Usual symptoms

Hello, I am very new to this area of health unlocked and was wondering if anybody could help me with the symptoms I have been having - in advance, please excuse the detail (thank god it's anonymous!) I had a colonoscopy last year and was diagnosed with IBS as everything came back normal. Since then, I accepted IBS was what I had and cracked on with life! I noticed around my period I would get very poorly, having to take time off work and cancel on plans I'd really wanted to attend. My symptoms would be horrible migraines, fatigue, achy body, sore stomach and diahrea about 8 times a day throughout these flare ups. When I was on my period, everything was heightened. I get brown discharge in between periods that can be heavy or light. My periods when on, are very heavy, I have even found blood clots in them too (I am so sorry to whoever is reading!) Pelvic pain accompanies the bleeds inbetween periods. I learned this could possibly be endometriosis so I came here to find out more! please tell me your thoughts and any advice or help is much appreciated! Thank you

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  • Best to go to your doctors, I expect they will send you for a trans vaginal scan. I had the same symptoms as you and that is what they did for me. I know I have had endometriosis for years but the symptoms got worse just recently and I thought it was because I was coming up to meno...turns out I have fibroids and Adenomyosis as well.

  • You poor thing, thank you very much for your help! I hope you get better (as better as you can with these conditions) soon!x

  • Have it checked out. Lots of people get a diagnoses for IBS and this is most of the time a wrong diagnose, vecause Gps dont reconise the symptoms of something else.

    Brown discharge could be something to do with cysts and they could burst and this brown colour is old blood.

    Write your symptoms down, all of them, go back to gp and discuss this.

    let them know when you have problems, when you experiencing it, why you have to call in sick. Do you have any numb pain, stabbing pain in the month? Are you on any medication? All things to take back. Our health is very important, get it checked :)

    Good luck

  • I second the above comments, but also suggest you chase up all the posts on here by Lindle, who is an amazing source of knowledge on Endometriosis. Also, check all the information on the 'Endometriosis UK' site (link at the top of this page).

    NB As far as I understand, if your GP sends you for a scan, that will be to check for cysts, as well as many other issues that could be going on in the pelvic region, in order to take care of them - or to rule them out if there is nothing there. However, my understanding is that an ultrasound scan cannot show actual endometriosis.

    So ... if you are told there is nothing there, that is not the end, so don't be fobbed off. For you to be then checked to see if it is endometriosis, or not, you will need to have a laparoscopy. If that is suggested by your GP - or you have to insist on one - there are centres that specialise in endometriosis that you have a right to be referred to. I don't have the link to these, but the details of them should be on the 'Endo UK' site, or you will find them in Lindle's post, or other posts on here.

    Sadly it is often the case that sufferers need to be more clued up on endo than their GPs. Keep on searching and browsing on here and you will find all you need.

  • Thank you so much for your reply, it means a lot!

  • PS There's actually a link - in the 'Related Posts' section at the top right of this page - to a post by Lindle. It is : 'How to find an: 'Endometriosis Specialist Centre'.

  • Def go back to the Drs. I had the same as you. For years they said I had ulcerative colitis and IBS but I knew something wasn't right as no med worked. I kept going back to Drs who kept giving me IBS stuff. In the end I changed Drs, saw a fab Dr who straight away thought I could have endo and referred me - best thing she ever did as I had a laproscopy last year which confirmed it.

  • I am in a similar situation. I went to docs last year with diarrhoea problems got worse, bloating and stomach tightness. Had colonoscopy and all was ok so was told I had IBS and have been on the low FODMAP diet since then. I thought there was something else wrong as getting stabbing pains in left side mainly and aches wrong back, down bum and down legs plus tiredness. I have had ultrasounds and Mri where they have found cystic structures but due to previous surgeries for something else in my bowel my General gyny is hesitant to do laparoscopy so not sure if it is endo or not. I am now on Prostap injections to see if they help and if they do then it is most likely to be endo.

    Agree with the other posts that you need to go see the doctors and persist if you think something else is wrong. Take care and hope you get some answers soon x

  • I'm sorry to hear about this, it's really horrible isn't it! Please can you tell me how you got your GP to perform specific x-Ray's/ultrasounds. I'm scared they'll tell me it's just IBS

  • Thanks, it is horrible, not knowing what the problem is is awful. I first saw my go who referred me to a gyny who has done ultrasounds and mri's and ca125 blood tests. From the tests the gyny found the cystic structures but also thought my symptoms were 2 fold so referred me to a gastroenterologist who did the colonoscopy which was fine and so he put it down to IBS. I am now wondering if the IBS symptoms are actually endo symptoms so waiting to see if these hormone injections help. Speak to your gp and after explaining everything ask if he can sort out a scan at your hospital or a referral to a gyny. Good luck X

  • Thanks for your help! I'll definitely ask to be referred or have scans otherwise it's so pointless x

  • I have recently been diagnosed with endo after having a laparoscopy and treatment in Jan. Similarly when I was younger I was diagnosed with IBS - in hindsight, with what I know about my health now (endo and PCOS) it may well have been all part of the symptoms. Especially as when they operated some of the endo was effecting my bowel (I specifically asked at my post-op and looked at the pictures!)

    When I went to my GP last year, I explained my symptoms and had an internal examination, swobs, transvaginal scan (that's were they picked up the PCOS) and blood tests and that's when my GP decided to refer me. They never tried to blame it on something else.

    As others have suggested, write a list of all your symptoms and hopefully you'll get a referral. Also there's no harm in asking for one yourself. You shouldn't have to keep struggling without knowing what's going on.

    Good luck and I really hope you get some answers soon. :)

  • Please can I ask how you feel? I usually flare up around my period. My eyes ache, as do my legs. I get horrific migraines and dizziness, hot flushes and sweats. I go to the toilet about 8 times a day (I just thought it was IBS) I bleed in between periods, when I am on a period it's crazy heavy! I just wondered if this aligns with your ending symptoms? Thank you for taking the time to read x

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