I am a 41 year old woman, with a history of recurrent sinus and respiratory infections. These, as well as heavy nosebleeds, go back to infancy. I was Hospitalised as a baby with serious breathing problems, and a really bad infection, and put in intensive care. The doctor thought I might die. I have no idea what the infection was. As I got older, I got heavy nosebleeds, and started getting chest and sinus infections from my teens. I also had very heavy, irregular periods. I was given the Pill, but this did not help. My periods seemed to even out a bit during my twenties, but I had also lost a lot of weight then, and was quite underweight. The respiratory and sinus infections continued unabated. Usually I felt feverish, tired, and had green, yellow or brown mucus that I coughed up, or blew from my nose depending on the site of the infection. In 1996 I had sinus surgery, but this did not really help. The infections continued. I also had my nasal passages cauterised several times, most recently 2008, and 2010. Still I get infections. My doctors (GP and ENT)do little to help, fobbing me off with Antibiotics over the telephone, and telling me I am "just prone to it". I feel I just have to live with miserable symptoms. Then in 2005, to cap it all, my periods got really bad again. Heavy, painful, irregular and clotty. I gained loads of weight, too, about 2 stone in what seemed like no time. No changes to my eating habits to cause it. During my periods I felt regularly sick, nauseous, tired and in pain. I had diarrhoea, and stomach cramps, as well as bloating and water retention. Sex was incredibly painful, and I had pelvic and lower back pain constantly. My GP was AWFUL, and fobbed me off. I was told it was all just "stress" or possibly Irritable Bowel. I had a colonoscopy in 2008, as well as a hysteroscopy with D&C. The bowel surgeon suspected Endometriosis but I was not told. I was simply told after the hysteroscopy that no reason for my symptoms could be found, and was fobbed off with a Mirena coil. This was agony, and made my cramps worse. It also did nothing to stop my heavy periods, and by this time I was pretty anaemic. By 2011 I was fed up, and demanded a second opinion. I had laporoscopic surgery in April, as I was told the new consultant felt it was Endometriosis. During the surgery, they excised Endo from my bladder, bowel and unterosacral ligaments. After the surgery I still had symptoms, including pain, diarrhoea, fatigue, nausea, and swollen glands. I also had three episodes of agonizing pelvic and back pain that crippled me it was so bad. Each time I got sent to A&E in an ambulance. I could not walk,or even move! I was given Tramadol, Codeine, Diclofenac and Oromorph, as well as having physio assessments, and being kept in overnight. I was sent home on crutches. In December I had more surgery. The plan was to remove more Endo. However, when I came round, the surgeon said it was more complicated, as I have scarring to my right uterosacral ligament, and it looks like there are nodules of Endo deep inside this. Yet more surgery is due in March this year, to excise this.
Meantime, I simply feel dreadful. Every day I feel tired and run down. I can sleep at night, but wake up still feeling fatigued. I ache constantly like I have flu, and my glands feel sore. This is worst in the front of my neck, under my armpits and behind my knees. I also have pelvic and lower back pain, and pain at the base of the back of my neck. I feel feverish, going from hot to cold a lot, and my skin gets clammy. My hands and feet are constantly bluish-white, and freezing to the touch. If I try to warm them, they go red, and really throb. I do not think I have a temperature, just get shivery. When I feel hot, it is not in the usual sense, it is more of a heated ache - my body and limbs feel burning and achy, and it passes in waves. I also feel most tired at this time. I still get sinus infections, and currently my ear and nose feel blocked. My tongue is always coated and slimy (whitish), and I have slime at the back of my throat. The area of my face under my eyes, where my sinuses are, feels tender and hot to the touch.
I feel like a complete mess. I am tired and achy, and my doctors are useless. They just fob me off with antibiotics. They never offer diagnoses, just saying I'm "prone to infections". In the past they used to do blood tests for anaemia and the like, but now don't seem bothered. I have to demand assistance, and had to demand the second opinion that diagnosed my Endo. Otherwise, I get no help at all. I am fed up, and want to understand what is causing my symptoms, and what I can do about them. Please help. Scootee.
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