Feel like crying...: Feeling seriously down... - Endometriosis UK

Endometriosis UK

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Feel like crying...

livibean profile image
16 Replies

Feeling seriously down at moment. Pain is constant now, do not have anytime when I am pain free. Waiting for lap, but struggling to deal with pain. Don't know what to do as tablets don't work. Just feel like crying but if I do people think I'm being silly. Not sure how long I will have to wait for lap...gynae said she put down urgent, but not sure it will be as they don't believe I even have endo. Total nightmare...

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livibean profile image
livibean
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16 Replies
missteal profile image
missteal

Big hugs, I know exactly how you feel!! What pain killers are you on? Probably worth going back to the gp to get stronger ones if the ones you're on aren't working.....good luck with the lap, an urgent one is up to 6 weeks i think x

livibean profile image
livibean

Thanks. I'm on tramadol and naproxen...next step is morphine I think.

I was told could be 2-3 months

foosey profile image
foosey in reply to livibean

Hiya, sorry to hear you feeling so low and in so much pain. That is something everyone on this forum can understand because we are all going through the same thing. I found Trmadol didnt work for me either as a painkiller but just tends to knock me out for a couple of hours. I was in the extreme pain a few weeks ago and rang and spoke to a MALE doctor who was very rude me when I asked for something else for the pain as Tramadol were not working - all he offered me was tablets I had already tried ( mefernamic acid, cocodamol & diclofenac ) over the past 4 years. If he had actually read my medical notes he would have known this. He said the next thing up from Tramadol was morphine and he wasnt going to prescribe this. The stupid man had me in tears on the phone. Endo is a very misunderstood illness and its about time it was recognised as the disabilitating illness it is. Please dont feel alone we are all here for you. x

katrinakilshaw profile image
katrinakilshaw

O no bg hugs hunni i waited 3 amd months for my lap both times and mine were 'urgent' both time.

Id deffo go back to your gp like missteal said i was on tramadol for a while and in the end they just didnt work as good i got put on dihydrocodiene and liquid morphine and they do work but make you spacey.

I hope you get something that works for you fast and hopefully have ur lap soon xx

hi i sypathathise i am on co codamol , naproxen , bupronorphine patch and oramorph which only just take the edge off the pain when it is bad swap naproxen for mefenemacid acid sometimes but it gets so bad i end up back in a/e for iv morphine which sorts me out after bout 3 doses !!! currently on decapeptyl injections for which i am 10 weeks into treatment but with no results as yet! i really have empathy with everyone going through similar i just want my life back xx

nadz profile image
nadz

Hi Hun, hope you start to feel better soon. I also know exactly how you feel. I'm on paracetamol, diclofenac, OxyContin slow release as well as Provera because I haven't stopped bleeding for 2 and half months. I am also on Prostap injections which so far haven't done anything for me. I am desperately waiting for an appt for surgery as am off work and this time was on a formal warning that any more sickness could result in losing my job.

I'm in too much pain to work and am just exhausted from this illness.

Hope all you girls reading this get sorted soon xxx

Hope its a short wait for you. I know the pain. Was in agony for 9 months before first lap. Took a third lap to make me in less pain but its recurring now for me. They didn't believe anything was wrong with me for 17 years until they did first lap then saw it!! stay strong. xx

Pearlavery profile image
Pearlavery

Hi hun. Apart from the bit about them not thinking you have endo your situation is very similar to mine I've even gone to the lengths of paying to see my consultant to spread things up very frustrated and as you say upsetting your not being silly it's the pain and hormones mixed together only thing I can suggest is that you go to your GP ask them to write on your behalf also contact your consultants secretary and ask where you re on the list Good luck and know this you are not silly you are coping with a chronic condition which is painful and debilitating xxx

Juleyanne profile image
Juleyanne

Because this is a womans condition and because generally it doesn't kill you it is not taken at all seriously, leaving millions of woman around the world to suffer years and years of often undiagnosed pain and suffering and the consequences to a womans life can be devastating.

Endometriosis and adhesions complicated by Diverculitis has ruined mine. If you consider that only in the last few years they have started to realise the link with adhesions (scar tissue) and how each surgery can make this worse, along with the knowledge that endo can grow it's own nerve supply and when you consider that it often spreads throughout the pelvis and abdomen and can affect the bowel, bladder and other parts of the body, I think it would be fair to say this is an extremely debilitating condition and is notoriously difficult to treat. This is usually compounded by the fact that it can take 7 to 10 years of GP visits, referrals, investigations and operations to confirm the presence of endo/adhesions! Fast diagnosis is key and early intervention can help prevent more prolific problems in years ahead ultimately costing health services millions, including the availability of the most effective adhesion barriers. A vastly better understanding of this health condition by Gps, Consultants/Surgeons and wider public knowledge along with training more endo/adhesion specialists worldwide remains the answer.

Chrissie66 profile image
Chrissie66

Hi Livibean, and first of all, huge cuddles. If you feel like crying, do it. God knows this disease dictates enough of our life to us, if we can't even have a cry when we feel like it then it's a bad business. You're not being silly at all. You're exhausted by the pain, and that is perfectly understandable.

Secondly - and I don't very often condone this because as somebody else said, endometriosis isn't life threatening and I worry about ladies who use this as a general option because I think about people with life threatening problems and injuries who might not get treated because these ladies are 'bunging up the system' - but if your lap isn't soon, and your doctor isn't listening, take yourself to A&E.

For a start, they will give you something for the pain that actually works, and secondly an A&E visit on your file won't hurt with bringing your lap forward.

Lastly - I got quite teary myself reading through this thread. The only thing that touches my pain is pethidine, I have grade 4 endo which thank God my consultant recognises, but my GP has suggested in the past that much of the pain is In My Head. No, it's not. It's in everything below - well, below my boobs, basically. To read that we're all going through the same things makes me really, really sad. I'm sure we all understand that there is no cure, no magic fix, but when even the doctors aren't taking us seriously, how are we supposed to cope?

So sending love to everybody today. This disease has a lot to answer for

C xxxx

uglyduckling profile image
uglyduckling

Hi,

I am so sorry you feel like crying, do it, I normally end up crying, because: I am in pain; tried because I can not sleep due to the pain; or I feel like no one believes me, I hate it when people say they know you are in pain and you sit there thinking no you have no idea what I feel even if you say you do, and it really bugs me when people say it is all in your head or there are other people out there that our worse than you, when you have disease you really do not care to put it bluntly.

I have been to A&E so many times because of the pain because it felt like it is killing me and not every time will they help me, I have been told by them before to go back to my doctors and I have said to them before that the doctors do not help me.

The only thing that SOMETIMES helps me is to get a hug of my boyfriend but because I only see him at the weekends it sometimes it too late.

If you need to talk message me.

Kind Regards

Emma

hi ladies i sympathasise i have virtually constant pain to almost monthly end upback at a/e due to severe pain when its really bad omly iv morphine touches me even then i need about 3 doses i have also been asked if it is in my head and feel like crying most of the time

livibean profile image
livibean

Thank you ladies for all your support, it really means a lot to know there are people who understand what I am going through.

It really is an awful disease and really does need to be recognised as such.

Pain is horrendous at moment, just worried about getting stronger pain killers as think I am already addicted to tramadol seeing as I've been on it for nearly 3 years.

At a loss at moment, just feel it's a constant battle getting doctors to believe that it is real pain, and not in my head...my last appt with gp they doubled my anti depressants as thought pain related to my feeling down. At the moment I feel like I rattle with all the tablets I take...that and walking round like a zombie...

My heart goes out to all you ladies.

Liz xxx

fleurbie profile image
fleurbie

Hi Liz,

I feel your pain too! It is so frustrating that doctors do not show they are taking what you say seriously. Cry if you feel like it, I do! I have days where I go and hide in the toilets at work and cry because of it. Lack of sleep does not help anything.

People (doctors included) don't understand the pain or how it affects people's lives and all aspects of it.

I had never had a day off sick until after my lap. I found the symptoms got worse after surgery. Some days it really is a struggle to make it to work, and the days where I really feel I cannot, I spend the whole time worrying about what my employer will think and about losing pay.

Do not give up on your battle with the doctors, make a nuisance of yourself and they have to listen! It is far to common for women to be fobbed off with 'it's in your head' or 'it's period pain'.

I really wish more was know about this disease.

Fleur x

fleurbie profile image
fleurbie

Oops, I mean known*

Emma1984 profile image
Emma1984

Big hugs, I've just had my lap 2 days ago, feel empty down there, really weird! I waited nearly 3 months for my appointment but I feel more contented knowing that hopefully my next period will be better. Chin up chick, it can only get better, think positive x

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