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Endometriosis UK
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Feeling brave

Morning all I'm feeling very brave today so I thought I would share my story . I will try to keep it short but there is so much to tell .

After having constant gyne problems and IBS from the age of 19 I was lucky enough to have two lovley children . At the age of 25 My daughter was born 6 weeks early after my plastenta ruptured. Nearly lost her due to that .my son 3 years later but that was ok . After that problems got worse in the downstairs department ,as usual doctors didn't know what it was , I never even heard of endo before.? I suffered in silence untill the age of 38 , I was so badly fatigued , brain fog and feeling lifeless -it was a constant battle with myself to get up each day along with prolapse of the bladder and bowel .finally I got to see a private gynecologist .At the time I didn't even know what a BSGE dept was so didn't check and no advice was given ,the consultant put me on a number of tablets and left me for 6 weeks before operating , during this time I though I was dying I was so ill . I came off the tablets and I finally made it through a 8 hour surgery.

For the surgeon to apologise to me after surgery as he though he would find nothing ,was a breakthrough and I will never forget it . However I was almost completely covered in endo down my left side so bad that it was restricting my blood supply .it had also pushed and distorted my bladder and bowel which is why it prolapsed.

After the op it was like waking up for the first time , I felt amazing . Six months later I was in for a hysterectomy but they left my overies , why I will never know .


5 years later unable to pinpoint what was wrong but I suspected it was back -I went to a different surgeon who was a registered BSGE . I ended up being operated on by two surgeons down my left side again this time it also was on the bowl and upper stomach area ,after removing the left ovary , more endo, scar tissue etc .. The surgeon that operated this time assured me that he had it all and at 6 months post op . I have that pain back again in my right side , this time lower down in the buttock bowel area

I have been trying to get reports from all surgeons as I need to know what they have done , this I am finding difficult especially the private care one . I don't think he should have operated on his own to remove endo .

Even though I have continued to work full time over the years I know that I will probably be on my last year of work now at 46 due to this awful disease, I feel so much of my energy has been put into keeping myself upright each day over the years more than having energy to focus on the good part of life !!! still , I refuse to let it beat me even on my really bad days . If you are all still reading Thankyou and sorry for going on .I wonder even if the surgeons / consultants fully understand the whole effect it has on our lives . for everyone living with endo , you are all amazing . This forum has given me strength to go foward knowing I'm not alone with this awful disease. It has also helped my family to understand it better so thank you . Sending lots of luck and hugs to everyone suffering X

1 Reply

Just to let you know, I have read this and you're never alone when you're on this site. Everyone understands and can help. Keep going, even on the days when it feels really awful. Xx


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