Last night I attended my first Endometriosis UK support group. I had absolutely no idea what to expect, having never been to any form of support group before, but I was fairly sceptical about it. (I guess spending seven years being told your pain isn’t real makes you see most things from a sceptical point of view).
To clarify, I will not be sharing the personal stories, details or experiences of anyone else from the group as I have not asked for their permission to do so. I will, however, pass on any helpful tips or information from these sessions.
The group is led by one or two volunteers from Endometriosis UK, and there is at least one (sometimes two) endometriosis clinical nurse specialists present to help with any medical queries. We each introduced ourselves and shared our story and diagnosis process.
One of the main topics covered was pain relief – it seemed to be the key issue that has been playing on everyones mind in the group. Personally, I’m happy to use medication to help with my pain, but I am very aware that with the amount of pain I do experience I could end up putting a lot of medication into my body. I would much rather use medication-free pain relief, unless the pain gets to a point where I can no longer manage it. My biggest concern is building up a tolerance to these medications, so I would need to take a stronger dose to get the same effect, or developing a dependence on them. Neither would be ideal. This seemed to be a view shared by most of the group, and a number of girls had been trying holistic only pain relief. Some of these forms of pain relief were sensory deprivation, acupuncture and CBD oil.
Another point of discussion was around specialist endometriosis centres, and the best places to get treatment. On the British Society for Gynaecological Endoscopy (BSGE) website, they list all the specialist endometriosis centres in the UK, and you can find the list here. I was surprised how many girls had not been treated by or referred to a specialist centre after diagnosis. You are within your rights to ask for a referral to a specialist centre, even if you are receiving treatment on the NHS. Many of the girls thought you had to go private to be able to request being seen in different locations or by specialists. If in doubt – always research your centre, and push to be referred to a specialist centre. They are much better equipped to help and understand.
Listening to the stories from the other girls definitely helped me. As with this blog, and my instagram account, I do take comfort from knowing that other people have had similar struggles (although I was the only one last night to have been accused of being a drug addict by doctor!). Endometriosis can be a lonely and isolating illness at times – physically not feeling up to going out and seeing people, and having to repeatedly cancel plans last minute can mean that people get pretty fed up with you and stop trying to organise things that will inevitably be cancelled. Through no fault of theirs I end up feeling isolated and thinking that they don’t understand (another reason why I started this blog, to hopefully help people understand more), and spending time with people going through the same things was very helpful for me.
One of the main things I took away from this meeting was that although my diagnosis process has been hellish, and the diagnosis itself isn’t exactly great, my symptoms and pain hasn’t worsened since my surgery last month. Without wanting to jinx myself, I do feel like my pain levels are starting to decrease slightly, although I reckon I’ll need a few more months post op before I can say this for certain. Whereas, a number of the girls last night had experienced worse pain after their op (this is generally thought to be due to more scar tissue forming from the operation, and endometrial cells forming on it), and they have also had to have multiple surgeries.
If anyone is considering it, I would definitely recommend going along to a support group. They’re not always in this format, sometimes they have doctors come and speak at them and then answer questions, which I am looking forward to attending! I was fairly nervous, but everyone is there for the same reason and has had similar experiences. I would say that it has been one of the most useful things I’ve done since receiving my endometriosis diagnosis.
A full list of support groups can be found here, and if you cannot find a support group local to you they also have online support groups, and one to one people you can call or email.