anyone else feeling like this?

i was at the hospital on tuesday for scans until then i was managing the pain well, i was given an internal scan because as well as having endo i have cysts on my ovaries. Anyway since the scan i have been in so much pain, everytime i move i want to cry, the smallest things exhaust me, i havent had any energy since tuesday, it was definitely the cause of an excruciating flare up.

not only am i in physical pain im also going through hell mentally, i feel like im living in a black tunnel and cant escape, i have a lovely guy who i love to bits but i seem to be snapping at him hes so understanding im just not sure how much either of us can take, ive moved house in the last 2 months ( we moved into our dream home) but thats getting to me too, ive changed docs and he is referring me to a new gynae as my previous one was less than understanding, i was told that a lap was out of the question because i have had previous ops which i think is harsh she blamed adhesions, and said there would be no point, i feel at the moment there is no hope for me, ive got to see my gp on wednesday and i think i need to tell him exactly how im feeling, my job and relationship is at risk becuase of the endo, i personally think i deserve a shot of a laparoscopy to see if it will help me at all.

my team leader at work doesnt understand he is a man and as far as he is concerned i have period pain, despite me trying to explain everything to him, hes not the most understanding of people, (god help his wife is all i say)

apologies for rambling i just feel extremely alone and down at the moment. i work 3 days ive already had to cut my hours to part time because of the endo, im due in work tomorrow and all i want to do is curl in a ball and cry.

again apologies for rambling i guess alot or most of us feel this way and i shouldnt be dumping this on you all but thanks for listening and thank you in advance for any replies

xxx

3 Replies

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  • Dear shopaholictink

    First things first - NEVER apologise for coming on here to offload. That's what it's here for, and as you said, there are loads of us in the same or very similar boats.

    I'm a rambler too! so I apologise in advance for how long this reply will probably be. And how rambly! :)

    Right, Starting with work. There's an excellent leaflet here - endometriosis-uk.org/downlo... aimed especially at employers. It will make it clear to your boss that you're not just suffering from period pains, and also gives them tips to help you to deal with it, thus ensuring that they get the best out of you.

    Secondly, your gynae. Hmm, this is a tricky one. I don't know how old you are or whether you already have children so I'll explain my situation.

    I'm 46 so my childbearing days are well and truly over and as a result, despite the fact that I have widespread grade 4 endo, my gynae wants to leave well alone and so do I. Every time you have surgery, more scar tissue forms, and endo loves to feed on scar tissue. Even if they cleaned you out completely, the chances are that you would be back to square one within a matter of months. My endo is wrapped around and binding together all of my internal organs, and any surgery, even simple, would involve a bowel surgeon and a bladder surgeon. It would be a huge procedure, with very real risks of damage to either my bowel or bladder or anything else in there. It's bad enough dealing with the endo, I don't want to add problems and complications to my every day life. Your gynae may have worded it badly, but she's right; there really is no point making an already awful situation even worse.

    All of that being said, if you haven't had children and you are planning to do so, you need somebody to go in there to see what is going on, and to 'free you up' as much as possible.

    I reckon the pain you are experiencing now is probably 'bruising' from the scan. I'm usually uncomfortable after my scans, exactly as you describe.

    But what I get most from reading your post is that you sound depressed. Not just a bit fed up, but properly clinically depressed. And if you think about it, that's hardly surprising; moving house itself is one of the most stressful things you can do in life, even if it is to a dream home. I bet you're feeling guilty because in that respect you've got what you always wanted, and you can't enjoy it because of the pain, and you think this is translating to everybody else, especially your partner, as....ungratefulness? As for your man - endo men are very, very special people. I bet he's just as frustrated as you are about it all. He knows it's not your fault. But as you said, it's not fair on either of you at the moment.

    Is there any chance he could come to the doctor with you? I take my husband to as many of my appointments as I can; when my gynae asks me how the pain is I'll say I'm fine, but my husband will say "Actually, she's not fine, she's spending most of her time on the sofa with a hot water bottle and she's miserable". I think sometimes we just get on with it because we think there's nothing anybody can do to help.....but I think you need help at the moment.

    Endo and depression and anxiety seem to go hand in hand. I bet most of us on here are currently being treated for depression, or have been in the past. There is no shame in this. Think of the battering our bodies take on a regular basis. It's hardly surprising that our brains can't cope.

    Make a list before you to to the doctor of everything that's 'wrong' at the moment. Be honest about how you're feeling. If it means a course of antidpressants to help you, take them. It doesn't mean that you've failed. It means that you're an intelligent woman taking the right steps towards making everything as good as it can be, and you deserve that for yourself.

    Good luck, and if you need to chat, please feel free to message me

    Lots of love, Chrissie xxx

  • Thank you so much for the kind reply.

    I'm 35 and have 3 children with my ex husband but my partner and I would love to have a child together. It feels like a distant dream but we live in hope.

    I've had a lot of surgery before. I had a panprocolectomy in 2005 due to u ulcerative colitis and pre cancer cells.

    So I've definitely got a lot of adhesions in there.

    I've got an appointment with my gp on Wednesday and I will one and for all tell him exactly how I'm feeling and accept any help that is on offer.

    Thank you again it means so much that there are people who care enough to take time out and help just by talking.

    It's sad that there are so many women in our condition that get on with it. Because wrong have to were stronger than we realise aren't we xxx

  • I hope your appointment well well today. Sorry I didnt see your post earlier. chrissie has given you some brilliant advice. I think if you really feel you need the laparoscopy you should push for it, make a fuss if you have to, see someone else until you get the answers you need. Ive learnt you have to learn not to be brushed off with this condition. It sounds like you need reassurances of exactly what is going on, especially if you have cysts.

    I also understand how down this can make you, its hard to live with, and being in constant pain does not give a great quality of life. You're not on your own in feeling this way.

    I hope you had a better experience today. x

    p.s. I had another internal scan today I know its not a nice experience.

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