Hello I'm new

Hey. Sorry about the spelling.. im a 24 year old lass.

Iv been in and out of hospital with chronic pain. And they said it's endemtrosis.

But iv read the only way it's diagnosed is lacopsy is this true?

I'm also struggling with every day tasks. And atm it's 5 days out of 7 I'm stuck in doors as I can barely move. Can walking aids or anything else be provided to help? I'm on oramporph and slow realse morphine tablets. Codine and paracetamol and another strong drug. These aren't really helping the pain just making me feel groggy. Work keep ringing to see when I will be back as it's nearly 2 months iv been off. I'm worried they can sack me for it? Does anyone know if they can. I have had sick notes but they just sound so moody on the phone.

I'm really feeling fed up atm and sure people just think I'm skiving and making a mountain out of a mole hill. But the pain is severe everyday. Witch I read it's normally just whilst on your period. Really depressed and fed up with it. Can't even have intercourse without it hurting. My by is scared of hurting me and I'm worried he's got fed up with it. We've not really spoke about it as I get embarrassed.

Any help and advice would be great please .

10 Replies

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  • hi

    i share your feelings. I too am worried about work and what people think but unless they havr experienced this pain they cannot understand.

    I too am starting to feel depressed and isolated.

    Please feel free to read my post.

    You should push for a laparoscopy so that they can assess the severity and look at treatment options x

  • Iv got an appointment soon and with pain management. So hopefully they will do something.

    Just simple things like walking is such a chore now. From going to pain to chronic pain has just thrown me abit and think others are struggling to belive how much it hurts. That's the worst part xx just because it's not physical

  • hope you get the right help and support x

  • Hi,

    I am new too, I also work in HR with regards to work I can give you advice but would need to know more about how long you've been there and their policy on absence management. Are you keeping in touch with them and letting them know about any updates? What does your sick note say?

    I literally only had my laproscopy in Feb, after pushing for it - you really need to go in to your GP/Consultatn appointment and tell them how much its effecting you, don't hold back or feel silly about any of it. Be frank and tell them you know your body and that you think it's endometriosis and you want a laproscopy.

    S

  • I feel like giving up with hospital they have been nothing but useless. My doc readmitted me and they just changed meds and said will make an outpatients. Made me feel like they just thought I was faking it. I didn't want to be there but physically was in so much pain. So came home that night.

    How long does it take to recover from lacopsy? X thankyou for reply just so confused right now

  • Hi,

    Sorry to hear you are in awful pain.

    Do you eat wheat (bread, cakes, pastas, cereals etc) or dairy (milk, cheeses, whey protein etc)? If you do, trying cutting them out of your diet, even just the wheat. It can make a massive difference to the severity of your pain. It might take a little while, or you might notice a change quickly. It may make no difference whatsoever - every one is different. Bread can really bloat some people without them ever noticing it.

    I understand your total lack of faith in doctors, hospitals and the rest as I had the same experience.

    If you can find a way to talk about the sex thing, it may help to bring you closer together. I didn't want to talk about it and would avoid it at all costs thinking it was a failure on my part, and the fact that the endo killed any glimmer of a sex drive. I am still with my now husband 23 years later.

    If you do get a 'lap' op, it can take anything from a week to considerably longer to recover. I prepared myself beforehand by going to see a naturopath who gave me some immune boosters and healing concoctions to take before and after. I did this for the last couple of 'laps' ( I didn't know about it before) and it did make a difference to me.

    Educate yourself with as much knowledge as you can, that way you can make informed decisions about your body.

    This site is great as you can ask all those awkward and embarrassing questions spiralling round your head.

    Wishing you luck

    Maud x

  • Thankyou for your reply. Bread really does bloat me so try not to eat to much. Atm I just eat when I feel like it as drugs are making me feel sick most of the time.

    Been looking at fold up walking sticks. As I think it will help as struggling to walk some days without slouching in pain. Sounds silly. But worried people will just judge and I guess it's pride. Friends have asked what endemtrosis is. Iv tried to explain.. but they just say you'll be better soon.

    My partner asks if I'm okay and makes sure he's not hurting me. I just feel so bad for him as it's like I'm not intrested but I am. I'm 24 I should be fit as a fiddle.

    The worst part is they diagnosed me as there 99.9% sure it is as I'm the right age and All fits the critia. Just felt like they pulled a diagnoses out of a hat and said there. Sounds stupid but didn't know if there was proper ways of diagnosing apart from lacopsy. And iv been pushing and pushing for one. Got appointment next week so hopefully will get sorted. Sick of being of work. But really think I'm going to have to cut my hours down and do half days. Instead of 12 hour shifts. But really going to struggle with money as on a debt management plan and need to repay that. They have already stopped that as I couldn't afford it lately. So need to try sort that.seeJust a big dark hole ahead!

    Thankyou for your reply ladies.

  • Its really easy to feel like that about them dismissing you. I always feel like I'm wasting their time!

    It took me a while to recover from the lap, had two weeks off in the end and was still dizzy and had to take it really slow. I tried to walk between two of my offices (a 20 min walk) and nearly passed out.

    But it found my ovary and Fallopian tube embedded in my uterus. I had to keep going back to the gp to get the referral and even on the day of the lap I thought what if they think I'm making it up!? Am I wasting time......it shows you have to keep going and you have to believe in yourself and that you understand your body.....x

  • Just annoys me we pay tax etc and national insurence.. Yet seems to be if your a drug addict you get seen to. If you have major pains that stopping you from working and living day to day normally they just fob you off. Iv been of work neatly 2 months I think it will be now. Dreading payday as it ssp. I read abit on the Internet and from what iv read most people only suffer more with pain on there period?? Mines nearly every day. Had a good day Wednesday and thought Yay ill be back to myself soon hopefully then yesterday was bad again. Iv have an appointment soon with geuoncolgy. Doesn't say what they will do on the letter Tho. Got a feeling it's going to be a case of sit and get told there's nothing that can be done.. blah blah. They didn't even do swabs when I first went in hospital I asked them the second time they said they weren't done as I don't fit in the age group for ovarian cancer! So no need to do them. I was shocked!!

    I have a waddle round town some days. After about 15 mins of walking I'm like I need to go sit down. Becoming a chore now. X

  • So I have Been for my geauny appointment. Yet another doctor. Did internals yet again! I said that all the others have said the 99.9% it's endo.

    Yet this one was like we'll I think all looks normal. I won't do a lacopsy unless I feel I need to.. so after making me out to be a drama queen says I'm booking you in for a lacopsy.. bit confused! As he contradicted himself after having me in tears!

    Did anyone else's go like that? Or could they tell before the lacopsy.

    He said why do you think it's geauny related. I said because I no my body. Witch shut him up!

    So just got to wait for appointment

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