I have only been living in London for two months.
When a fellow endo sister on Instagram saw I was in London, she asked me if I was interested in getting together for a coffee. I thought, why not! It would be a nice way to make friends and connect with someone who was living with the same condition I was.
She also mentioned a support group that was coming up and run by Endometriosis UK. I thought it would be a good idea to attend this support group, to connect, and learn more about this mysterious condition, so I attended.
And boy was I in for a surprise.
There were 14 women in total, myself included, and a nurse. We sat in a circle, in silence, until an organiser said, does anyone want to start?
We all kind of looked at each other unsure of what to do, until a woman who looked like she was in her 50’s kicked things off.
She has Endometriosis where she experienced pain, some more extreme than others, but she felt she was able to go about her life OK. She then pointed to the young girl sitting next to her, who was her granddaughter, and mentioned how horrifying it was to see her granddaughter have the same condition, but experience severely debilitating pain.
Sitting there listening to her describe her granddaughter’s pain was actually horrifying. The young girl was a dancer. A year ago, out of the blue in the middle of a rehearsal, she felt an excruciating and sharp pain in her abdomen, and it just kept getting worse and worse. Her pain worsened and she eventually discontinued dancing. She would be in pain constantly, she would be missing rehearsal, and her friends and fellow dance students just thought she was lazy, trying to get through rehearsal or just didn’t believe she could be in that much pain. She has had surgery, however, the pain is still quite intense, to the point where she could barely eat food. The only thing she could stomach is a slice of bread to have with her medication.
Her mother attended this support group as well. Her mother was lucky enough not to have Endometriosis, however, her sister did. It was quite apparent that Endometriosis ran in their family.
Then there was a woman who asked for pain treatment recommendations. She was originally put on the contraceptive pill, however, she had very intense migraines so she wasn’t able to take an estrogen pill. She tried other forms of medication, but she still had headaches. She battled head pain and endo pain for months, switching from medication to medication in hopes of finding a treatment that would work for her, and was eventually told by her doctor that she pretty much ‘had to choose’ whether she wanted to live with the headaches or the Endo flare-ups.
Let me tell you, my jaw dropped hearing this. How appalling! The nurse at the support group suggested she treat the two pains as separate conditions instead of one.
Another lady wanted to know how long after surgery it would take for the pain to eventually go away. She had noticed less pain since surgery, but it still hadn’t completely gone away. She revealed as she was sitting there, she was in pain.
A couple of the ladies also mentioned feeling absolutely dreadful during flights. They experienced a bit of anxiety before their flight, intense flare-ups during the flight, as well as throwing up throughout the flight and feeling absolutely exhausted afterwards.
And finally, there was a woman who had absolutely no symptoms whatsoever. Her surgery went smoothly, she was back at work within a week post operation, and has lived a relatively nondisruptive life since, with a few flare-ups here and there.
You see, no two Endo journeys are the same, or ever will be. Some will present with excruciating pain before and after diagnosis, others may not have any debilitating symptoms at all. One form of treatment may work miracles for one woman but not for another.
Don’t feel like you’re alone in your journey, we are all on our own journey with Endometriosis. The most important thing you can do is listen to your body. You know it better than anybody else. If something doesn’t feel right, seek help immediately.
Yours in Health xx