What do I have to do?

Hi

got woken up at 1am last night in agony with pain across my belly button, my whole right side and my upper back on the right felt like it was going to burst. I've never been woken by pain before and never had pain like this. I do think I have a high tolerance of pain and hide my agony very well. I managed to swallow a naproxen and go back to bed. Couldn't sleep after that, got another hour maybe before work. I work in London so the commute was a bit tough but managed it. Had some breakfast even tho my appetite has gone completely, then the pain flared up again to the strength of the night before and got worse. Had quite severe nausea too. Rang my gp who got me an appointment with another doc later. Left work early, journey home was awful but soldiered on thinking I was going to get real help as it's not my endo pains. Doc was great, he wasn't convinced it was endo pain either and examined me properly. He rang hospital for general surgeon as he had a strong suspicion that it was my appendix. They didn't want to know because I have endo and would see me only after gynae confirmed it wasn't endo. So I had to drive myself there, ten min drive took nearly an hour in traffic, sitting down is so painful. Could barely breathe or see from tears by the time I got there. Got put in an examination room as soon as I got there as I could barely walk, couldn't sit or breathe at this point. They took bloods and gave me two of my tramadol pills I got from the doctor. Trainee doc came in, asked lots of questions, felt my stomach and punched me on the back which hurt like hell! I'm still writhing on bed in agony. He smirked about the gp who referred me, and showed a complete lack of respect for him and the fact the gp is his mentor. He comes back a while later, said it's not a kidney stone as I'm not in enough pain as he's seen people leap off the bed. My bloods weren't back yet but they would call me at home but they didn't think appendix. They didn't know what it was but probably endo pain. I couldn't believe they were dismissing me completely. I said through gritted teeth and floods of tears from pain that it's not my f@$&"$g endo. I put my shoes back on and walked straight out to the tune of him saying if the pain gets bad to go to a and e but they won't deal with my endo as I'm on a never ending waiting list with the consultant. Things have changed so much since my referral, endo pain is worse, sharp stabbing is constant all month, chronic fatigue during periods. My referral was because I was worried about my fertility so he was going to test my tubes and cut out a bit of troublesome endo. I collapsed in a heap back at my car and sobbed and sobbed. No one will listen to me about pain and I seriously think that if I broke my leg they would say it was endo pain! On my way home I contemplated taking my seat belt off and driving at speed into a tree. I really can't take much more of going round in circles. The doc rang just as I was in the door saying my bloods were back, very quick as they said it would be hours. He said they were fine, which is good but it doesn't get me taken seriously. His apologies on the phone felt fake and told him I doubt I would bother going to a and e if things got worse. I asked if anything could be done or a letter written to my consultant to let him know things have changed and I've been sent to hospital three times now for nothing. He pretty much said that we all have the same pain and he can't expect everyone's operations to be brought forward and it's tough shit and will have to wait like everyone else. I've been waiting since June now, every day I pray for a letter. I'm so upset and at the end of my rope now. And the icing on the cake, the man I'm supposed to be marrying said if I wanted him to come home, he would try and leave work as early as he could but it's a bit busy! That was his reply after two hours of nothing from him when I first got to hospital. Feel like he's dismissed me just like the hospital and I really am truly on my own. He can cook his own bloody dinner tonight!

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  • Oh you poor thing! Please don't take your seat belt off! What about phoning the PALS service at the hospital. They handle complaints and consultants are usually pretty quick to ring if pals are on their back.

    Or ring department and say you will be making a formal complaint unless someone sees you.

    I understand through if u just feel like you can't fight anymore since I'm nearly there too. I have similar pain to you -pain in kidney but I've not been diagnosed with endo or anything. I couldn't walk yesterday. So I've decided to try and get a private appointment. I'm going to take someone with me for the appointment since I'm not sure I made enough sense last time through all the tears .I know a private app is pricey but I'm hoping they realise if I'm willing to whack that onto my credit card I must be in f*king pain that is real.

    If things get really bad you seriously need to get to a&e. But take someone with you who can stand up for you if you've lost your fight. Some ladies at my work offered because my mum is no longer with us. They were fuming when they heard about my supposed treatment- I bet if you tell someone they will be to and go with you.

    I think if you speak to pals it might be better to turn up there in person. They will immediately see how much pain you are in and think "wtf are these consultants doing?"

    I'm so sorry you are having to struggle through this. Please please try to take care of yourself. I'm no expert at endo or anything (just joined forum) but if you need someone to talk to send me a message. I'm sure all the other ladies on here will say the same thing - you are not alone.

    Hugs

    Xxx

  • Urgh - how awful for you. I hope you're feeling better soon. I get flare ups like this from time to time and was told that it could be a cyst (endometrioma) bursting or twisting. It's completely off the scale of pain and feel like I'm a cow trying to give birth!

    My doctor prescribed a higher dose of codeine and gave me some liquid morphine (terrifying!) for emergencies. So there is pain relief out there for doctors to prescribe you.

    I really agree with the previous comment about taking someone with you. It shouldn't matter but I also find I'm taken much more seriously then.

    Take care and good luck with the fertility treatment.

  • That is absolutely disgusting and I really feel for you! I haven't got time to write a proper reply, but want to say go back to your GP and keep pushing this. I had the same thing, I had appendicitis, it was obvious what it was but because I was skinny at the time they labelled me anorexic and said I just needed to eat, sent me home with a sandwich. A week later I almost died and all my organs were failing, had to have emergency open surgery and I really regret not going back sooner. They told me they had grown cultures which showed a serious infection but they failed to let me know!! Is the pain in your lower right side, and do you have a lump there? For the week before mine burst I could feel a hard lump on my right hand side, it was just totally obvious what it was. Also it made me physically sick several times and was complete agony, nothing like endo pain.

    I really hope they don't just leave you, it's disgusting the way they treat you and the GPs. Please if you feel worse go back to a&e say if you have the symptoms I mentioned above and that it's *not* normal for you.

    Hugs xxx

    PS I hope I didn't scare you, I just wouldn't want anyone to go through doctors being totally ignorant xx

  • PS - also keep an eye on your temperature, with normal endo pain you shouldn't have a temp, but with a burst cyst, or appendicitis you probably will. Hang in there xxx

  • Thank, my temp normal but face really flushed. I was horrified when I looked in the mirror this morning! My eyes are so swollen from crying! Had to pull my eyelids apart this morning and the tears have resumed! I think it might be the tramadol making me sob so much. Still in lots of pain but not to the extent of last night but can feel it escalating. I have made an appointment with same gp as yesterday who was really nice and believed me it was different pain. I will try and get him to write to the consultant and say I need at least scans, x ray or whatever to see the real picture of what's going on inside

    I've not been sick but do have quite bad waves of nausea. I don't get nausea with pain which the trainee at hospital suggested. I've not eaten since yesterday morning and I feel so full even tho my stomach is growling occasionally! I am going to try and ring the consultants secretary later too see if I can get to see him, just for an appointment to see what he thinks. Don't know what else to do. Was told my belly was soft at hospital, but gp and even I can feel it does feel quite hard. He didn't press very hard, felt more like he was just poking my flab.I do handle pain very well normally and I've never been one to shout and scream, I'm more of an introverted screamer!! Maybe I should let it all out! Really glad I get the opportunity to work from home on Fridays so grateful for that and if it is all nothing, I can resume Monday and I've had lots of time to rest.

    Thanks for all your advice and kind words. I'll update what gp says later.

  • Thank, my temp normal but face really flushed. I was horrified when I looked in the mirror this morning! My eyes are so swollen from crying! Had to pull my eyelids apart this morning and the tears have resumed! I think it might be the tramadol making me sob so much. Still in lots of pain but not to the extent of last night but can feel it escalating. I have made an appointment with same gp as yesterday who was really nice and believed me it was different pain. I will try and get him to write to the consultant and say I need at least scans, x ray or whatever to see the real picture of what's going on inside

    I've not been sick but do have quite bad waves of nausea. I don't get nausea with pain which the trainee at hospital suggested. I've not eaten since yesterday morning and I feel so full even tho my stomach is growling occasionally! I am going to try and ring the consultants secretary later too see if I can get to see him, just for an appointment to see what he thinks. Don't know what else to do. Was told my belly was soft at hospital, but gp and even I can feel it does feel quite hard. He didn't press very hard, felt more like he was just poking my flab.I do handle pain very well normally and I've never been one to shout and scream, I'm more of an introverted screamer!! Maybe I should let it all out! Really glad I get the opportunity to work from home on Fridays so grateful for that and if it is all nothing, I can resume Monday and I've had lots of time to rest.

    Thanks for all your advice and kind words. I'll update what gp says later.

  • Really feel for you. I understand the pain you are going through and it shows same symptoms and pain as that of period or Endo pain. I had stage 4 endo and every month those 5 days are days of hell where i am left to die with pain. No one care for your pain, tears roll down just feel like you are in grave with no real help. Hence i decided not to be a victim of endo pain and GPs ruthless behaviour and pain. When i got off my periods, i got my strength back and i started contacting PILS, writing big complaints letters, filling online forms on PILS how my pain is untreated, how GPs and consultants are just doing tests but no immediate laproscopy to identify whats wrong, called Gyanec department and spoke to head of department, just raised complaints whole month by all means i can. Then after 4 weeks, had a lady calling herself director of Gyanec departments saying she will look after my case personally and quickly arranged for tests, diagnostic laproscopy, proper examinations etc and yes though found V badly spread Endo stage4 , fibriods, Adhesion to the mark where they could not see ovaries and tubes and uterus too.. It was completely distorted anatomy inside. Had 3 operations in 6 months and lots of medicines and treatment which corrected everything and finally post surgery in Sept, I am pregnant naturally after lot of pain, struggle and distress for 4 yrs.. All constulatns, doctors, nurses,GPs kept saying i will never conceive with Stage 4 endo ...try IVF but i already have one daugther and not eligible for free NHS IVF..i decided i will not go private as i pay NI, kept complaining until i got all proper treatments and operations to finally make my life bit better and made sure they did early scan too yesterday to ensure pregnancy is going smooth. I am now into 6th week and saw strong heartbeat. Bottom line, stop crying and being victim, find ways, ask people, start complaining, take help and u will find way sooner or later.

  • Hi Squancy,

    The crazy thing is it could be your appendix. I was having lots of bad pain similar to what you have described and I ended up having my appendix removed as endo and adhesions were twisting it.

    I think what you are going through is ridiculous.

    Are you with the NHS? Whenever I've been in the uk they were useless, basically said nothing they could do. Six months later I'm overseas and I end up having to have quite a big op. fortunately done privately.

    I hope you have a better day tomorrow. Xx

  • I'm so sorry hear you have been feeling so awful. I had excruitating pain in my stomach by belly button and it turned out to gall stones. If had course of zoladex and the increased hormones caused the stones to form. Do you find it flares up when you eat something high in fat? I realised what mine was when I ate a coissant.

  • This pain came on suddenly early hours Thursday morning and woke me up. I'm not convinced it's endo pain at all as I know my body and when, where and how it hurts. I find it more bearable lying down and not moving but sitting, standing and walking gives me horrific pain in my abdomen and upper back. When they did a renal punch on my right side, it was really painful but as I'm not one to yell out and verbalise my pain, I apparently didn't look to be enough pain. I spent most of yesterday in a tramadol coma. I panic and wake up with a start frequently and I don't know where I am. When I'm awake which isn't for long, I get blank periods and don't know what's happening. So I don't think taking those will be suitable for work next week at all. I'm worried about coping with the commute, walking and sitting at work as well as being so far from home. Spent a long time in the bathroom this morning with the cold sweats you get when you're going to be sick. I managed to fight it back. If I had, I would have gone straight to hospital. I'm just so angry and sad that no one will examine me properly because I have endo.

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