Endometriosis UK
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Totally Confused!

Ok ladies so here's my story but to be perfectly honest I don't even know if I belong on this site!

So starting from the very beginning at the age of 20 I went to my GP because of excruciating pain in my lower right abdominal area. After a series of tests and an ultra sound I was told I had a small cyst on my right ovary and I would be referred to a gynaecologist and given painkillers. However there seemed to be a "mix up" and I was never referred. A year later I was still at my GP complaining of the pain. Eventually after going through all the tests from the precious year and MRI scans they had came to the conclusion I had a dermoid cyst on my right ovary and a cyst on my appendix so surgery was necessary and I went on the waiting list.

8 weeks ago I went in for surgery understanding that it would be open surgery to remove 2 cysts, my right ovary, my appendix and a part of my bowel. After waking from surgery they had actually removed the 2 cysts and my right ovary but decided not to touch my appendix (which I found rather strange to be honest) and they discovered I had endometriosis. However it seemed whenever I asked about the endometriosis no one could tell me anything about it. I returned to my GP to ask her for information about it and she said if I stay on my contraceptive pill for 3 month at a time then I shouldn't get any pain but my pain isn't when I'm on my period, that seems to be when I'm in the least pain!

I know it's only been 8 weeks and my body is still recovering but it's the exact pains I was getting before. I'm constantly tired and run down and when the pains aren't full on there's always a dull pain there. I suppose really I just don't know what the next step is? Or if its even endo I'm suffering from? I'm only 22 and I just feel I can't live my life the way I should be because of it.

Thanks for reading and I hope someone can give me a little help with this x

4 Replies

Snap! I have constant pain which feels like it builds and then is relieved by my period. I was hospitalised twice last year, and both times they sent me home with painkillers :( I was referred by my GP to a gastro surgeon who referred me to the gynae. He agreed to do a lap but I am now on the waiting list - and I'm looking at November for the op at the earliest :(


Thank you so much for your reply Bonnie. Sorry to hear you are suffering the same! After my op they told me I wouldn't get the pains but they're still the exact same. I'm just don't agree with the amount of painkillers and I'd prefer not to be on them all the time!

After reading everyone's stories I'm beginning to think its not endo I have as I don't seem to have the same symptoms and I've never been spoke to about any of the treatments for it x


Demand a referral back to the Gynae at the hospital......don't give up!! I am constantly in pain......there is obviously something wrong....and cysts do come back. You might have to go through a series of different tablets/treatments etc, but don't give up. I am 44, and have been fighting since the age of 16 (started periods at 11)



What are your symptoms hun? Each woman's symptoms vary- and if they found endometriosis then you have it! It sounds as though your surgeon & GP are extremely naive where endo is concerned. It isn't only associated with your periods and putting you on the pill for 3 months at a time will not magically cure you- there is no 'cure' for endo. If it was found then they should have discussed treatment with you, or referred you to an endo specialist. The endometriosis needs to be surgically removed, combined with hormone therapy (like the mirena coil, the pill or other hormone drugs that supress regrowth), and painkillers to help with the pain. Without those treatments the endo could get a lot more serious and spread to other organs, cause more pain and scarring and possibly infertility.

Dull, constant pains and extreme tiredness/lethargy are symptoms of endo. I would ask to be referred to a different hospital, to someone who is experienced with endo. If your GP is not listening see another GP. You have the right to ask to see whoever you want, so I would google 'endo centres' or 'endo specialists' in your area and ask to be referred there. Be persistent now while you are young.

Keep us informed x

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