Endometriosis?

Hi all, for the last few years I have been struggling with heavy periods (with clots), they are irregular and they are extremely painful to the point I'll be curled up on the floor crying. I have been spotting and bleeding between periods. I get a lot of lower back pain. I have trouble with my bowels and get a lot of pain and discomfort. I have been trying to get pregnant for 2 years without such luck. I am also constantly so tired and struggle to leave the house or go out for more than a couple of hours - during my period this is almost nothing at all as the pain gets too bad. I have lost countless jobs because I just do not have the energy, and have to have so much time off work.

At one point, I ended up in hospital with possible appendicitis and they did ultrasounds but then they mentioned endometriosis and told me to go doctors. So off to the docs I went, and again they didn't listen. I got fobbed off with contraception to sort my periods out even though I wanted to try to and conceive for a baby. But it doesn't calm them down at the minute. They put me on the mini pill due to me not being able to go on the normal pill due to my risk of blood clots as they run in the family. Now a doctor is listening. She wants to run one more blood test just to double check for any other illness and says if that's clear then she will push me for more tests. Has anyone else had trouble getting doctors to listen? What else can I do? and any tips on what I can do to manage these symptoms in the mean time while im waiting for them to do the correct tests to comfirm this.. I am becoming so depressed, me and my partner have split up because I was so tired and constantly unable to do anything, unable to conceive and just became so withdrawn! I feel so alone.!

x

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  • I'm so sorry to hear what you are going through! It sounds very familiar to me! I started with extreme pain when my periods began. They got even worse in my late teens & I ended up on hospital and they removed my appendix ......nothing wrong with my appendix! So began a 7/8 year struggle to get someone to listen! I was flooding & passing out ending up on the gyne ward, but all they kept saying was it'll settle down...... It didn't! So fast forward to me being 26 and collapsing on my new boyfriends bathroom floor and flooding everywhere! It terrified him, poor thing and he called the ambulance and back in to hospital I went, they tried to fob me off but he stood there and and told them we were not leaving until they did all the tests they could, finally they did an internal ultrasound and the doc went "oh"! It took another 6 months and loosing my job but I finally got a laporoscopy where they found the endometriosis and that my bowel, bladder, stomach, womb& tubes were all fused together..... I have since had two more laps to remove a 7&6cm cyst and I'm pretty sure my adhesions have come back, so back in I'll have to go. It is ridiculous how long it takes and that so many docs don't listen!

    Please don't feel alone, so many of us suffer and at least we have the ppl on here who understand. I take a mild antidepressant which I find helps me, my moods were everywhere!

    Sending hugs ,Steph x

  • Thank you, I am so sorry you went through so much. I hope you are managing a little better now? sorry to hear u may have to go back in, I hope they sort it. I have had ultrasound and internal ultrasound, they didn't find anything but I did read online they don't always pick it up? apparently the doc wants to test my iron levels first before going into whether it could be this (I've had the iron levels tested 6 times in 6 months, im pretty sure they worked out its fine by now!!) im currently sat here nearly in tears with the pain and I don't know what to do anymore. just walking 5 mins down the road is so hard. I've lost countless jobs and now my partner all because I cant do anything but sit and cry in pain. I get so embarrassed by my constant leaking during periods because they are so heavy, and me sitting here crying in pain. my family just don't know what to do to help me cos I still have no official diagnosis but the symptoms pretty much are the same?! I feel so depressed and alone because no one around me seems to understand how much pain im constantly in, and how tired I always feel. I wish the docs would finally do something!! Thank you x

  • omg hun this is me exactly ! i finally got diagnoesed 3 weeks ago with endometriosis after 2 years of seeing doctors and tests etc all coming back clear!

    it was of my own back by googling constantly that i came across this and my symptoms all matched like yours!

    the tiredness and back ache especailly all commom symptoms i was havin.

    im no doctor but its a good possibility i really stood my ground to see the gyno again and get the laproscopy done as that the only way it shows up

    xx

  • Aww im so glad you finally got a diagnosis!! I wish I could hurry up and get one. I am so fed up of living in this constant pain. I have to wait to have a blood test on the 19th, then wait for the results (which I presume will be after xmas now) and then book back in with my doctor to discuss this further and I am just going to stand my ground because I am sick of not being listened to and being in this constant pain. I am so depressed because I am stuck at home so much! xx

  • It took me over 4 years to get diagnosed, just make sure you keep pushing. I was told by one doctor to go away and come back in 2 weeks if I was no better as she thought it could be endo (I'm sure you can figure I was no better!) but couldn't get in to see her so saw another doctor. His response was, I don't know why she told you that, it won't be that, I'll get her to call you. Guess who was wrong! Just keep pushing, no matter how embarrassed/upset/pissed off you feel, keep going, it'll be worth it x

  • Wow 4 years is a long time! Some doctors really don't know anything! I will keep pushing, just so tired of the pain now. I really have had enough. im not very good at coping with pain and cant find anything to control it. I just want answers now, so I can learn what it is and how to manage it. x

  • i would just make another doctors appointment tomorrow and just demand you be referred to your local hospital to see the gyno as this will aslo take ages to get an appointment threw i waited 6 weeks for mine i live in kent and we have the choose and book system ??? in the mean time still have the blood tests etc.

    best thing i done was see them they really listened i went in all guns blazing as well wanting a hystorectomy lol but they really were understandin.

    my problems are still not over tho this endomitrios isant an easy thing to get rid of ive still had bad pains but at least i no what causing it now and can look to the next step.

    have you tried co codomel for the pain not long term but just when its at its worst i find they help the best for me xx

  • Yeah I might just do that!!! I am fed up of living with this pain! I cant take co codomel they make me sick. so does paracetamol. I try neurofen, but doesn't touch the pain. The best thing I have found so far was when the docs put me on 2x50mg(100mg) 4 times a day of tramadol. the pain dulled down but I felt extremely drowsy and sleepy. I couldn't get anymore of them, and at the time I didn't want to because I hated that I was so sleepy, and could do anything with my partner (and now ex) and I heard they become very addicitive and not good to be on if trying to get pregnant because it can harm the baby? as im no longer trying at the minute I might see if doc will put me back on them for a while xx

  • I feel exactly the same way! They haven't listened to me either I hace felt like this now for four years,, and only now they are finally investigating further, as to compassion there isnt any I feel so down about it, as to the tiredness i totally understand, it drains everything, I cant even face the gym anymore, plus im so bloated, I hope theyy sort it fofor u and listen xxx

  • Awww im sorry they are not listening to you either. It is a horrible feeling not being able to do anything anymore. I know how you feel. I usually walk for hours and now struggle to walk for 5-10 minutes. I feel so drained! If you ever need to talk im always here xxx

  • Thanks hun! I feel so silly, im really scared about the lapocopy operation too!! Have you had that? Im on a waiting list, looks scarey, I have had an operation before n its scared me, as for the energy levels, sometimes I have a smoothie full of vitamins itmakes me feel a tiny bit better maybe try one?? ? Also I am going to try crystal healing in the new year, to calm me down before operate Xxxx

  • no I haven't had lapocopy yet. they are still just talking of whether I have endo or not. its looking quite likely tho! I am scared of it too but I want them to do it so that I can finally find out whats wrong. where do u get the smoothie full of vitamins from? which one do u have? I am so fed up and feel so alone, but its nice to find people on here who are actually feeling the same! xxx

  • I get it from boots its called 'naked' or I make them myself, I know I only just found this website n its very helpful, I think my boyfriend is fed up of me not wanting sex too! Its causing bad feeling between us! Plus I am on the pill and my periods are still really bad! Its so frustrating i almost feel robbed! When my boyfriend talks about babies I start to fill up! ! Sorry if im a bit full on I just waa y it as it is, xxx

  • ah thanks i'll look into getting some! I know the feeling. Me and my partner split up due to all of this. Our sex life went dead. we agreed to try for babies only for it to not work I got so stressed at it not working and now docs are saying I might have endo which explains it all! I dread to think what my chances are if having kids. I know im still young and some people conceive fine, but not everyone does do they? I feel like im being robbed too. I hate that this is all beyond my control and I can't do anything but sit and wait until the doctors do something! its way to frustrating!! xxx

  • Hiya! 😊 I know exactly how your feeling! I've had heavy periods and clots, back ache, extreme exhaustion, horrific stomach and ovary pain! It was only about 5 months ago they sent me for a ultrasound for me to find out I have 7cm cyst pressing on my ovary,bladder and bowl! Only now 2years on! But to add the it all! My gynaecologist too tell me she's more than 90% sure that I have stage 3 endometriosis! And I may have to have my ovaries taken! I'm only 20!!! 😬😡😊 doctors don't listen but my advice is to get going back and request to see a gynaecologist to re doctor! If I never demanded they refer me to a gynaecologist they still wouldn't of! I hope you get sorted!! X

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