Does this ever go away? Or get better?

I have suffered from autoimmune disease since I was born and have endured massive pain before but it was in waves, so I had times of peace.

We moved to Cornwall in September 2012 and I was very stressed and anxious at the time. As the days wore on I felt iller and iller with intense lower back pains and lower abdomen discomfort a fever and took to the settee for about 3 weeks.

I ended up in hospital in the worst pain I have ever felt and was passing blood clots. After scans and ultrasounds they found cysts on my ovary and suspected endometriosis. Six months later I am still on the settee and in intense pain sometimes for days on end. I am being investigated but the treatments seem so harsh.

I was advised that they could stop my cycle but there are risks attached it's like the devil you don't know yet.

What treatments work? Surgery for me is a life or death option because of the previous surgeries that I had done.

This has taken over all our family life and has taken me hostage. I have never felt this miserable or not in control of my health before, my diet has completely changed and I my appitite has decreased quite alot depending on the levels of pain.

The pain relief helps but it does not completely take it away, I am on Codiene, paracetamol, and Oramorph every few hours.

I hope we all find an escape to this awful disease.

Thank you.

2 Replies

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  • Hi cath39. Thank you for sharing your story. You have been through the mill bless ya. Sorry to hear you are suffering so bad at the moment.

    I was diagnosed with endo when I was 27 after 14 years of struggling on. During all those years my symptoms varied from extreme to about bearable. I am now 30 and am going through the extreme again of it totally taking over my life and feeling so low and teary. So much so that I am going to go back to the gp to get referred again to a gyno. I am not taking any of the hormonal treatments as they bring on menopausal symptoms and I am wanting children.

    I find that I never do not feel endo, but I can have days when I can still function and get out and other days when I cannot do anything and am home bound (which for past 4 months has been a daily occurence). Endo never goes for me.

    From some of the posts on this site I have seen, some ladies have found medicines or diets that help ease it. Of course a Lap can be useful if they find something and can remove some of the endo to try and give some relief. But I see from your post that operations are a touchy area for you and a last resort.

    I am sure the other ladies on this site will have information and advice of beneficial use to you.

    I am afraid tho that nothing, I don't think, will eradicate it.

    I hope things get sorted for you soon and you get some relief from the endo soon x

  • Hi cath39.Gosh I feel for you.not sure if you are aware that there is an endometriosis clinic at Treliske hospital.If you haven't already,get your doctor to refer you.the nurse is lovely and very approachable and I am sure she could discuss your options with you.Good luck.

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