Allergies, chemical toxins & Endometriosis

This post involves gynaecology too so it is esier for me to write the same comment to put on both areas. But please bear with me in reading through it as I feel sure everything is connected.

I am 53yrs old and all my adult life I had horrendous symptoms at mid cycle then gradually for most of second half of cycle when I was completely struck down by a sort of all-encompassing brain malfunction - blurred vision, dizziness, complete short term memory loss and blankness so bad that I would not be able to recall even my own address, confusion, disequilibrium and overwhelming head pain and fatigue - I was utterly incapacitated by it. I also started to be aware of a very pungent smell all around me at the same time that no one else could smell. All of this was put to me as a severe and unusual hormone imbalance, although years later I was to find it diagnosed in my records by my doctor as the severest PMS he had ever come across. That was a condition I never suffered from and these symptoms would actually ease dramatically before a period. I took home ovulation tests and they corresponded exactly with the mid cycle surge.

I also had allergies (pollen, dust mite & feathers) and so many infections that they became continuous – I was on antibiotics every 2-3 months for 20 years. Against the background of terrible symptoms in response to ovulation, I started having obvious gyny problems in my mid 30's. My cycle was very short at just 21 days, which was bad in itself as symptoms came round so quickly. I'd have all the mid and second half cycle horror then my periods, although only short, got very heavy, intensely painful as though my insides were being pulled out downwards, with huge clots. This would then be followed with what I called 'brown sludge' (a bit like a normal thick discharge but brown) for several days after and was followed by severe back pain across the lower back and into the hips. This was positional in that it was reasonably OK if I was in one position but moving was extremely painful and for a couple of days I would crawl rather than stand if it was possible. This was diagnosed as probable endometriosis and I was given Danazol but no laparoscopy at that time. My doctor considered that I would ultimately need a hysterectomy and BSO with HRT, which he felt sure would cure all my health problems. Around this time I developed an intolerance of alcohol, although I had always enjoyed a gin, and could no longer take hay fever medication as it made me dizzier.

I generally felt so ill by then, though, that we decided to try for a baby since we would only have this chance. We hadn’t started a family as I had always felt too ill, but encouraged by the fact that I could then have the hysterectomy we tried. At 40 yrs old I conceived immediately and had a fantastic pregnancy, felt unbelievable well for the first time in adult life - extremely high energy levels, no pain and most importantly for me - no mid cycle symptoms. But the symptoms returned after pregnancy with a vengeance. We decided to go for fertility treatment and went on Clomid, when my 'queer head' symptoms mysteriously vanished temporarily (I have now discovered that this drug 'tricks the body into thinking its oestrogen levels are very low'). Then we went for IVF. I had a dye lap to check the tubes were OK and a thorough search was made for endometriosis but I was 'clear'. Finally after unsuccessful IVF I had the hysterectomy and BSO that my doc said would cure all my problems. Before surgery I asked the surgeon to again have a thorough rummage in my insides for any endometriosis and again declared clear with uterus and ovaries completely healthy. I went on HRT.

I then became so desperately ill with a severe ear infection developing after a surgery on my nose to straighten a bent septum, done in an attempt to clear the worsening infections. (I had 15 colds in 12 months after the hysterectomy). The same horrific symptoms I had previously experienced prior to the hysterectomy became continuous and since I could no longer have PMS they were largely ignored and assumed to be due to the infection. I truly thought I was dying.  There was no more could be done for me and I went on for 3 years not daring to see a doctor.

I stopped taking HRT as I instinctively felt it was bad for me.  I developed severe cyclic back ache in the same place as all those years before, but only for 3 days or so in every few weeks and had very bad constipation at the same time. But I felt so ill that I just took that in my stride. I was completely pelvic-pain free in between. Then I got persistent burning sensations on my back all the time (couldn't wear a waste band or bear bed clothes on my back) and what was suddenly absolutely excruciating cyclic abdominal pain which had me completely immobilized with my abdomen rigid as a board. I suffered this 4 times then knew I had no option but to seek medical help.

I had ultrasound and a large pelvic mass was found. A CA125 test came back at ‘well over 1000’, many times higher than the gynaecologist had ever known and I was prepared for cancer. It was thought to be an ovarian tumour and cyst even though I had no ovaries - a remnant could have been left behind. But surgery found advanced endometriosis on my bladder, intestines, bowel and back with a melon-sized rupturing chocolate cyst. The path report confirmed it as entirely non-ovarian in origin. All of this grew from nothing in just 4 years on HRT. It could not all be removed and some remains on my back and I had Lupron to shrink it. However, I am still getting increasing cyclic symptoms 2 yrs after and can tell it is still growing.  

The doctors and gynaecologists are baffled here (UK) as to how I could have grown it from nothing post menopause with such a high CA125 and I am again not getting any treatment or follow up at the moment.

I have been reading with interest reports from US Endometriosis specialists researching the possible causes of endo and the apparent links with the immune system, allergies, infections, chemical intolerance and auto-immune conditions including allergic reactions to a woman’s own hormones. The horrendous symptoms of brain malfunction I experienced on ovulation, and which were utterly horrific on HRT, match exactly those described under chemical toxicity. I feel so sure I could have had an autoimmune allergy to oestrogen. Could this explain how this aggressive tumour grew so quickly and from nowhere? Is it possible that my immune system was just so overloaded with trying to fight off permanently high ‘toxic’ oestrogen levels being pumped into me, but failing, had no resistance at all to the ear infection which seemed to rage through my head unchecked, and that free toxins, the very oestrogen that endo needs to grow, sought out a dormant small piece of endo (that had given me symptoms years before) and was triggered into rampant growth. Perhaps my immune system had absolutely nothing left with which to even start to address the antigens it gave off resulting in such a massive CA125?

Can anyone make any sense of this at all?

Apart from the fact it was me who lost over 20 years of my life to this I do find it fascinating and feel now that I have to get to the route of what caused it. I also realise that I am not out of the woods as I still have it and it seems that postmenopausal endo is quite rare and potentially dangerous being apparently linked to other autoimmune diseases and cancers. From what I read I’m not sure the Lupron would have done any good as it sounds as though it only works if oestrogen is being produced by the brain to ovaries route – but that I may have had some bone loss from it. I am arranging a bone density scan which I can access without a doctor. I am trying to lose weight as I am 12 stones and understand fat cells produce oestrogen.