I have been on this group for a while and finally have the courage to send a message as I have tried everything to get by with my condition endorsement. I found it so difficult to get up in the morning as I wake up tired and flare ups are so intense cannot walk, I have had surgery a few years ago but appears it is back with revenge. I need advice, I worked at the office everyday but now remotely and still battling and have major flare ups l, hurts when I Pooh or pee and have to continuously explain myself to my employer and family which makes sense but mentally draining and now have a case to review my role but need some advice as I am falling apart and can’t get up, please any advise with this condition and how to deal with it in a work related aspect?
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ThisistheEndo
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Yeah I'd suggest going down occupational route site first. They should be aware that endo often comes under the Equality Act given it can (and does in your case) have daily impact on your daily living and quality of life. They can usually support with setting reasonable adjustments for you. I know you work from home now but have a think about other things you might find helpful, could be flexible start/finish times if you feel better at other times of the day for example / need time for pain relief to help when your first waking up, also building in mini breaks for you, and in some situations they can adjust the trigger points on the absence targets to support you.Access to work may also be worth looking into - I've not used this but a friend of mine with CFS has been able to get an adjustable work desk and an ergonomic seat which I believe has heat and massage which provides some relief.
Union representation in formal meetings is recommended as they can speak for you and are all clued up.
Hallo, I suggest joining a union now while you go down the occupational therapy route as you might need to be a member for a certain period of time before you can ask for their help.
So glad you built up the courage to reach out on here
Many of us have been the your position, and it sucks! Things can and will get better.
My union UNISON was incredible last year when supporting, advising me, and being my pillow of strength during difficult periods at work.
Occupational Health have also been a big help supporting, and advising me and my employee when it comes to making adjustments for me, and helping my employee’s understand my health condition, and how it can/does effect me.
Reach out to your GP or Endo specialist, keep them in the know of how severe your symptoms have been. And demand you need to see or speak to them asap. They can also put you in touch with a pain specialty. U have had many consultations over the telephone, discussing my symptoms, and what to take and not to take.
Hello ThisistheEndo,Yes I have been the same. I think you are fournate to work mainly remotely at least you can pull faces, sit or lay down.
I struggle for yrs in my career, my boss wasn't present most of the time. A small company me as a designer, producing work to deadlines. I managed 14yrs there. I did the IVF but failed. Mentally started issues about coping so left work. I helped my partner build his career to increase income. I had little personal life or enjoyment as ill, in bed, in the Bath for hrs often sleeping in hot water. Unable to walk as I couldn't feel my legs for the pain. I can't do distance or uneven now yrs on. My determination, grit and supportive partner before he left and his Ltd business I helped built, kept me going. Since I spiralled into PTSD being isolated from the world on basic government benefit for this serious illness. I worked hard in the past, planning, saving as I never spent money. Always been on sleep catchup, at least 10hrs. I only in the last 2 yrs managed days out. I don't see family or never saw family as general to ill to make long journeys, I have a male friend who I can't have a proper relationship, it's very on and off. I have excepted how I live. My home is my castle. I do hobbies. I have have a high experience of my suffering/knowledge, I've gained over research on Medical Papers and Blogs Sites.
One of the most interesting experiments carried out in US 70's was feeding monkeys polystyrene where almost all got Endo.
As to coping with Endo:
Diet changes with soluble fiber, cut gluten, lactose. Eating small portions 4 to 6times all.
Uping water, cutting coffee.
Using a low foodmap.
Taking Fennel Tea or Belladonna to stop gramps at night.
Using TENS machine and hotwater bottles.
If possible on a drug like Zoladex.
Taking Ponstan 40/Co-dydramol prescribed but not always works. For 2 yrs my doctor gave me Morphine patches which I would only use 24 or 48hrs, not every day as I didn't want to get addicted. Using various painkillers over the counter but never mixing them.
Reflexology and Healing.
I go to Healing at a church, I thought it would be useless but I thought I'd try, have been amazed the wellbeing it has given and better sleep. Since learnt Reiki which I can curb the pain off on myself.
I do floor excerises to maintain strength, reduces stress.
Apart from the pain we suffer I feel our general lives day to day are heavily impacted. My thoughts sometimes wander for me how different it might be without this disease. Smiling exercise in front of the mirror is good for the brain. Repeating a big smile tells the brain you are happy so over time this starts to work. It sounds conceited but we must stay in good spirits . . . Sometimes I laugh at myself.
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In pain frequently
I can’t work full time.. anyone else?
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Work, Living & Endo!
Mental Health
