Helen’s Story


In April 2006 my stomach kept bloating up and when I went to my GP he told me I was a due a smear. It came back abnormal and I went to get the LLETZ done. They told me that the cells were very high up in my cervix so I needed to get it done with a general anaesthetic.

I felt fine after the procedure, until that evening. I remember that I didn’t go to the toilet for a pee for a long time, even though I’d been drinking quite a lot of liquid, and my stomach felt really bloated. The next day my stomach felt really bloated, so I contacted the gynaecologist where I’d had it done, and they told me that there was no way my symptoms could be due to the LLETZ and told me to contact my GP. So I went to my GP a week after the procedure who also said that my symptoms had nothing to do with the LLETZ. However he could see that my stomach was really bloated. I had also put on weight, two pounds within a week. He referred me to a urologist who did some tests. They found that I had white cells in my urine although my bloods and kidney function were fine so they discharged me.

I kept going back and forth to the doctor and the hospital over the next few months. I found out I had b12 deficiency so I started having b12 injections. I was gaining so much weight. I think I put on two stone in two months, even though I had lost my appetite and was hardly eating anything. Nobody could figure out what was wrong.

In January of the following year I started getting tingly sensations in my feet. I was sent for some tests. A few months later I couldn’t feel my legs from the thighs down. They were completely numb as if I’d damaged a nerve. Two years later the tingling also started in my hands, and arms up to my elbows. I also began having problems with my eyesight and had to give up driving because I could hardly see. I was getting out of breath really easily and having trouble walking.

I had nerve conduction tests on my hands and legs. I went back every six months to see the specialist. He told me that the only explanation for the numbness and tingling was b12 deficiency. However by this time my b12 levels were completely fine, and when I’d actually had the deficiency I’d never had numbness, so that explanation didn’t make sense to me, and he was a bit confused about it too, and sent me for brain scans.

A few months later I was diagnosed with a rare form of mitochondrial disease. I was given B2 tablets and at that point I started to get better. My eyesight improved and one day I even walked half a mile. I thought okay, I’m cured, but then I started to deteriorate again, and the problems with swelling and water retention remained. I’ve got a really high heart rate but all my tests are coming back normal. I don’t know what’s causing all the swelling and bloating all since the day I had these cancer cells removed..

I kept going back to the GP who referred me to various specialists for my problems. I’ve gone downhill since the day I’ve had the LLLETZ done. I’ve not been right since. In the last six months, I’ve now got tingling in my hands,

I go to the GP and they’ve got no idea and they just send me here and there. I don’t know how many times I’ve been to the doctors. At one point I went to a different specialist about my nerve damage, baffled at first he thought I had MS, and he was just so confused and I remember them having meetings about me because they didn’t know what was wrong with me,

I went to my GP a few months ago as I got really bad. My stomach and legs swelled up. I was out of breath, and I could hardly walk. The GP told me, ‘’oh it must be down to your mitochondrial disease. You better contact your specialist.’’

I contacted my specialist again, and she’s always said to me ‘’half your symptoms are not down to the mitochondrial disease. You need to go to your GP, because you have another condition and I genuinely don’t know what it is.’’

My specialist did tell me that this mitochondrial disease, can come on after having a general anaesthetic, but this doesn’t explain the nerve damage, swelling and water retention which are not due to mitochondrial disease. Doctors have never been able to explain to me what’s going on with that but it all started the day I had the LLETZ.

Recently I’ve had tests, and they say there’s a lot of changes with my nerves and I’m getting worse. My lungs have been tested and I have very bad lung function. I can’t walk far as I get very breathless. I’ve got really bad balance, I can’t walk downstairs without holding on for dear life as my balance is really awful. Sometimes people must think I’m drunk because my balance is really bad. Recently I began to get a pain in my hip that I thought might be connected to my ovary. I’ve put on 5 stone since the LLETZ even though my appetite is extremely poor. I have had problems with constipation, and so I had a test on my bowel done, but they all came back clear. To this day I still have trouble passing water and issues with mild incontinence. I can’t work because of these symptoms.

I don’t think I’ll ever get better. I’ve had nerve damage. I’ve been completely numb in my legs for ten and a half years, and it just didn’t go away, my legs feel like lead, very very heavy.

I need help, but I just get passed from one doctor to the other. I worry that I’ll get worse, or even pass away. I feel that bad some days.


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