Endometriosis Pain and no sleep.

I'm 26 years old and have been married for over 2 1/2 years. I've been having pelvic pain for over 2 months now. My first experience was around my ovulation time and at 2am I thought I was in labour. Considering I've never had a child I got a few "really?" looks from the doctors. But that's the only way I could describe it. Severe pelvic and back pain with an overwhelming urge to urinate (nothing) unable to lie down, stand straight, ending up in a half crooked position digging my nails in to my beds head board and actually doing breathing techniques to help me not to pass out.

Since then its been a battle with various pain and other symptoms. My doctors have tested me for everything and ruled out everything except Endo. I'm now waiting for a referral to see a gynaecologist specialist.

Both my docs believe it is Endo and there is a family history of it through my dads mum and sister. I can cope with the pain to a degree but its the lack of sleep that is sending me over the edge. Most nights I wake up 1am, 2am, tonight it was 11.45 and 3am. Its affecting my work and my sanity! How do you sleep?

I've started having pain while being intimate (I've never felt pain like it! It was excruciating!) now I get pain every time my bowel or bladder is full. With being Type 2 diabetic I used to wake once in the night and then go to sleep. But now it triggers pelvic pain which wakes me up. I urinate I feel a pain relief but not completely and then cant get back to sleep for a few hours. A 3am wake up call with a couple hours of settling back to sleep knowing I have to be up at 5.30am to get to work actually makes me cry. I cry more knowing I'll be here around the same time tomorrow.

34 Replies

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  • Awww I'm sorry you are feeling like you do hun but a bit of comfort knowing many of the girls on here know exactly how you feel. I don't have children but also describe my pain like I'm giving birth, I'm literally bent over on all 4s breathing as if in labour and digging my nails into the bed. I was diagnosed with endo in may 2013 so your symptoms sounds like you have got it. What pain meds are you taking? I'm currently taking diclofenec, omeprazole, co-dydramol 30/500 everyday then when it's that time of the month or the pain is so serve I have tramadol which help once in my system but make me feel high as a kite so can't function or work when I take them and I can't sleep either. I've been up all night myself not slept a wink on the tramadol. I'm not sure if that helps hun but you sound the same as me and these tablets do help alot more than anything else I have taken and I've tried loads. Oh also my doc prescribed me amitriptyline it use to be a anti depressant but is used now to relax muscles and help you sleep and they work a treat for me apart from when I take tramadol, nothing let's me sleep when I've had tramadol.

    Hope that helps a bit hun. Sorry for the tramadol ramble I can chat for hours when I've had so many xx

  • Hi, thanks for replying its good to speak to someone who understands. I was on Mefanamic acid but now I'm on Naproxen 500mg and paracetamol. I've had tramadol in the past to treat my prolapse disc and sciatica. But like you I couldn't function and made me severely constipated so had to stop taking them. I don't mind chatting helps me keep distracted from it all. At the moment it just feels like someone is pulling my insides down. Its a strange and uncomfortable feeling. I work in an office of 40 men and 1 other woman. Its hard to explain to my boss whats happening to me. I've lost loads of work days from pain and exhaustion. x

  • I'm the same been suffering from Endo, IBS, Cystitis. Burning and stabbing pains keep me awake at nights, I can't even sleep on my left or right side. No pain killers work for me. I just try and breathe through the pains and cry. I'm so tired all the time. I'm not eating properly due to the pains. i feel like ripping my insides out at times. I would love to have a good nights sleep without pains and waking up in the morning without feeling exhausted.

  • Sorry to hear that. Pain killers are hit and miss for me to be honest. I feel the same about ripping my insides out sometimes. Its such a crippling condition. I miss days when I'm not exhausted too, it makes every day seem like forever. The nights are the worst because you have no to talk to and you can't concentrate enough on anything to distract you. x

  • That's so true, my hubby works nights so I'm alone at home no one to talk to. I'm Due to have an operation in 2 weeks time, I can't believe NHS missed Endo everywhere, I'm so angry with them. I'm having my op done privately, I have no idea how I'm going to afford it.

  • I find the NHS is selective in their treatments. If they feel you can live with it you're stuck unless you search for a good GP or go privately. My husband is home at night but he has Chronic Obstructive Pulmonary Disease and needs his rest. He struggles with his own condition and I try to take the pressure off him. However the stress of him struggling to breathe at night I'm sure makes my pain manifest itself. A never ending cycle. I'm sorry the NHS aren't helping you more. I hope the surgery works for you in finding some relief. x

  • Oh no! That must be stressful for you. I hate stressing and worrying my hubby about my pains but he always know when I try to hide it from him. I have had 3 operations on NHS due to Endo, I had an op done in June this year where they burned of Endo inside my bladder, i asked them to check on top of my bladder while I was under, they said they would but didn't, if they had they would have seen the huge Endo sitting on my bladder, ovarys, bowels, Virginia, rectum, everything is stuck together.

  • Its definitely a hard battle between sharing your problems with your partner and protecting them from it. Thats awful. I'm having bladder and bowel pain when they're full and a slight relief when I go so I could possibly be in a similar situation to yourself. It makes me worry if I go out without a toilet nearby in case I get pain. I love to hike in wales with my husband like we did in the summer but now I'm afraid. As daft as it sounds. x

  • Have you had scans done? Has anything showed up on them? I miss my old like, I miss working, going out with hubby, going to family gatherings, I miss eating. all I do now is stay at home either in bed or sofa, can't do much housework, I don't leave the house. Non of my close family understand what I'm going through so can't really talk to them.

  • I had an ultrasound and internal scan a few weeks ago. It showed everything as normal with no cysts etc which was a relief as my aunt had cysts and Endo. My gran just had Endo. I know how you feel its hard to explain it to my husband but he tries hard and helps as much as he can. Luckily (if thats the right word) I can talk to my aunt and grandma about it. I'm having a swab done on Monday to assess the tissue in my uterus for anything abnormal. I'm sorry its affected you so badly. My pain is getting more frequent and prolonged each week. My husband doesn't work do to health so we cant afford for me not to work. I hope it doesn't get as bad as yours. :( x

  • Your lucky you have your aunts and grandma to talk to, non of the women in my family have Endo I'm the only one who has it. I have just found out my operation is next week Friday. I'm So scared.

  • I know its hard but try not to be scared. Do you have a favourite music? Something that calms you? I know this may sound daft but when I start to panic or get scared I put on the music I got married too and look through all my wedding pics and holiday pics with my husband. It reminds me of all the good times we've had and all the ones we're yet to have. Endo is a really *beepy* thing to have but you have to stay positive. You'll be fine. xx

  • Thanks for the advice, I do love listening to Meditation music, as it does calm me a lot.

  • Thats good, you're welcome. Feel free to message me if you want to talk again in the future. I hope your surgery helps relieve your pain. x

  • Thank you, hope you feel better soon yourself.

  • hi, am so sorry to hear the pain you are in. i to have had 3 lots of pain that i can only describe at being in labour, nothing made any difference. I had a scan and they found a cyst (8x8cm) then the waking during the night started so i went to the GP who was lovely. I was on ibur and 8/500 cocodamol. she upped me to naparxen 500mg and cocoda 15/500, straight onto senakot. she said come back if that combo didn't work, but it did i could sleep through the night minus the one wee i needed but no pain.

    a lap just over a week ago removed my cyst and confirmed endo, i have tramadol on standby if i need it but hopefully the surgery has sorted it all out for me :)

    hope that helps you :) xx

  • I'm glad you're on the road to hopefully a long term/permanent pain relief. I've booked myself in to see the doctor for help sleeping next week. I've had an ultrasound and internal scan which thankfully has ruled out cysts on the ovaries. I'll ask them about a medication schedule that will help me sleep through. Thanks :) xx

  • I definitely would recommend the amitriptyline for the sleep girls. They work a treat for me apart from when I'm on tramadol. Make sure you take them about 7pm so you don't feel to sleepy the next day. I take 2x10mg of amitriptyline and that does it for me and as long as I take them between 7-7.30 they don't make me feel to bad the next day, just a little harder to get out of bed in a morning.

    I have 10/500 co-dydramol which is stronger then co-codamol and also have 30/500 of co-dydramol. I take the lower dose when pain isn't to bad then go to the higher ones when it's bad and if no luck go onto the tramadol but still take the co-dydramol. They do cause constipation so gp prescribed me laxido it's like a salty orange drink.....nice. Also got anti sickness cos I always feel sick of all the meds.

    Ankers why don't you print some info off the Internet and give to your boss and ask them to read it, they have a duty of care towards you so maybe that would help? Worth a try but working with 40 men and only 1 women I can imagine is difficult hun.

    Sebb

  • Whoops pressed submit by mistake then. Seb did you have your endo burnt or excision surgery to remove it hun? X

  • emmaibiza- i am not sure, i know they could not get rid of all of it as it was too attached to the bowel and they couldn't seem my ovary/tube on the left :(

  • Ohh no thats not good. Have you got a discharged letter? Hope you feel better soon sweetie. I've had my endo burnt off but it's caused loads more pain they said from scarring or something so I've changed hospitals and not waiting for them to cut the endo away rather than burning it and apparently it will never grow back in the same spot after that but it can still grow in new places. I didn't know there were to different ops till I changed hospitals x

  • discharge letter does not state endo removal method, but i shall bare that question in mind for my follow up in 7weeks.

  • Oh the nhs r lovely when it comes t endo like aren't they. I got diagnosed when I was 26 I'm now 28 and it got tht severe within the 2 n half yrs tht I had hysterectomy bak in march I opted to keep one ovary as had never had problems with that ovary but 3 wks after hysterectomy I was being rushed into theatre after attending a&e in agony and they found via ct scan that I had a large cyst which had blocked my ureter so my kidney was distended and damaged as it was unable to drain. I am now on hrt for the next 20 odd yrs but still have issues as the endo damaged my bladder so have to use catheters and has affected my sciatic nerve and bowel so am on a weird concoction of pills. I take 40mg mst every 12 hrs n have oramorph f breakthrough pain. I also have diclofenac codeine n paracetamol. none of which touched the nerve damaged pain so I now have amitriptyline and gabapentin for that but I still wake every now and then and if i have tried eating anything bigger than a kids meal I am awake all night . I also have to use crutches because of the nerve damage. Hope u get sorted out soon . There is info sheets on here that explain endo quite helpfully tht would help ur boss I used them to explain t partner and family and job centre lol. Emma ibiza do u find the anti sickness tablets work for y as I have 3 types and they don't always work. Good luck to u all anyway if cn help at all feel free to message me x

  • Hi spammie I've got prochlorperazine buccal tablets and they use to work great but not quite as good now. Seem to not work when I'm bad with the pain and taken codeine and tramadol and when I mix them together I can't eat so i think my stomach just can't handle the strong meds on a empty stomach. Have you tried them?

    I'm sorry you are having such a tough time sounds like you have been through alot. It's hard for anyone to understand what us endo girls go through but I found printing info for people who were interested helped alot and they have been alot more supportive since x

  • I have them and cyclizine and ondansetron have now been given metoclopramide injections for when they don't work. I found each one of the anti sickness worked f so long n now it just ridiculous. I've lost ova 2 stone in 10 wks it driving me mad. u sound like u had a ruff time of it aswell if i can help at all or u just want to talk feel free to private message me. x

  • Try Melatonin (from 4mg up depending on the pain)

    x

  • Sounds like a big cyst to me nada don't play down the pain. I have laboured on a cyst, (unknowingly), it was excruciating. If it's a dermoid cyst you need an MRI to see it. Scans and barium meals made no difference to me. Hence preg and emergency cs after it started to rupture and send everyone into distress.

  • I swear by amitriptyline, I’m not sure how I would cope without it as I’m sure I wouldn’t sleep at all. I have to take tramadol every day although the dosage goes up and down depending on the amount of pain I am in. I however take a 100mg of amitriptyline because making you sleepy is a side effect and the main reason the doctors prescribed it is that is helps to cut down on the amount of pain you feel if you take it continuously. They are not really sure how it works but it can really help. Xxx

  • Sorry if I haven't replied to all of you but I have read them and appreciate all of your input. I'm back at the docs tomorrow for a swab of my uterus for testing so hopefully I can discuss some options then. I woke up this morning to my first time spotting between cycles. I'm not due for 5 more days. Definitely threw me a bit at 6am this morning. But push on we must. xxx

  • I know exactly what you mean! I had the exact symptoms as you, I was woken up in the morning thinking "I'm in labour!" even though I've never been pregnant, but it's the only way I could describe it!

    I constantly feel like something needs to come out of me, like I'm having contractions or need to pee.

    I've been referred to a gynae specialist, my appointment is in 3 weeks time and I've been pushing since I was taken to hospital in July!

    I hope you get this sorted soon, I know what it's like to get those looks off the doctor and never being able to sleep, I too wake up at 5.30am for work and I cry knowing I won't sleep until 2am!

  • Its a hard thing to cope with for sure it sounds just like me. I'd never really took much notice as to what endo was but seeing how common it is and how little docs know how to treat it it is worrying. I hope you get some answers from your gyno.

  • Update: My tests to rule out infection have come back and I don't have an infections but I do have Streptococcus B which apparently in very rare cases can cause the symptoms in experiencing although I cant find any information on this rare reaction online. A course of strong antibiotics and an 8 week monitoring plan will tell the docs if strep is the cause or not. If not then I'll be referred to officially investigate Endo. Looks like I'll be waiting until the new year then

  • I really feel for you - I'm in exactly the same boat as you. I'm waiting for an op which is planned for 9 Jan to have everything removed. It certainly sounds like endo but go and see a consultant, have the laparoscopy to confirm - you can take the options from there then. I take naproxen, have taken tramadol together with anadin extra. I also rub ibruprophen gel into my pelvis and womb area for some comfort. Might be worth trying! Take care xx

  • I hope your surgery helps you. Thank you for the advice on the gel too. I'll try that. Take care. Xx

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