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Endometriosis UK
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Are you being treated but not diagnosed?

Hi everyone. I have not been on here for a while as I have been trying this past year to focus on other things in my life, however the past few months I have been really suffering again and feel down. I was just wondering how many of you are being treated for endo but have not been officially diagnosed with the condition? I went for a private lap about 2 years ago where I was told that it looked suspicious but not text book endo! I then couldn't afford any more private care so went to an NHS hospital and saw a consultant there who didn't have any pictures from my lap or any info about what the other dr had said and told me that because I had already had one done she would not do another but looking at my symptoms she will treat it as endo anyway. My main problems occur mid cycle and I think are linked with my ovaries. I am just concerned that they are treating symptoms but don't really know what is wrong. I would love to hear from anyone else with a similar experience. Thanks

2 Replies

Hi Katt

I had been suffering for years since I first started having periods and constantly got fobbed off as "it is part of being a woman, you just suffer more than others"...and that inc a Gyno in Kettering when I lived near there!

However a couple of years ago I saw a Gyno at Newark who I explained all my symptoms to and she said from what I had told her that she was happy to diagnose me as having Endometriosis. She said that a Lap would 100% confirm it, however she did not want to put me thru that as I already had a big scar and so did not want to upset the scar tissue there as that could cause even more pain. She said to try Mefenamic acid for the pain during my period as not want give me the hormonal drugs which bring on menopause symptoms as I still young and not had children yet. She then discharged me.

Since then I have not seen anyone else, nor had anything else. The mefenamic acid worked a little but not much and I found it too big to swallow (I struggle to take tablets). I now am not taking anything as I am trying for a baby.

I have been back to my GP recently as my symptoms were flaring up along with some new ones and the GP refered me to a gastroenterologist! Who says I have IBS but my endo is not causing the IBS symptoms cos endo doesn't do that! ..I told him but it does!He was not interested. I am going to go to my gp and ask to see a Gyno again and perhaps have the Lap as I just want to know what I am dealing with, esp as I am trying to get pregnant and been unsuccessful so far.

I hope that helps to answer your question. Perhaps ask your GP to see a gyno again and have a Lap. As they may see something more substantional this time around.

Best wishes x


I didn't get diagnosed till 2years ago just thought I was ok till got bleeding after sex and a lot of pain hadn't used condoms really before and just didn't get pregnant but now I know why, you need to get a diagnoses to be able to move on and get the right treatment for you


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