u/Littlebirdy27

Something I’ve been noticing for a very long time is that even if I don’t use my legs, becoming fatigued by other activities still causes worsened leg muscle weakness.

For example, today I went to hospital in my wheelchair via an accessible cab, stayed in my chair the whole time, came home and started to rest. However I was very tired by the outing, and still experienced much worsened leg muscle weakness by evening and still am tonight.

I’m awaiting full clinical examinations and testing, but wanted to ask if this was common in others? I’ll be sure to mention it to the neurologist.

Thank you ☺️

Post surgery in 2022, the pain started coming back a year later. And the bloating. And the nausea. Worst of all, the worsened fatigue kept worsening. On top of that, the hugely awful flares twice a month made my very mild ME much more severe. I developed POTS and MCAS too - all comorbidities with endo. I didn’t have a Covid onset for any of this worsening, though not discounting the possibility.

In May 2024 I could no longer function. I truly believe that it was the worsening of my pelvic and thoracic endo that drove the suddenly steep decline in my overall health. My surgeon agrees. And it is endo that keeps my as sick as I am now - housebound and so fatigued I cannot function day to day, trying to live through pelvic and thoracic flares that only get worse and worse.

Are you also one of the 1 in 6?

How are you coping mentally and emotionally with this disease and the impacts of it?

What are your days like?

Are there any nice things you do for yourself you help you get through it all?

How are you dealing with the never ending illness and welfare admin and advocacy?

I just wanted to create a wee space for those of us who are in this position to share and speak about our situations. I see all of you 🫂

(1 in 6 figure from the recent BBC documentary, Emma Barnett: Fighting Endometriosis)

I desperately need specialist thoracic surgery for endometriosis, already identified on an MRI and concurrent with hellish, life limiting symptoms.

I paid for a consult with a brilliant surgeon from Guy’s NHS hospital in London who specialises in surgery for thoracic endometriosis. He is of the strong opinion that I need surgery relatively promptly and offered to recommend treatment in England.

I was previously referred to the Golden Jubilee in Glasgow, but sadly they’d never seen endometriosis on the thoracic cavity never mind operated on it. Not their fault, it’s unlikely patients will ever even reach them as they are too often disbelieved. So, there is no specialist surgery I can access here with a safe and well practised surgeon.

I can’t keep gasping for air, coughing up blood and being in agony twice a month for many days at a time. I’ve now got my letter of recommendation from the surgeon in London - but I cannot for the life of me understand the opaque process detailed on the NHS Scotland National Services web page and my GP doesn’t know where to start either.

Can anyone please offer any advice? Private surgery is not an option. I am unfortunately one of the 1 in 6 people with endometriosis who have been forced to stop working due to the brutality of the condition.

I’d be grateful if anyone has any information on this process. Thank you.

TLDR: My parents are not grasping that highly stressful, emotive family issues are well beyond my ability to cope with after two years of being mainly bedbound and suffering as much cognitively as physically with ME and comorbidities. Advice welcome.

I am so lucky to have a kind and supportive family of my parents and sibling. However, my parents are expecting me to be capable of the same level of emotionally involved and mentally taxing conversation that I was before becoming severe and bedbound 2 years ago.

The main example (but far from the only one) is that my sibling is going through a really tough divorce. My parents want to update me and discuss the very latest happening with their ex at every turn. They want my thoughts on everything, they keep me on long telephone conversations, call me with the latest text messages sent from the ex to them for thoughts and discussion, and worst is when they visit all the conversation centres on this highly emotive topic. This means they come here and bring in a whole heap of stress and after many weeks of it, I’m stressed to the max and not coping.

I suffer as severely cognitively as I do physically. I had a four month crash last year that took me to the very edge of very severe. My health is increasingly precarious.

I know I need to put down boundaries but trust me, I have tried several times and they keep on trampling on them. I think this is mainly because they cannot fathom that talking, never mind about emotive, stressful things, makes me sicker.

Does anyone have any advice on specific phrasing I could use to explain I can’t do this anymore?

Side note is that I want to save any talking about heavy stuff energy for my sibling where I can. They need a chat now and again more than my parents do and I want to try to retain that ability.

Thank you 🫶