Can't be dealing with this anymore :( - Endometriosis UK

Endometriosis UK

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Can't be dealing with this anymore :(

7 Replies

Since I was 17/18 I'm now in a weeks time 24 I have suffered severe period cramps, dizziness, severe fatigue and mood swings, hot sweats etc you name it. The Dr's put me on the contraceptive pill to supposedly help them, I'm just convinced they've made them a lot worse over the years.

In the past 2/3 years it's gotten worse and I am now physically sick the day before and then every day of my period (that lasts a good 10 days!) and bed bound. I'm also always rushing to the toilet and the gas is another thing (so embarrassing!) I feel also the only way to describe it is when you're having sleepy gas for an op at hospital to be put to sleep. But your body is still in severe pain. I just can't physically and mentally do anything. It's even worse when I take tranexamic acid and codydramol as prescribed by my Dr's to just 'get on with it'. They do nothing for me at all and in fact just make me throw up even more.

I've been fired from a job because they just didn't understand and I felt it silly of me at first to tell them the real reason for my absence. Even when I did they were nasty about it. I then managed to get myself an office job and luckily the first 8 months I had my periods on weekends so by the time I went back to work I was okay. Then they started becoming really irregular to the point I was convinced I was pregnant (I wasn't) I got called in to the office numerous times and told that luckily I was having to be made redundant any way as the company was closing or I would have been more than likely to be sacked, again, because it wasn't a good enough explaination.

I've now been out of work for 10 months and whilst I've been looking forward to getting back to work again now that an opportunity has come up that is going to be a very demanding job I just can't help but feel like the same things are going to happen again. I have noticed I snap out at people that don't understand without wanting to, one minute I can be crying non stop literally unable to stop myself feeling the most depressed I've ever been, the next wanting to hide myself away and my anxiety goes something crazy! I feel like it makes me have two personalities every month and I'm so done with it :(

I've just come out of a 10hr sleep as the only thing I can do to help myself is sleep. I've been told I've got a job interview Friday morning for another office job and what once I would've been overjoyed at I am actually considering not going as feel it's pointless and I'm so down I'm in this much pain and its holding my life back. I'm trying to do all the best I can to try and work for myself as I can't see another way around it but with bills to pay and my redundancy money now very low it's a struggle!

None of my family or friends understand at all and say it's just 'hormones'. I feel like it's going to take me forever to find a doctor or specialist who will take me seriously and investigate further.

If anyone's got any tips or advice etc I would be so grateful and would love to hear your stories.

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7 Replies
hellybaybee profile image
hellybaybee

My hormones were crazy at your age! I would feel like I could punch somebody who looked at me the wrong way! (Obviously I didn't) strangely the rage calmed down as I got a bit older but the other things only got worse. The vomiting isn't normal - I recently went to a gynaecologist recommended through this forum and was told that actually vomiting is very rare. The problem with things like endometriosis etc is that the symptoms are hard to differentiate from period pain for doctors. I think that you know yourself what is normal and being debilitated in such an extreme way is not normal. I would look up your nearest bsge centre and tell your gp that you want to be referred there. If you ask for a referral they have to give it to you

in reply to hellybaybee

Thank you! I know I feel I'm constantly back and fourth explaining my symptoms. I've even been carried in there bent over in tears and agonising pains but they just prescribed me more of my tablets and told me to consider trying another form of contraceptive. I've already tried a good few of these and found it's actually making it worse so I can't see anymore working. They also tried to tell me that sickness in periods isn't 'uncommon' and that it's just the bodies way of coping?!

I've now started a 'pain diary' and going to take it with me to the doctors and demand I get referred.

JackieBo profile image
JackieBo

I'm so sorry to hear that you're suffering so much.... but I'm also slightly relieved to hear I'm not alone. I'm almost a decade older than you, but I'm to the same point you are now after years and years of pretending like everything was fine and just pushing through. It. Sucks.

I don't know what the solution is as my doc keeps telling me to wait to see if being on birth control again helps (spoiler: it hasn't)

I just had to call in today AHgain and the woman who answered the phone, who knows what is going on, asked me if it was "just period pains" and told me if it was "that bad", I should go see my doctor today.... like they'll do anything.

I stared bawling after I hung up because it feels so demoralising to have someone undermine what you're going through. It isn't like I want to miss work! I love my job and I don't want to risk losing it.

I'm so sorry you're having such difficulty with your employers! That's the one area I've had a bit of luck with. My direct manager has been such an ally and has been in my corner, but I'm pretty sure any previous job I have had would have fired me by now - I've been averaging 5-8 absences a month now for the last three months and it just seems to be getting worse with each passing month.

Hang in there! You're not imagining it or being dramatic. People honestly can't understand if they haven't went through this. I'm so sorry you've had such a lack of understanding, but you aren't alone. ❤️

in reply to JackieBo

Ow I'm sorry to hear you're going through it too! But no you're not alone. It really does suck doesn't it. I thought I could go along pretending I'm ok and pushing through also but now it's getting worse and it's affecting my life I know I've got to face it now. I think I was just too scared before to admit it. In fact I think I convinced myself it was just normal. It definitely is not.

I would do what I plan to do and demand to be referred.

I remember doing and feeling exactly the same way as you when I was working. It makes you feel ridiculous and less of a person doesn't it? 😔 It's so difficult because I don't want to let it get the better of me and win but at the same time I don't know if I'll ever be able to work a 9-5 office job again after all the agro and lack of security of being let go constantly. It's made me such an anxious withdrawn person. People that haven't been through it just don't understand. In fact I didn't even know there was such a thing until I had enough of the pain and researched it.

I hope you can get some more answers too ❤️

Eclarke profile image
Eclarke

Hi Hun,

Im 21 and going though a really similar situation to you and it defo sucks!

Committing to a full time job and trying to cope with everyday life is so so hard.

The best thing to do is have an honesty policy with yourself & employers.

At first my employers were really unhelpful, pulled me into meetings and made me think i was loosing my job.

I have my first laproscopy on Thursday.

On the positive side of things you are not working at the moment which means you need to get yourself to the GP and keep going back even on days when you feel a bit better!

I stopped taking tranexamic as it made me sick as well (im actually allergic) I do take mefanamic acid which is strong anti inflammatory and seems to help a bit when i have my period.

Start keeping a diary i do mine on my notes on my phone, include the date, if you are on your period or not, how you feel emotionally, pain scale and any other symptoms this will come in handy when you get referred to gynecologist... note that i said WHEN.

This will happen, just remember that you need to be persistent.

I struggle to get up most days and when i have my period i am literally a zombie! I get myself in a state, cry and feel emotional for days, and then start to feel depressed because you feel helpless.

I made appointments with my GP every week and kept the appointments even if i felt a little better, ask for a blood test to see if your anemic it might be why your tired, i also asked the to check my hormone levels.

My first GP appointment after i moved towns the doctor basically laughed at me told me that because im only 21 it validates having painful periods ... let me tell you it does not!!!

even though i am scared about having the lap on Thursday it has really made me see light at the end of what i thought was a never ending black tunnel of doom!! (dramatic maybe)

Its important to nap when you feel tired but maybe dont sleep the day away because when i do this it makes me feel super down and emotional! Sounds silly but wake up have a shower, put some makeup on it can lift your mood so much!

I hope you start feeling better soon and get the help you need <3 xxx

in reply to Eclarke

Thank you lovely! ❤️ I've got myself an appointment booked with my GP tomorrow.

I just think I've held it off for so long again because they were useless before, made me feel dead silly and I guess I was and still am scared. My Mum had problems at my age although not endo. She suffered numerous miscarriages and only found out she had this problem (I can't remember what it was but was pretty dangerous to her fertility) when starting to try and conceive. She was one of the lucky ones that ended up falling with me when she was told she probably couldn't have children. I think that's what petrifies me the most - my future.

But a diagnosis is better than none!

All the best with your laparoscopy! xx

Eclarke profile image
Eclarke in reply to

Yeah honestly as silly as it sounds try not to worry and just literally drive your GP mental until they hate you and have to refer you to someone who actually knows what they are talking about.

Dont worry about your future just focus on right now.

Literally a few weeks ago i was sooooo depressed, if you see on my profile youll see i wrote a very similar post to yours, but things will get better. try not to look loads up online either i think i scared myself and it made me worry about something that i could potentially not even have. This forum is really great and once you start moving forward with appointment you will start feeling so much better.

Wish you all the best, stay happy! xxx

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