Previously and again currently suffering ... - Endometriosis UK

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Previously and again currently suffering from Endometriosis

Kjw130384 profile image
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Hi. About 5 years ago I was told I had endometriosis after suffering for about a year. Because of my age the doctor refused to believe there was something wrong but I kept pushing for scans and once I had the final scan they finally believed me and it was shown I had a cyst on my ovary which was endometriosis. Again the doctor was unsure about letting me have an operation to remove the cyst because of my age but my period pain was so intense i was on morphine every month. So I had the operation which was successful and no more symptoms. The last few months I have had pain in my left ovary area once or twice a week and now especially severe during my period. I have always suffered with bad period pains but I can tell the difference between a period pain and an endometriosis pain. I am to go to the doctors tomorrow to see if I can have scans again etc but I just wondered if anyone had had a similar thing happen where they had it, had an operation, it went away and then came back. All I've ever wanted in life is to be a mum and I fear if I have to have another operation this one may not be as successful. But at the same time I don't think I can continue with this pain. It is also giving me low mood, and I already suffer with bad anxiety and depression and I feel exhausted all the time. Just looking for tips and or advice on how to cope this time round. Thank you xx

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GrittyReads profile image
GrittyReads

Are you in the UK? If so, you need to get yourself referred to a BGSE Centre, - centres of Specialist Endometriosis assessment and removal. Also, what sort of scans did you have? My understanding is that only a laparoscopy can firmly diagnose Endo. Even then it takes Endo specialist gynaecologists-surgeons (ie: the ones at BSGE centres) to find, identify and surgically remove all endo - in all its forms and hidden-away places. General gynaes just don't have the necessary, specific 'endo' training and skills. Please read the posts on here by 'Lindle'. Hope this helps.

KSvedenmacher profile image
KSvedenmacher

I had surgery 11 years ago after suffering from endometriosis for 16 years. My surgery was done in Canada where I lived at the time (and by an endometriosis specialist) and it was successful in the sense that I was completely pain free for at least three years after the surgery. I was able to have two children since the first surgery and I managed the pain after my second child with the pill. Recently the pain has gotten bad and even the pill is ineffectual. I am scheduled to have a second operation at a BSGE clinic. I definitely agree with GrittyReads that you should try to get a referral to a BSGE clinic as the surgeons there will be able to treat you much better than a general gynae.

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