Rubikin

Hi for many years I suffer hidradenitis suppurativa particularly in my breasts and often visit A&E to have enlarged cysts drained or surgically removed, I would like to take part in research trials for this. I find wearing 100% cotton bras and spraying paraben free deodorant avoiding consuming high content sugar products and using hair removal cream non-shaving helps to reduce the swelling. A&E departments do not welcome sufferers and blame it on lifestyle, they also tell us to go back to our GP, yet the GP practices refuse to deal with it, I have asked many times for dressings o prescriptions in case of sudden attacks making sterilization / cleanliness difficult to organize and I am never taken seriously.

My disease is secondary sjogren's related inherited from a family member who went on to develop non hodgkin's lymphoma then peutz jeghers disease. Lack of research knowing what tests to give me and ignorance around this matter persistently informing different medical staff when asked is generally well/unwell is beyond a bore and I now release we have to be the experts and self identify causes and effects as opposed to agree with them what could trigger these things. I suspect a link between obesity which is the onset of the other illness I have, this is where life becomes a vicious cycle for me and weight loss is extremely difficult with food allergies on a low income, organic foods and the raw food industry is definitely my answer as fruit / veg bought in the mainstream are injected with pesticides and contain other foreign bodies, something I don't need when my body's immune system is already working 5 times harder than a healthy immune system to fight off infection while my lymph nodes are dysfunctioning. the NHS are ignorant and useless at recognising this.

1 Reply

oldestnewest
  • I feel for you my hs is mainly in my breasts and its very painful plus the drainages at the hospital were the worst pain ive ever felt. Again I am also in the same situation as you as I have been told time and again to loose weight but due to other medical conditions I'm finding it near on impossible. During a random hs related blood test I was diagnosed with low thyroid which initially they refused to treat and after months of fighting they might actually be giving me meds for next week. I have been trying to help my self with dietary and supplementary information ive found on the internet to help both conditions but the list of foods I'm able to eat gets smaller and smaller!