Beyond tired.

[quintintle]

I'm so tired of this. I was diagnosed in November after a laparoscopy and 2 years of pain, recurrent cystitis and getting ill all the time (I know I'm lucky to have been diagnosed so quickly!). I didn't really know what to expect after the lap but to be honest everything has gotten worse. Sometimes I wonder if it's all in my head but I know it isn't any more. I feel like I should fight all the time and some days I can, I can smile, laugh, get on with life through the pain and then there are the days, nights where I just cannot. This is one of those nights. I work 2 days a week and then I'm exhausted. I have so much pain right now, constant, hot, poking. The sort that makes me want to chop myself in half from just below my belly button and just get rid of it.

I had a mirena put in a week and a half ago after much reluctance (but that feeling of submission, like I have to try everything, and I do) and it has been rubbish. The procedure was so painful, more than I was anticipating and I've had strong pains since, ones I know somehow are like labour pains even though I've never had them! Plus the many different aches and pains of endo. I will stick with it but I find it hard to adjust to what feels like this new life of constant pain, medication throughout the day and tiredness. I've had to reassess my life, it seems. My dreams are just to be happy, comfortable, loved, loving!

I could say so much more but have already said a lot! I see so many similarities in many of our stories. What a horrible disease this is. I don't know what this little ramble is about, I'm just lonely tonight, been sitting on the sofa since I got in from work and still willing myself to get up and eat something or even just get into bed and give up for today. I think I needed to get it out and am glad to have found this place which seems so genuinely supportive and kind.

Warm wishes to you all x

[Amb43]

Sending hugs xxx Had a painful and low day too today. xxx

[marblesgone]

Big hugs and plenty of empathy.

Currently in bed with migraine, cystitis and pains in lower abdomen like the labour pains you refer too. Just waiting and hoping the pain killers and hot water bottle will set in as got a mothering Sunday meal to do!

Hope you're feeling better this morning.

It's always good to talk on here; the only true ones that understand.

xx

[Bexyrich]

Thinking of you, and I understand your pain and frustration. X

[squidgy]

Thank you for sharing your story. It is a good place to offload our worries, pains, emotions etc. As you know that everyone on here can sympathise and understand your frustration and pain.

Sorry to hear you are suffering so much with it at the moment. Hope you are feeling a bit better today.

Sending you squidgy hugs xx

[quintintle]

Thank you all for your words, tried to reply individually but get an error message.

Amb43, I hope you have a better day today and feel less low.

marblesgone, same to you, I hope you've been able to make the meal you wanted to make and are feeling ok.

Bexyrich, thankyou for your understanding, hope you're ok today.

squidgy, thankyou for your hugs!

I've had to have a busy morning getting things ready to see my mum and am relaxing now before she gets here with a hot water bottle. Feeling ever so tired but it'll be good to see her. I hope you all have a good day today.

x

[Juleyanne]

Hope your feeling better when you read this! I know what you mean. Today I have been trying to ignore but failing the awful pinching pain in my right pelvis deep inside my hip, they think it's adhesions now I'm menopausal with endo history. Anyway, makes me feel sick and tired all the time. I tend to stay in at weekends and I need to paint the other half of my lounge. One side is yellowing the other white where I ran out of paint, got some but the pain is stopping me continuing.

Even sitting typing this is painful but desperately trying to take my mind off it in any way I can.

No doubt I will take another Co Drydamol or two very soon, can't bear it much longer but taking codeine constipates so have to take with loads of stool softeners and even laxatives and anti spasmodics, it's a total nightmare! I am sure I look like a tramp these days, my appearance is hard to maintain when you have this much chronic pain! You are not alone, we totally understand.

[quintintle in reply to Juleyanne]

Hi, completely understand what you mean! I hope the codrydamol helped you today, it's so annoying when the side effects cause so many other knock on problems. I hear you about the appearance things too, it upsets me sometimes but other times I just think there are bigger things like getting through the day! It's hard though. Sending you warm hugs and hope you can get your painting done soon when you feel well enough.

[Impatient]

Next time you have a smear or Mirena issue, ask for referal to local hospital gynae unit, where the prcedures can be done while you are on pain killers and also taking entonox (gas and air to help you cope with the pain). You should not have to put up with agony while having these procedures. If you have endo and pain in the vagina and cervix from endo, then insist on anaesthetics for down below procedures. You have every right to have them done with anaesthetics.

[quintintle in reply to Impatient]

Thankyou, I think for any further investigations I will! I haven't had a proper smear yet as I've just turned 25 but have had many internal examinations and they always hurt. I think the doctor underestimated the pain I was in to begin with and how much it would hurt during. I had to put it off the first week because I was in agony and had started breakthrough bleeding on my pill, I was in such an emotional state but she prescribed me diclofenac which definitely makes a difference but doesn't block it out completely. I took a tramadol before I went in too! Oh well. We live and learn! Thanks again and hope you're ok.

[lm330]

i know how you feel. xxx

[quintintle in reply to lm330]

Thankyou, it's helpful to know we're not alone. Hope you're ok today xx

[lm330 in reply to quintintle]

hey quintintle, i couldnt agree more i think i would go mad without you guys. it so often feels so hard, and its definitely helpful to know that there are so many other wonderful ladies who are going through the same thing im not having a good night unfortunately. hot and cold and in so much pain i cant sleep. my boss wants to meet tommorow to talk about putting me on unpaid temporary leave due to my endo related absences... when will people recognise endo is real? hope your night is going better. hugs xxx

[quintintle in reply to lm330]

Sorry you're not having a good night. I've woken up in lots of pain. Ugh. Sorry to hear about work too, how awful. So many people just don't understand, it must be hard though, it's always difficult to know what pain is like when you're not in any. But work should have a duty to understand, it's messed up. I hate it, trying to explain to people who just do not get it. I would rather be well and able to work with no concerns ever but I wish endo was recognised for those times we just can't. Anyway, I'll be thinking of you today, I hope the meeting goes ok - is there anything you can take to help explain what this is like for you? Will your doctor be able to help in any way if they do make you take the leave? I'm not too clued up on these things, but I wish you the best possible outcome and hope you've managed some sleep/pain free moments xxx

[lm330 in reply to quintintle]

hi there its ok it happens. im sorry you woke up in pain too. that sucks. i cant remember the last time i slept through the night. well ive managed to put off the meeting until tommorow, and have arranged a meeting with someone more senior in the organisation. ive been worried about telling ohter people about endo at work because of my supervisors reaction and lack of support, but ive decided its worth trying to get someone else on my side. i know its not the same but this particular lady im going to see was very supportive to my friend when he had cancer and needed time off. totally different i know, and my God I would not begin to compare myself with what he went through, but the point is he said she was super lovely and helpful so here s hoping that i can get her on my side. am actually starting to feel like a break from work would be great as i really wanted to try zolodex and ive got some steroid injections lined up for trigger points to ease my pain down below (we shall see...not optimisitc). the only thing is obviously the lack of money. its so stressful that they dont understand that i have bills to pay etc? as you say i wish people would understand endo is real. it gets on my nerves. and this concept of taking unpaid leave until i get better...its a life long chronic condition. i will not be getting better...mangaing my symptoms maybe but i will never be cured. i sent my supervisor links about endo 3 years ago when i was diagnosed so she knows all about it and ive told her in detail about my operations. im not shy when it comes to makin people understand what im going through, but she is very career oriented, machine like, never ill, and i dont think she understands. she has no family etc just her job so i think she doesnt have any idea what it is like to have anything but work to worry about. urgh rant over...i cant sleep now as im worryin about both meetings tommorow. so worried if i say the right thing or not...they have a way of twisting what you say.wish me luck night night xx

[quintintle in reply to lm330]

Sending lots of luck and positive wishes your way! Will be thinking of you xx

[shaz1966]

hi ..... my thoughts are with you .. you have just described exactly how i am feeling .... can i ask if they have checked your uterus for cysts because i have just been diagnosed with having cysts there and like yourself im in pain 24 hours a day they are not easy to detect apparently so my gynecologists told me .... after five years of this pain i decided i wanted to see a different gynecologist after he did an internal examination and i had come down of the ceiling with the pain he told me it could only be one thing causing me this pain and that was cysts on the uterus he offered me the mirena coil which i have already got and he said because the mirena coil was the other option and i was so tender inside other option was to have a hysterectomy which i have agreed to and this is happening at the end of march ( i actually feel so much better in my head because i found a doctor that believed in me and understood what i was trying to say ).

the pain killer that i have been prescribed by my GP is a controlled drug TARGINACT (Oxycodone/naloxone) 10/5ml they are strong and work .

take care xxxxx

[quintintle in reply to shaz1966]

Thankyou for this. The lap showed I had a lot of endo on my bladder and some in the pouch of Douglas plus on my abdomen wall and an adhesion on a Fallopian tube but nothing was said about cysts, I do think there's more going on though and I don't know whether it's that things have gotten worse since the lap or if they missed something, I get terrible bowel pains too and I feel like I might have endo there, plus bad sciatica which I wonder might be related sometimes. I'm only stage one though, although the said the upper end of if, whatever that means! I'm rabbiting on here, but your post has helped me to feel that I do need to go back and express these concerns and see if they can do any more investigation. I'm so glad you've found a doctor who has listened to you and hope your hysterectomy goes smoothly and improves things. Take care too xxx