil fitted. They said failing this I could have hormone injections. I have now had the Mirena Coil for over 5 years, recently having it replaced, and I can honestly say it’s been the best thing for me. I occasionally experience bloating and pain but nowhere near as often or as painful as I used to, it has definitely changed my life for the better. It may not be suitable for everyone, but it has definitely had a positive impact on my life.

After lots of research I have discovered that it is so difficult to diagnose Endometriosis as women experience symptoms differently and the symptoms can be similar to other things such IBS. This is what kept being blamed for my symptoms over and over again by doctors, but due to my persistence I got the diagnosis and treatment I needed. As women we know our own bodies and we should trust our instinct. If you feel that something isn’t right with your body speak to your GP until you get answers. That goes for anything health related!

I was lucky enough to not require surgery but my family members have not been as lucky.

If you have been diagnosed or believe you have the symptoms, please feel free to contact me to chat and we can share our experiences, of course this would be on a completely confidential basis.


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