Endometriosis UK
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15 years later and finally a diagnoses...hopefully

I'm 30 years old and have been battling with the nhs for 15 years now. I've had a laparoscopy x2 and multiple scans. Currently waiting for my 3rd laparoscopy following a scan that picked up endometriosis, an ovarian cyst, 2 significant fibroids along with multiple smaller fibroids making my uterus enlarged. I also have varicose veins over my uterus. I'm in constant agony and bleed really heavy despite having the mirena (my last option of hormone treatment) if my bladder becomes too full the pain hits, i can't xercise as the it flares up, it is affecting work now and working as a midwife my shifts are long and stressful, I struggle to get through them. I'm just after some advice really; meds, diet etc pretty I've scarred my belly for life with hot water bottles lol 15 years of this I'm beginning to feel quite depressed with it too, I'm noticing my behaviour and attitude is also changing. Any advice would be amazing as I'm at the point now where I wouldn't think twice about a hysterectomy

1 Reply

I understand completely, the amount of jobs I have lost because I was bleeding so heavily and was in so much pain I could not get out of bed let alone attend work. Mine started at 14, pain from my belly button to my knees and bleeding so heavily I would go through extra super strength tampon and super strength pad every half an hour and sometimes every five minutes. Nothing was diagnosed until I was 39 when I was told I had PCOS. Again nothing was done. Over the years I was given the pill and after being on three or four that were subject to problems that I had to change I refused anymore. The mirena coil made me pile on about four stone in three months so I had that removed. I finally got my GP to refer me to a gynaecologist when I was 42. The endometrial lining of the womb was four times what it should be. They started to say I had a fibroid, then that disappeared! I had an endometrial ablation but it did not work. Within two months I was bleeding heavily again! Gynae refused a hysterectomy at that point. March this year I got a new pain that seemed to be left ovary and was constant. Whilst in the gp surgery I also started bleeding when I was not due. CA125 blood test was done and suddenly I have GP phoning me at home saying it is raised and I am being fast tracked back to gynae oncologist! After scans and a ct scan I was told I did not have cancer but I had very large fibroids. He was lovely and after going through the options I pushed for a hysterectomy. Best thing I have ever done. I started hrt three weeks later and I needed that because I was very tearful and very grumpy. Sorry about the long reply but I felt I needed to explain the background. Gynae were not willing to perform a hysterectomy so hopefully if that is what you want you will get it, but I needed a serious scare to get one. I am 45 with no children by the way. Hopefully you will get some help very soon


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