Mid diagnosis

Hi, I am in the middle of being diagnosed with endometriosis, I thought my pain was normal for a number of years, and after many trips to the doctor with passing out due to pain when I'm on my period, vommiting, heavy bleeding, or sometimes no period for a length of time, upset stomach and lots of time off work due to excruciating pain, I finally got somewhere with the suggestion of endometriosis, I have an appointment for a laparoscopy and a gynaecologist appointment, which at first I was positive about,but after hormone tests and reading online about it, I've become quite worried about my future and worried about this potential condition, if anyone can give some advice, or tips on how to get through this, I would be very greatful, I understand I haven't been diagnosed yet, but I was looking for some advice, thank you :)

12 Replies

  • Hi Sophiejm, sounds like we're in the same boat... I've had an appointment with a gynae, just waiting for the next step (laparoscopy). Trying to sort out the appointments has been a nightmare in itself - long story, but after reading around it all, it's pretty scary, huh?

    I've been booking time off work to coincide with my worst pain days, which I can't really sustain, but have been apprehensive to ask my employer for work adjustments without having an official diagnosis... HR have suggested home working to me this week, but it's not very practical when there are meetings, site visits etc. that I need to attend. Using annual leave seemed to be the only way to not rack up a tonne of sick days, and I didn't want to be seen as unreliable.

    What do you tell people when you've been off with pain? One of my episodes (where I fainted on a construction site - not a clever place to do that!), the GP thought it might be a UTI but tests showed otherwise... But when people asked what happens, I told them the infection got the better of me...

    There are some people I can trust in the office, and I've told them I don't know for sure what it is, but it feels like that famous scene from "Alien", except the alien then eats my brain too!

    But even when booking the time as leave, word still gets round that I've been "ill" and ask me if I'm better now... it's harder with people I don't know very well, so I just say "oh don't worry, I'm not contagious" or if Its someone I know a bit better, I'll just say "I'm better than I was" as I'm still in pain, although less, when I go back.

    I got myself an electric heat pad to have under my desk at work, which some colleagues thinks is just because I'm cold, the same ones I've explained my previous absences too, it would seem they don't know its a reoccurring issue. Hmm...

    I don't know how to tell them what ive been dealing with without sounding like a skiver who can't manage a bit of pain, especially without the proper diagnosis 😞

  • Hey :) I completely understand where you are coming from, I'm currently off work due to being in pain as my period came at last 2 days ago, but once again I can't go to work, it's also knocked my immune system on the head so I have hardly any immunity to infections, and as I work at the hospital it's difficult to cope with the amount of germs going around, I'm sorry your boss hasn't been understanding, maybe try and have a break from work completely? There is nothing worse than forcing yourself in because you don't want to go off sick, I get this feeling a lot, and I find being off very stressful but I've accepted now that it isn't my fault, and diagnoses or no diagnoses, you need to rest and take the time when you need it! Stay strong! Xxx

  • I think that to some degree there is part of me worrying too much about what other people think, but with my line manager going off on maternity there is a big expectation to 'step up' - I want to get on in my job and make a positive impact, which is hard enough to do at the best of times. Or, if I want to look around for another job, I don't want a rubbish reference because I'm considered to be unreliable or unproductive, or my coworkers resenting having to take up the slack when I'm not there.

    Maybe I just just be straightforward and consist when trying to explain it: "my insides are f'd up & it hurts like hell".

    Working in a care environment must expose you to all sorts of illnesses which can't be good if you have a compromised immune system... I'd be interested to know if there are correlations between the two conditions (I'm coeliac - an autoimmune condition).

    Take care xxx

  • Hi,

    I'm in exactly the same boat, worrying about references and whether or not to stay at work or not, it's a stressful time to say the least, there is a link between endo and low immunity, my doctor advised me of this and apparently it's not uncommon, which in my case, makes it even worse given that I work with a multitude of bugs everyday, makes things quite difficult, I'm hoping I can gain clarity on what to do as things just seem to be mounting up on me at the moment as to making decisions, which are pretty important, I'm shocked at how quickly things have taken over my life in such a short amount of time, I've even been out on anti depressants due to the worry and stress that this has caused me, I sometimes think maybe I was better off not knowing what was going on and thinking it was normal, then I wouldn't have all this to worry about! Hope things get better for you, thanks for the chat! Xxx

  • Hi Sophiejm, I am in the same position 😔 I have been suffering with these symptoms for 6 years now and only just having my first lap. They are booking me in and say latest I will receive my appointment is Feb, just feel this is too long. After 6 years of being told I have ibs and it is all in my head I am just fed up and feel completely pushed aside. I have been missing work a lot until my manger went to me that he is 'sick and tired of this' and even told me that I need to start focUsing on work and not my health. It's hard trying to explain to someone who doesn't know what it is what you are going through. But you must try to stay positive 😊 Thankfully for sites like these which I knew nothing about and thought I was alone. We can all stick together 😊

  • It's awful that employers don't understand, I'm in the same position at the moment and I'm currently off sick, and thinking of leaving completely as I keep picking up infections, it's a nightmare and I never saw myself being on this path and having to deal with these sorts of issues! But it's nice to hear from others so thank you for replying! I hope you feeling better soon and get things sorted with work! :)

  • My best advice would be to read up as much as you can and get seen by a specialist rather than an ordinary gynaecologist. You can find a list of specialists on the bsge website. Find your nearest one and ask your gp to refer you to them.

    Please try not to worry too much as this disease affects everyone differently. For every sufferer you meet on this site there is someone who has endo and can function fairly normally.

    The most important thing is to get treated by someone who is an expert. Then you will have the best chance of minimal disruption to your life. Having said that there are always exceptions!

    Good luck xxx

  • Thank you! I've just looked it up and found one not far from where I live, so I'm going today to talk to my doctor, I really can't wait any longer, this is already having such a bad effect on my mood and the worry of it all is awful, I just can't wait to get answers, and why I'm in such awful pain, thank you for the advice though, I appreciate it. Xxx

  • I wouldn't be able to cope at all without sites like these. I've been living with endo for years now and have spent many occasions in and out of hospital as a result. A month ago, after my gynea removing, yet more, endo cells they put in the mirena to help ease the pain. I was so positive about this step being taken, but I'm actually now in worse state than I've been. I've got to a point that I feel I can't go on living like this. I've an appointment with my gp on Monday and I'm going to ask him to remove to remove the coil (I can actually feel it there!) And get me an urgent referral for a specialist. Someone I only discovered worked in Ireland all through my own research. I've gotten to a stage where I feel he's the only one who might be able to help!

  • Take each day as it comes, there are good days, there are bad days.... i know the feeling well. Stood in your shoes last year.

    They can diagnose you with endo if they will find it with keyhole surgery. They are not able to see it on a scan, so that is why you need surgery. Once you have been diagnosed that will be it, endo wont just go away. It is possible that they can remove it, but never the promise they can grt rid of everything, because some of it can be really small. The pain doesnt have to corralate with the amount of endo you have. Some women suffer a lot, but the sugeons didnt find much and vice versa.

    It will be good for you to have it checked, otherwise you will live with unknown and worries and this can control your thoughts and mind, so it is good to have it checked. Worries are very normal, we all have it, specially when you dont know what will happen next. It sound like you have many problems and we all feel for you. This is do hard, specially with misunderstandings and lack of information.

    I hope it will get sorted and you get yourself better!


  • Thank you so much, it's just very upsetting not knowing what's happening, it's ruining my job, it's ruining pretty much everything, it's just a lot to take in, and still with no idea what's going on with my body it's beginning to get a bit too much, thank you for your kind words and advice, it's nice to know that people understand and I'm not alone, so thank you xx

  • If it is getting to much for you talk to your GP or have a look into CBT Therapy. It helped me with understanding my thoughts and feelings a bit more. It is not only the physical problems, but as well what is going through your mind and this will keep you busy.

    It is a lot to take in, i still feel sometimes very overwhelmed and frustrated with myself and misunderstandings from the outside world what it is and to explain how you feel and what you are going through.

    You are not alone and if you need to get more of your chest, then write it down and don't worry, we will read it and respond!

    Good luck to you and don't be afraid to ask for help, we need to learn that we are not alone and there are people to help us.


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