One step forward and 10 steps back :(

Just need advice and a rant really. I had my second laparoscopy in November 2014 which was almost 6 months ago. They removed endo that had regrown and spread over to my right ovary. I was pleased that they had found it because I knew then, that it wasn't all in my head and I wasn't imagining the pain. The pain is so much worse now, has anyone else ever had this? I thought that the operation would bring some relief but it hasn't. My anxiety and depression has worsened. I can barely leave the house because of the pain, I'm not sleeping, im doubled over almost all of the time. Work are suggesting that for my health that it would be better if I didn't work anymore, but that's a huge thing for me :(. I can't have sex, I can't do anything.

Just wondered if anyone else has struggled like this? I'm worried that when I see my gynaecologist in a weeks time and tell him all this he's going to laugh in my face. He seems to think (from past experience the first time round) that because he done the laparoscopy then it can't be my endo causing my pain. He pins it on IBS and sends me on my way but I've tried tablets to help that and they done nothing.

I am at my wits end, I'm 21 and I have no life :(

Any advice would be appreciated x

5 Replies

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  • Hi Hun I'm so sorry to hear that you are in such a bad way and so young too. It's like reading my own story in a way when I first started with symptoms in my mid twenty and being treated in a similar way by the medical profession. Mine was nearly 20 years ago which really ignores that women with endo are still being treated like this. It's wrong it needs to stop. You make sure you take care of yourself Hun. Sending you lots of hugs. Julie xx

  • Hi - a lot is likely to depend on whether the gynaecologist was sufficiently experienced to remove all of your endo. Can you send me his name and the hospital by private message. x

  • I'm really sorry things are so crap for you right now. I had the same issues after my second lap (July 2013) but I'd also tried to go back to work full time after 3 weeks (and a wound infection, I lasted six days before collapsing in a heap of tears in the stationery cupboard!), had a crazy reverse menopause going on because I'd stopped decapeptyl injections and was struggling to come off using morphine/oxycontin on a daily basis. Contact your gynae again, explain that you are on the verge of losing your job because you're still ill and if he just tries to shunt you over to gastroenterology (I'm guessing you know your pain isn't just IBS because any pain is cyclical) go back to your GP and see if they can refer you elsewhere. I ended up losing my job but to fair by that point I just wanted the hassle of dealing with them to be over (they never ever did a return to work interview for any period of sickness, MD often told me I couldn't book holiday because he was a tool on a power trip and a whole other bunch of reasons). I'm just recovering from my 3rd lap where they found endo on my duodenum (small intestine) and have a two year hole in my CV bookended by surgeries (I'm 30... great).

    Also if you're in the UK ask to be referred on to the Pain Management Programme - I got to a point where I knew I'm going to be dealing with this for the long haul so needed help and support (have always continued to have pain where endo has already been treated so wanted to pursue nerve pain treatment etc, have had physio - told I had a twisted pelvis as well, had cognitive behavioural therapy and still having acupuncture).

    I hope you feel a bit better soon : )

  • Thankyou so much for the advice! He keeps fobbing he off Sayings it's IBS and I know it's not just that. Sounds terrible but I'm getting to the point where I don't care if I died tonight. I can't live with this pain anymore. It's panic attack after panic attack because I'm scared to leave the house incase the pain gets worse. My boyfriend needs to help me to the toilet and everything else. Just don't know how much longer I can live with it 😔 x

  • You're welcome x Also checkout paintoolkit.org for advice in the meantime, I know a lot of it might sound patronising but it is helpful. Has your GP prescribed you anything for the depression and anxiety? In terms of hormone treatments what are you on? What treatments have you tried for endo and have any of them offered any relief at any point so far? Do a bit of reading up on anything you haven't tried but think might be worth having a go at. Have you tried adjusting your diet to see if it helps at all? Cutting out caffeine, wheat&gluten, dairy - not necessarily all at the same time but worth having a go - although when I did this after my first lap because going GF helped a bit with my bloating issues my gynae took that to mean it was an IBS thing (still not proven though but apparently my bowels looked angry when they went in a couple of weeks ago).

    I know how gutting it is to come through having surgery only for everything to kick off again even worse. Sometimes curling up and expiring seemed like the best idea and the only thing that stopped me was my cats - this is what being ill (and isolated) for prolonged periods can do to your mind. It's sh*t, it really is. But one day it won't be quite as sh*t. Until then lots of virtual hugs xxxxxx

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