Help !: Hi , I have posted on here before... - Endometriosis UK

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Help !

Jancey92 profile image
6 Replies

Hi , I have posted on here before but really am struggling to cope and need some advise , I'm only 20 and got diagnoased last year with endo after 2 years of pain , I had a laparoscopy to remove the endo so that hopefully the pain I was getting would decrease , this didn't happen , I am still in so much pain , and losing so much weight , I'm seeing a psychologist now about my eating but this isn't helping my pain , I'm seeing my consultant next week and just really don't know what to do , in so fed up with waking up every day with this pain and being stuck and painkillers everyday , sorry for the rant just no that people on this site are very supported

Thanks

Amy x

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Jancey92 profile image
Jancey92
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6 Replies
vicner profile image
vicner

Amy, I really feel for you with this horrible disease, and am sending you hugs. I think you have to go along to all appointments and tell them how it is. Unfortunately in my experience you have to keep on banging you head against a brick wall, until you find an expert who listens. Until then you need to stay ranting here, we are pretty much all in the same boat! Or have been till we found our one that listens. Hopefully things pick up for you soon. Xx

Samdoe profile image
Samdoe

Yes Hun hang in there, we all get extremely distressed with what we have to go through & face each day. Stay strong we are all here for you. I was told yesterday by my GP that I would have to go private to get help because the NHS will just send me back to her. She is my one who listens. I am 27 now & at 15 I would go to the drs for my late periods & pain & I would get lectured about unprotected sex often I wouldn't go back but that's what they wanted, you must make your voice heard. I know it's hard *hugs* xx

maeline profile image
maeline

The loss weight might be due to the painkillers. The pain is horrendous I know and to go to doctors who don't listen is heartbreaking ..

Take one day at a time , focus on the good things .

Take painkillers regularly and before the pain is too strong .

Write a diary about the pain and how you feel .

Take care ,

Jancey92 profile image
Jancey92

Thanks you for your comments it keeps me going knowing there's people like you to talk to , my eating really gets to me my mum and my boyfriend can't understand why I can't eat and get frustrated but that's only cos they care , I have an emergency appointment tomorrow so hopefull will get some answers just want y life back now and to wake up and feel well again

Thankyou

Amy xx

endoprof profile image
endoprof

Hi,

I really hope you're able to find some help soon! I have a few questions about your symptoms because I find the weight loss concerning and not--in large amounts--typical. Was the endo they saw on your bowels? Have you discovered certain foods bother you less than others or does it hurt to eat anything? What exactly causes you not to eat, meaning lack of appetite, stomach or pelvic pain after eating, nausea or throwing up afterward? I'm asking because it is not uncommon to have more than one thing wrong; I have Crohn's and Endometriosis and the former caused similar symptoms until it was under control. Of course, many have some problems with digestion, so that's not completely odd or anything but I just want to get more of a sense of what's going on in case I can make any suggestions.

Sending positive thoughts your way,

Melissann

Jancey92 profile image
Jancey92

Hi when I first started to get this constant pain my doctor refered me to see a gastro consultant, and he was 98%sure it was crohns , after I had lots of didferent tests done that showed inflammation , I then had a laparoscopy to make sure there was nothing on the out side of my bowel and this is when they discovered the endo , so they all jumped on the idea that it was endo that was causing me the pain , I had the endo removed and my symptoms didn't get any better infant they have got worse as I've gone on , this is why I am going back to see my gastro consultant today as they now feel that the endo was not the route cause if my pain and they feel I still have something gastro related , the endo was in the pelvic area , I find that eating makes it worse and this is why I have lost so much weight because its easy to not eat, I have no appetite anymore the pain I get now just makes me not want to eat , I think today when I got back to my gastro consultant I need to bring up how sure he wait was crohns , I hope your are getting better now

Amy

Xxx

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