Advice: Hello everyone I'm new to the site... - Endometriosis UK

Endometriosis UK

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nene951 profile image
4 Replies

Hello everyone I'm new to the site. Hope your all ok. I was diagnosed 4 years ago after many years fighting the doctors. Over the past year I've noticed so many changes for example I get bad nausea, I'm always so tired, bad bloating, headaches, changes in bowel habits just before I come on, pain during sex, constant spotting etc just wondering if anyone else has any of these symptoms? My doctor said my endometriosis is mild and won't be causing the symptoms so I'm waiting for my third laparoscopy ....... Such fun!!

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nene951
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4 Replies
Marion78 profile image
Marion78

I get headaches and feel tired as well and bowel problems too, it doesn't matter what stage your endo is you can feel extreme pain at stage 1 and no symptoms at stage 4. It all depends on where the endometriosis is situated.

nene951 profile image
nene951 in reply to Marion78

Apparently mine is in the pouch of douglas .... Never knew I had such a thing! Doctor just says my problem is that I also have Adenomyosis which is what causes the problems but I read so much about symptoms of endometriosis and I suffer from so many of them.... Why is it such a fight with doctors?

julieoc71 profile image
julieoc71

Hi Nene your symptoms are Endo related and I had the same in my twenties and thirties and I was finally diagnosed in my early thirties. Again like every woman on this site and suffering with endometriosis the doctors seem to take too long to make that initial diagnosis. This is so wrong even though I was previously diagnosed and had several operations including a full hysterectomy 8 years ago and I was ok until a year and half ago. Again I kept saying to the doctors that it the Endo scar tissue which was left round the bowel and still they didn't listen and I went through a year of test after test. Then finally last November I had an internal ultra sound and they found it has spread to my bladder and maybe even my kidneys. I'm having a laparoscopic in two weeks and then depending on what they find open surgery. I've got to the point that I'm treating the appointments like business meetings and recording everything and researching information. Your not alone Hun so anytime you want to chat please drop me a message. Take care. Julie x

nene951 profile image
nene951

Thank you Julie I am so sorry to hear your having such a difficult time it is so frustrating as we know our bodies and I feel like they can just assume they know best but they don't live with the pain and suffering daily. They keep saying there is nothing they can do as the adenomysis is incurable then they fob me off saying the endometriosis isn't bad enough.. Now I have cysts too so we shall see what the laparoscopy and hysteroscopy show up.... Keep strong x

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