Newbie support needed 😟

Hi all, I'm new here, I wanted to find somewhere I could get some advice as I'm not sure what to do!!

Anyway, I was diagnosed with endometriosis when I was 21- had the symptoms for around 3 years prior to a Dr checking for endo, whether I had it this long or if it was all to do with my contraception I will never know. Anyway, had the surgery at 21, it was on my bowel, bladder, ovary and everywhere inbetween. I had zoladex and letrazole for 6 months and I'm now 26. I have been having similar pain, some random spotting- which I haven't had since starting cerazette, now got the IBS type symptoms which I had before, lots of bloating and pain associated, diarrhoea followed by sever constipation a within a 48hr period! I'm not sure if it has come back and what to do about it!! I have an appointment with my gp next month, not sure if I should push to go back to gynae? I know the only diagnosis is surgery, and I'm a bit worried about having unnecessary surgery! I was told for 3 years that the pain was all psychological, so I'm also nervous about bringing it back up as I'm embarrassed I will be called a liar again!

My question is, how did you know it was back? Any advice I would really appreciate!!! Sorry for the long post!!! Thanks all xx

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4 Replies

  • Morning Ayesha89, I really do hate it when doctors make u feel uncomfortable and basically say it is all in your head!!!! You know your own body, you know when you r in pain! I had pains from 13 years old then was put on the pill for 7 years that charmed the pains for a long time so I wasn't diagnosed until I was 21, I will never know where it was endo pain I had when I was young but I suspect it was! Anyway, i have had 3 laps, all confirming endo, I used to just call my gyne myself and explain I needed an apt asap, it did take a while to get to see him but it was quicker then waiting to see doctor and then be transferred! Hope you feel better soon x x

  • Oh thankyou, not just me then?? Even my partner started believing the doctors that it was all "stress" causing it!!! The pain isn't as bad as it was last time, but as there were possibly so many factors that could have caused some pain before I never knew exactly what was endo or not! Gynae have discharged me completely 4 years ago so just have to go back through gp, which I don't mind! I'm worried it's back as I we haven't had children yet!! 😔 x

  • No its not just you! I have felt so much better and more proactive since joining this site and interacting with people who actually get it. I will be 26 in December and its always at the back of my mind if I will be able to have children. GP's I feel give very limited support surrounding this and endo as a whole. There are success stories out there, that comforts me greatly. I think you should definitely push for another referral. I will be doing the same at my next apt - and to see someone with a more extensive knowledge of this disease. Please don't be embarrassed and allow them to make you feel its all a lie. I've been guilty of it, its hard to keep pushing, really hard! I go in phases where I want to fight and then I want to give up. But I would like my own children (one day hopefully) to know how determined I am. Have a great weekend x

  • After your second surgery, did you have to have the hormone therapy again?? I had 6 months of zoladex and letrazole after my first one! We're planning our wedding for 2017, and if I have to have it again in worried about the weight gain, I gained 2 stone last time I had the zoladex!! X

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