Endometriosis UK
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I was in my early teens when I realised the pain and heavy periods were not normal,and was referred to a gynocologist there wasnt much about at that time in the form of treatment,but when things got really bad was given a D&C,but by the time I was 25,I was one of the first patients to have a camera put in to see the effect of Endometriosis,I had a hysterectomy.Thought at last all my problems would be gone,then started having problems within my chest area,again went through a battery of tests,but they didnt do a breast screen because I wasnt in the right age bracket and as far as they were concerned what I was suffering from wouldnt be relevant as in all their studies I would be much to young,so was given hormone treatment,which did cut the pain down,and as the years went by,was put on various hormones.Then started getting other pain and numbness in the legs,then I lost my vision in the right eye,immediately they thought I would need other forms of hormonal treatment (not good with names) when they didnt work,I was given other tests and found to be suffering from M.S. I have lived happily with this for the last 20years but it changed and became more acute,then I had my first breast screen,and they found tissue that shouldnt be there,so had treatment for that,by this time I should be menupausal,and they gave me the relevant hormonal to help me,but just recently in my late fifties started getting a pain in my side,(any pain now is put down to M&S) but this was like a stitch,anyway I had a chest x-ray,and basically I am facing having a mascetomy,no idea if it is my old friend endo still hanging around.No one seems clear on this,but at the end of the day,my feelings are that it is probably.You are given a deck of cards in life,but mine seems to be stacked against me, and I often wonder if I was a teenager now and just being diagnosed with Endo would my life be so differant with the modern approach, and they would have got Endo under control,and my body would not have been worn down and I wouldnt be still living with the aftermath of Endo as I reach my sixties.

4 Replies

When you had a hystorectomy did the do a full hysto or did they leave your overies ? If they left your overies then yes it could be endo still,

If they took everything , was you on HRT then ? If not then you should have already had a menopause ? This is very confusing? I know it can sometime come back with a full hysto, but usually only if they couldn't remove all the endo, nowadays they give you a lap first to diagnose it, and it can spread into you bowel ,bladder, liver, and other organs and if they didn't spot this then , then it could still be endo, with all the hormone you have been given as well feeding it.

I have I'll hysto and part bowel removed to get rid of it, and on a low HRT as only 40yrs its a gel so I can control it myself, it's only been a year in but I feel so much better.

I will keep you in my prayers



Hi Thank you for your reply,yes I kept my ovaries,but didnt really go through Menupause,I was on so many hormones,I dont think my body knew what was happening.I am sorry to hear you are going through it,but keeping fingers cross that you are on top of it.I think if I had endo now,the treatment would have been completely differant,up till I was 25 had 40 D&C which was there way of treating of it back then/



I'm so sorry to hear you have had to suffer so much for soo long! I really do hope that whatever they find is causing your pain is easily treatable and you can be pain free again soon! It still amazes me how little they now about this disease!

I was having a conversation with my mum (who is 71) last night about it possibly being hereditary (I have it and my sister thinks she has it and is in the process of trying to be diagnosed) and she was trying to figure out which side of the family it comes from because she had never heard of it before I was diagnosed and it became very clear that she wouldnt have because when she was the age I was when I was diagnosed (about 50 years ago) they probably didnt even know it existed and like you said werent able to do a lap to diagnose it!


Hi Madhatter,I have often thought that endo could be linked to other things,but when I asked my specialist,all he can tell me it suppresses the immune,but like people who have migraine that is linked to Arthritis,as soon as I had a Hysterectomy,I started a new range of symptoms leading to being diagnosed as having M.S,but it would be nice if people could find out if it is linked crystalgirl


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