Work, benefits, pain and frustration....

Hi there,

Just need to moan really....I am just totally fed up! I work 15 hrs a week as a nursery nurse and I am always knacked and in pain everyday. 15 hrs isn't supporting me and ,my husband well, he works full time. But I physically struggle everyday, I just dont know what to do. Any type of work will cause me discomfort, if I stand for to long I have to sit, if I sit for too long I have to stand. I'm so frustrated.

Does any one get any type of benefit with endo?

I got put on new pain killers last week , skin patches. Which I ended up in a&e with an allergic reaction. Nothing seems to work. I am worried about my op coming soon, they say they isnt a lot of endo to burn away, but why am I in so much pain all the time.

My husband is so supportive but I feel so bad, cause I am always unwell. I am sorry to moan but just need any advice on work and endo.

Most thankful for your time.

Helony x

[cupcakegirl]

I completely understand - I was diagnosed with mild Endo ten years ago but have always had very severe pain. I've been on very high doses of morphine or other opioids for that entire time. In addition to the pain, I have always had bad fatigue but this worsened a few years ago to the point where I couldn't function - I was told I have ME, but now I have loads of joint pain so I'm being referred to a rheumatologist for further investigations.

Many GPs and even gynaes have told me that my Endo isn't severe enough to cause my pain, even though the amount of Endo doesn't dictate the amount of pain. I do think there's a limit though - I used to see an amazing pain specialist who believed that my nerves were so used to sending pain signals after years of untreated pain and multiple surgeries that they were sending the signals whether they were being stimulated or not. This is the only explanation that makes sense to me.

You might want to try something like pregabalin or amitriptylene which are prescribed for nerve pain - unfortunately they make my fatigue much worse but I'm trying to stick to it.

I had to give up working two years ago after trying all kinds of flexible working - some ladies with severe symptoms do get benefits but the assessments aren't really geared towards pain or fatigue so it can be difficult to get them. Perhaps speak to the CAB for some help with the forms.

x

[Hidden in reply to cupcakegirl]

Hi Cupcake girl,

Thank you for your time in replying.

I shall be calling CAB. I just dont know how much more emotionally I can take 8f the pain.

I am sorry to hear of your pain, but also pleased I am NOT THE ONLY ONE. I feel so alone sometimes even though I have a very caring husband, I feel like a pain in his life.

It's interesting to hear about the nerves, I am going back to doctors this week and may have a chat with him, I have suffered for 10 years and my parents just said it was growing pains. I already had sugery for my apendix and they came by fine. Its just one long wait of pain.

Sending hugs for your help!

Helony x

[cupcakegirl in reply to Hidden]

Sadly mild Endo and severe pain is a very difficult combo to treat because physically there's very little to deal with and pain often returns quickly after surgery. You'll also get lots of doctors who'll say that your pain can't be caused by the Endo because it's "only mild" - the gynae here discharged me after my lap because it wasn't very severe, regardless of the state I'm in.

Have you tried zoladex? It was amazing for me but sadly I stayed on it too long which has caused its own problems

X

[Juleyanne]

Agree with previous commenter - book appointment with Citizens Advice Benefit Specialist, there is often a few weeks wait. Keep all evidence (letters from consultants, Gps and details of all treatment, operations and ongoing investigations). Fluctuating conditions chronic pain and fatigue and multiple symptoms are notoriously difficult. CAB should help you.

[Juleyanne]

Adhesions (scar tissue) related to endometriosis inflammation/lesions can tether to adjacent organs and cause chronic pain/nerve pain.

[Hidden in reply to Juleyanne]

Hi Juleyanne,

Thank you for your advice. I have keep most of my hospital letters already so thats a start. Sugeries said I got barely any scar tissue from my pervious ops or endo. Got geny at the end of month lets she what they say this time.....

Helony x