Advice needed please! I have been suffer... - Endometriosis UK

Endometriosis UK

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Advice needed please! I have been suffering from really bad abdominal pain for ages now, with heavy bleeding loosing large clots,

ycooney profile image
10 Replies

painful sex, crippling abdominal pain during and immedialty before period,also feel like I need to wee all the time as if something is pushing on my bladder....had urine test and sti tests all came back negative. I was reffered to a gyno and had appointment in May 2014..who said she thought I had ENDO..she sent me for a pelvic ultrasound and a transvaginal scan which I have been for today...the ultrasound technician said that he couldnt find anything to worry about and everything seemed fine...any ideas what it could be if it's not ENDO?

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ycooney
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whisperenergy profile image
whisperenergy

Hi, I think I am right in saying endo doesn't usually show up on ultrasound scans. It certainly didn't on my scan and was only diagnosed with a laparoscopy. I think they do the ultrasound to check that there is nothing else going on as well such as tumours etc. So it is quite possible that it is still endo that is causing your problems. I had the same issues as you described and I had endo on my bladder and lots of adhesions joining organs together. Do you see your consultant soon?

ycooney profile image
ycooney in reply towhisperenergy

Hi thanks for your reply x I see my consultant on 26th Aug for scan results...but I have already been told there is nothing there...also I forgot to say that when gynocologist did internal she said I had a bulky uterus! I have been admitted to hospital before with severe abdominal pain and had scans etc before which were all clear...I have 2 boys both born via emergency c-section and I have read that c-section's can cause endo..x

Buttons85 profile image
Buttons85

I am in the same place as you. I had Ün normal cell removed and since then I have had loads of pain which I can't control.

I has to sti test came back neg

Blood test neg

Cat scan neg

Outa scan neg and other test which I am so fed up now as I know my body my mate her mates got this and they both think I have it as I am the same as her. I just want to finally get the lap test and it should give u all the answers u need I am hoping for

ycooney profile image
ycooney in reply toButtons85

Thanks buttons85 for your reply...it's so frustrating isnt it? all this pain and discomfort and you have to wait forever for the tests...I am going to go to my gp's next week and demand he refers me for a lap x

whisperenergy profile image
whisperenergy

ycooney, I take it you haven't had a lap as of yet? That is the only thing that will really be able to tell you if it is endo and that will hopefully be what your consultant will talk to you abt along with possible hormone treatments, but I wld push to get a lap. That seems a long time to wait to see the consultant, is it possible for you to call his/her office to ask to take a cancellation if one comes up? Buttons85, so sorry to hear you have been having such a rough time of it too, I saw your sisters post yesterday. Endo can be plain miserable :( You know your own body so I wld saw just keep pushing to get a lap as that is the only thing that will really be able to tell you if it is endo.

Buttons85 profile image
Buttons85

Yeah it really is 2bh i aren't deal we'll with this new life of mine, I never thought people live like this and it's so hard to adap to. Just wish doctors we're more help and list ion to you if u get me x

whisperenergy profile image
whisperenergy

Oops cross over posts there! Ycooney, I think it is only your consultant that can give the go ahead for a lap but maybe your gp can get a message though about how much it is affecting you so maybe you could get seen sooner. I hope so for you, the waiting is just awful and having to deal with the pain every day is just horrible. Wishing you a good nights sleep xx

ycooney profile image
ycooney in reply towhisperenergy

Thanks and a good night sleep to u 2 xxx

Hey, just because they can't find anything on the ultrasound, does not mean that you don't have endo. I recently had another scan. I know that I still have endo remaining from my first op. but they were unable to remove it (location I believe was the issue), however, over the Easter period I began experiencing very noticeable symptoms that I knew was Endo related. I had painful sex, abdominal pain, particularly after I urinated and severe nausea and fatigue. I know my own body, and having endo before, I know what happens to my body when endo symptoms are around so when this doctor tried to say that "there was nothing there" I was shocked. I pushed for an internal because there was no way that I was going to be fobbed off, especially around exam period. To his great surprise, he exclaimed that it was "cloudy" inside....=/

Might be best to see the doctor who referred you again to discuss a potential lap. Best of luck, I hope that you are able to resolve your situation soon. Are there any endo specialists around where you live? It might be a good idea to arrange to see a specialist as they know what they are looking for. =)

whisperenergy profile image
whisperenergy

Yep I know exactly what you mean Buttons85, my gp is great but even with her it took several visits before I was refered to gyne and then it took 3 months before my appointment came through. Although reading some ladies experiences on here it sounds like my experience has been quite quick compared to some of them. I think it is important to find a good gp, someone who has the time and takes the time to really listen to you. Learn all you can about endo and it's symptoms. When I started to do my own research I realised I had so many more symptoms than I initially realised, I just had no idea that they were all linked and so hadn't mentioned them to my gp which maybe made it harder for her to know what it might be

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