Updated: Sep 27, 2021
I am writing this after going to my first Endometriosis UK support group in 9 years! It was just amazing. I can't describe what it is like to sit in a room with people who you are connected to by something awful like this disease, but somehow you make each other laugh and you show your support to those who are struggling right now. It's one of those cases of ‘if you know, you know’. Some of the symptoms and complications of endometriosis are embarrassing to talk about but not with these ladies. We talked about our bladders, bowels, bleeding, hormones, sex and surgeries with no problems at all. It was liberating for me as I struggle talking about the things that embarrass me with this disease. Being autistic makes this harder but I felt so comfortable I actually started oversharing and talking too much!
It was great being face to face but we could not hug because of the covid pandemic and that was tougher than I thought, as being autistic, I am not usually one for wanting to touch strangers. I did want to hug someone who was going through a tough time after several miscarriages. The pain of that is awful and no words are enough. This is the reality of our disease. It can steal away our fertility, our jobs, our social lives, our independence, our relationships and even the person we once were. There is a lot of doom and gloom and it can bring you down. Despite the negatives of this disease, all I took away from the group was hope, love and support. How each and every one of us wanted to help the other was great. Advice was offered where it was needed and no one was at all patronising. There was a lot of reassurance that no one is going mad and imagining their symptoms, which is how most of us feel a lot of the time!
It was so interesting hearing all different stories of endo and adenomyosis (which is a similar condition where the endometrial cells grow in the lining of the womb). Some of the women were near the start of their journey with endo and seeking diagnosis or had a recent diagnosis and others had had it for years and had had multiple surgeries. We were all totally different with our views too. Some of the group were totally against having surgery and/or hormones and for others those treatments were life changing and they were advocates for them. Not one of the women in the group were judged for their choices and decisions. Advice was only offered when it was wanted. Most of all we all listened to each other and our stories. It was just so fantastic and I can't thank Endometriosis UK volunteers enough for the group. Unfortunately there are not many of these groups as are probably really needed. Where I was previously living there was no face to face support group and I was not in a position to start one, so I have not had this kind of peer support for years. In all honesty this group was a little bit far for me to travel on my own as I suffer from agoraphobia, which is improving, but I did it and I am so glad I did and I will 100% be going again.
From this one meeting I gained so much; I took away hope for the future and I found people who get what it is like to go through this illness. Endo sisters know the battles we face being heard despite it affecting 1 in 10! It is actually quite shocking to me that we are still fighting the same battles that we were 10 years ago. Not a massive amount has changed on that front. We need to advocate for ourselves and each other and fight for the endo sisters who can’t right now.
Increasingly in social media I find some women seemingly competing with each other about who has this disease the worst, I get why this happens but it really just does not matter who has it the worst. It is hard enough fighting to be heard by medical professionals. The amount of disease does not always correlate to the severity of the pain or fertility problems. Some women have no pain but have other symptoms and some get debilitating pain but little disease. It does not always make sense to us or those around us and the scientists and experts are still learning. Mental illness often goes hand in hand with chronic pain so let's help each other and lift each other up when we need it.
I am so glad to find a group of endo sisters to meet up with and I am equally glad that the internet can bring us virtually together. If anyone with endometriosis is in a bad place, please join an online community for support or go to a group if you can. Log on to https://www.endometriosis-uk.org for more information if in the UK or search Facebook and Instagram with the hashtag #endometriosis #endosisters to find an online community of endo sisters.
You can also use the forums I have created on this site if it helps :-)
Lots of love to my endo family xxx