I have all the symptoms but they found NO endometriosis

Hi. I have just had a laposcopy for endo but they found nothing. I have all the symptoms, heavey bleeding clotting irregular sometimes I'm on 2 days sometimes 2 weeks usually I'm on at least 3 weeks of the month. I have server cramps random stabbing pains throughout the month. Pains during sex when I go to the loo. I have blood in my poo. Iv lost about a stone in weight since my symptoms got worse. I have diaorehha and constipation a lot. Leg pains back pains. Tiredness. My cousin has it and my symptoms are all most identical.

Iv had blood tests ultra sound iv been to a colposcopy clinc and then just had my op yesterday.

Has anyone else had this, could they have missed it or does anyone know what else it could be. I thought I was finally going to be sorted but now I'm back to square 1.

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  • Oh you poor thing, that must be so frustrating and upsetting to have to suffer with these dispicable symptoms but have no answers or relief. X

    It was my biggest fear going into the lap, that they would find nothing so I really feel for you.

    It seems to happen quite often as I know a couple of other people in the same boat.

    I'm afraid I'm not really in a position to offer advice as I haven't been through this but from what I have read, it is relatively common for it to be missed. Too many women have fought and struggled for years with no diagnosis. I guess the main thing would be to keep pushing for more tests, don't give up as you shouldn't have to suffer. X

  • Thank you. I will keep pushing. Iv got to keep a diary of my pains and periods for 6 months and see what happens after that. X

  • When I first saw gynae she didn't think I had endo so told me to do diary for 6 months. When she saw the diary she decided to go ahead with the lap. A diary is a great tool to aid diagnosis. Dont forget even a tiny bit of endo (which could be missed) can cause huge pain. I really hope you dont have endo for your own sake but some answers with a view to management or relief would be great.

    Did they suggest any particular contraception to use during the 6 months? I tri-cycled my pill for about a year before the lap. Less periods=less pain! X

  • No they didn't I'm currently on cerazette which is sometimes used to manage endo but iv been on that for 3 years already. I'm going to go back to my GP and see what else can be done x

  • sorry to hear this but it could be Adenoyomsis (sorry if spelt wrong) this cant been seen on a lap but can usually be seen on a scan its when its deeper into the muscle. My friend has this and you have just described all her symptoms. Please push for a scan to be done and get a diagnoises. Im sorry im not very good at explaining but goggle it on a reliable source or ask your doctor. good luck x x

  • Thank you. Iv just looked this up and your right about the symptoms. Defiantly something to talk to the doc about. Thank you x

  • Glad its helped I have looked into this as although i do have endo and they have seen this my symptoms are more adeno related so spoke to a few of the girls about it. Im on cerezette too it does help to a degree but it doesnt get rid of the pain as i am sure you are finding the case. i did find though that the hormone treatments helped more although there are side effects. I found from being part of the Endo Uk group which was on face book but unfortunately closed now. that the ladies were so helpful it gave me the knowledge i needed for the consulant to take me seriously. My advice is dont give up you know your body and you will get there xxx

  • This sounds exactly like my case. I was told I had endo symptoms and the gynae said try the pill for a while and if it helps it's even more likely to be endo. In spite of horrendous side-effects it did help, but my lap in December was clear (I've even seen the pictures!). I was told to keep taking it for several months, which I did, and I think my symptoms are slowly returning since then. I've also looked up adenomyosis and my symptoms seem to match that as well, but I had an ultrasound (admittedly several months) before my lap which was clear. If I end up going back to the GP and being re-referred I'll ask about it or missed endo.

    I know I felt like I was back to square one as well, and the 'some people just have pain' explanation didn't help me. I do wonder if being on the pill (which suppresses endo) makes it harder to spot.

  • Iv got an appointment on Monday so I'm going to mention this to her. I haven't had an MRI or an internal ultrasound so in going to push for these. I know my body's not right so there's got to be a reason for it. X

  • Best of luck with your appointment. X

  • Hi,

    I really feel for you. Exactly the same happened to me when I had my lap 2 weeks ago and I posted the same question.

    Apparently a lap can miss endo and some others on this site have experienced this to then be diagnosed later down the line.

    Like u I have heavy periods, pain during sex, rectal bleeding..... and feel back at square 1 but going to go back to gp like u and see where to go from here

    X

  • I'm sorry to hear that. You'd think after getting to the point of surgery you'd be almost at the end of the fight. Good luck with your appointment hope they get you sorted. My cousin has suggested calling nhs direct or family planning as they helped her so might give that a try this week. Will keep you posted x

  • you are not back to square 1.... you do know that you are not riddled with endo everywhere and any hidden endometriomas... really that is good news, but obviously a diagnosis for the pains would have been nice too.

    I am also going to suggest you push for a scan to check on Adenomyosis.

    adenomyosisadviceassociatio... is the website you need.

  • Thank you for the website. I am happy that I'm not riddled with endo I'm just frustrated I have no answers and back at the GP stage. With the symptoms that does look very likely and I will defiantly push for this. Thank you to everyone for your help.

  • Hi there Ziggyzo, I too had a LAP my first just over a week ago and was told I dont have Endo. The lady who did the Lap is the head of the Endo team so when she said she found no Endo I trusted her judgement. Truthfully in the waiting for 6 mths for this, I began to feel more and more sure that I may not have Endo, even though I have almost all of the symptoms you mentioned except rectal bleeding. I do think that I too may have been more annoyed about my result, if I hadn't have already begun to feel unsure.

    I have however got PBS - painful bladder syndrome..... whenever the bladder fills, tiny bleeds are caused inside and my wee is blood red, when I wipe there are minuscule clots, too. This condition is very painful (abdomen and pelvic area) and my body's not done there, as I have other health issues which are ongoing and yet to be answered. My urologist has nothing much to say (SHE IS SHARP, HURRIED AND DISMISSIVE WITH LITTLE OR NO EYE CONTACT) and sent me home yesterday with a tablet to rectify the frequency with which I pee. When I read the leaflet inside it says DO NOT TAKE THIS: if you cannot empty your bladder fully (that's me), if your flow is thin (also me), you have muscle weakness (me) and you have autonomic neuropathy (may be me) or a urinary tract infection (may be me not been tested yet) this can sometimes be caused by the Cystoscopy. So I aint taking the bloody things! Hilarious!!!!! but not funny!

    I do hope you find out whats wrong, I sympathise entirely with the frustration of not knowing, I too have been depressed with the ongoing pain and being pushed from one specialist to another with no conclusive answer.

    You should also think about writing in your diary a detailed acct of your pains exactly how they feel (descriptions) also describe whether or not the medication works for you, loss of appetite, how often you open your bowels etc what that looks like. This isn't just helpful for the doctor but for you, like someone else above has said ...only you know your body best!

    And dont take any shit, speak out if you feel frustrated or feel your being fobbed off. Let us all know how you are getting on friend and good luck with finding some answers.

    Sorry for the rant in the middle :)

    Angie x

  • Oh god that's so ridiculous. I hope you get sorted soon. I. Managed to get an appointment with my consultant after telling a few white lies and they have now reversed my discharge note so hopefully I can get onto the next stages quicker rather than going back through the GP again. Thank you for everyone's support xx

  • I'm in the same boat ziggyzo . I had a lapro in aug and was gutted they found nothing yet I'm in so much pain , I had my appendix out aug 2012 and it was full of endo.. Back in for a scan Monday .. It's soo frustrating isn't it !!

  • Good luck for Monday. Hope you get some answers. X

  • Hi

    This has also happened to me, I have all the symptoms and was convinced that my lap would confirm endo. It turns out that everything looks normal.

    I have been back to GP she makes me feel like it's all in my head and is only interested in giving me medication to mask the pain without trying to find the cause. I have also been to the pelvic pain clinic where I was told that the pain is probably hormonal or nerve based and that apart from the having a coil fitted or going through menopause on zolodex there isnt really anything else that can be done. I am in pain most days and my periods are so heavy lasting about 10 days with big clots. I have severe back pain , sharp abdominal pain, bloating, painful intercourse constipation, nausea, fatigue, rectal pain, and diarreah..............it feels like everyone thinks that this is in my head and that they have all given up on me.

    So I understand how you feel and frustrating all of this is.

    I hope you get some answers.

  • Im so sorry to hear that. Keep pushing like everyone has said only you know your body and you know when something's not right. I'll keep you posted with my appointments and see where they take me next. I'm determined to find answers as I am not going through this for years like so many have had to. Good luck xx

  • Well just got back from the docs didn't really get any answers. Was told that it's all down to my pill and I should either come off my pill all together or try something else and unfortunately pelvic pain there isn't always a reason. So in other words it's in me head or I'm over reacting x

  • Well had my appointment with the GP today to see what they suggest. It was a waste of time. I was informed that sometimes these pains and symptoms just happen for no reason. I should be greatful they didn't find endometriosis and there's nothing else it could be. Possibly all down to my pill ?!? Hopefully I have more answers from the consultant.

  • Hi all I know this is an old post but I'm having similar problems and fighting to get a laparoscopy from GP. However I'm concerned they will say everything's fine and send me on my way! Did you ever find out what was causing your problems as they sound so similar to what I've been suffering for the past year?

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