Waking up with sickness : I constantly feel... - Endometriosis UK

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Waking up with sickness

Greeen1 profile image

I constantly feel nauseous during a flare up but I’m waking up feeling completely sick to the point that I almost am (it hurts) and need to sit/lie down. It’s awful and is making me so upset! Any advice? I’ve been prescribed cyclazine.

38 Replies

Hey! Ive had the exact same, mine was really bad one week. I couldnt eat at all i dropped a few pounds- ending up that i had a cyst but my docs couldn't explain the nausea and gave me the sane drugs. I still get it every now and then and its a nightmare

Greeen1 profile image
Greeen1 in reply to Coco136

Sorry to hear you’ve had the same - it’s crazy how debilitating it is and I just feel useless. How was your cyst spotted and where was it if you don’t mind me asking. Did anything help the nausea? x

Coco136 profile image
Coco136 in reply to Greeen1

Hi, my cyst was spotted on an MRI months previous and then it ruptured and the agonising pain that followed put me in hospital for three days. Trust me i get it i feel horrible and so helpless. Honestly the cyclazine really really helped but i spent about 2/3 weeks eating very little and building it up day by day. Soup and crackers were my best friend x

Greeen1 profile image
Greeen1 in reply to Coco136

Oh I’m so sorry - that sounds awful! Yeah the cyclizine takes the edge off but I’m unable to do anything.. Crackers are a saviour! Hugs x

Hello

Yes I struggle with this too. I can pinpoint my cycle based on how nauseous I feel. I’ve found just having foods easy to digest or really bland helpful and when I’m feeling really nauseated I’ll have a small glass of lucozade that helps bring my sugar level back up. Ovulation and the days before my cycle the worst. Also I take buscopan for my IBS flares but have found it helps when my period comes around too.

Hope you feel better soon. Hugs x

Greeen1 profile image
Greeen1 in reply to Lunaloves

Thank you for sharing your experience too! I think Lucozade is a good shout. How long does your nausea usually last? I can be wiped out for a week.. Sending hugs too x

Greeen1 profile image
Greeen1 in reply to Greeen1

Also hadn’t considered buscopan x

Lunaloves profile image
Lunaloves in reply to Greeen1

The nausea can last a few hours to days at a time. I feel almost like I have vertigo with it if that makes sense. Lucozade has been a life saver at times. When I spoke to my gynae about the buscopan he said it was because it stops the spasms. As I’m all ‘stuck’ together, once my tummy is upset then I get period cramps and vice versa. X

Greeen1 profile image
Greeen1 in reply to Lunaloves

Thank you - sounds horrible! What treatment have you had? x

Lunaloves profile image
Lunaloves in reply to Greeen1

I had a laparoscopy two weeks ago that removed some fibroids (one was 10cm in size) and endo removed … well what they could anyways. I think the surgeons words were “we should have done this a year ago”. I currently have the merina coil in which was torturous for the first few months but has helped . I’ve had it a year now and would say I’m only starting to see the benefits of it. I’ve tried different pills etc. Waiting for following up appointment to find out what’s next. How about you?

Greeen1 profile image
Greeen1 in reply to Lunaloves

I’m so sorry - it’s so awful isn’t it! I’m on my second referral as my first has gone over or something due to Covid/time. I’ve tried numerous pills, had the mirena fitted in June (worst thing ever) and two days ago, Dr suggested I start taking my pill again with the coil.. just lost really. I hope your laparoscopy went well and the follow up is good! Hugs x

Lunaloves profile image
Lunaloves in reply to Greeen1

I was told to keep my implant in as well as the coil. I did find it increased my migraines tenfold so had the implant taken out. My gynae wanted to put me on more tablets but I refused until I had the lap to confirm. Fed up of just been given pills to ‘solve problems’. I hope your referral goes through quickly and you aren’t waiting too long.

I had exactly the same but I found it was the pain making me feel sick. So I have these intense spasms up and down my stomach and I'd have to be sick repeatedly until it calmed down. Unfortunately I found nothing helped but at the time I didn't know what I was dealing with. I was suspecting endo but only had it confirmed on Saturday following a laparoscopy. So for the most part I was getting treated for IBS with my GPs. Part of the issue, it turns out my intestine was stuck to the lining of my abdomen wall. The consultant also told me that the chemicals endo releases makes you feel that sick. Do you have a gyno you can reach out to or get referred to? I can't sympathise enough. It's the worst feeling in the world. It's like having food poisoning from absolutely nothing isn't it?

Lunaloves profile image
Lunaloves in reply to LouiseC83

Hope you are feeling okay post lap. I had mine two weeks ago. I hope it provides you some relief. After being through gastro for my stomach - mine to turned out to be bowel endo and was the cause of my tummy upsets/sickness/pain. Hoping to see some relief in the next few month (currently it’s still hit and miss). I hope it works for you 😀

LouiseC83 profile image
LouiseC83 in reply to Lunaloves

Oh really? Like you still get flare ups? Did you have ablasion or excision repair? Oh gosh see that's my biggest worry that I'll still get these debilitating flare ups

Lunaloves profile image
Lunaloves in reply to LouiseC83

Excision I think. I was really poorly post surgery so only for the highlights from the nurse on discharge. Waiting for my follow up phone call. I was told it can take upto 6 months to see the difference so I’m trying to remain optimistic - I’m with you there, I’ll be gutted if I still feel as rotten as I did pre surgery. Although I do think my belly button incision has an infection. Started to feel a little off this afternoon and my wound was leaking. Will see the dr tomorrow. X

LouiseC83 profile image
LouiseC83 in reply to Lunaloves

Oh bless you yeh get checked out definitely. Best to be sure.

Oh good god - 6 months, seriously? That's terrifying

Greeen1 profile image
Greeen1 in reply to LouiseC83

I’m so sorry - sounds awful and very painful. I hope the lapro went well and it’s able to offer some relief. I have been referred NHS gynae but not sure when I will hear so I’ve booked in to see a specialist privately - I can’t keep going on like this (appointment in 2 weeks). How did you referral and everything work? X

LouiseC83 profile image
LouiseC83 in reply to Greeen1

My referral was really easy but I was lucky enough to have private medical care through work so the process was quicker. I've never had to use it before all of this happened. My consultant was incredibly good. Felt very at ease with him. Supposed to be one of the best in the country in this field. Where in the country are you? My GP actually referred me to gastro first. So I've been through tons of tests already. It was the gastro who referred me onto a gyno because I asked to be referred to a gyno as well. A couple of people (also endo sufferers) had mentioned endo to me as a possibility otherwise I would never have probably reached an answer to be honest. The main thing I'm very aware of since the surgery, in spite of healing pains being present and being quite emosh 😂 (these will go in the next couple of weeks), I definitely no longer have that constant tightness and pressure on my upper abdomen. So something good has definitely happened. Just need time to see exactly what

Greeen1 profile image
Greeen1 in reply to LouiseC83

Ah I am really pleased for you - sounds great that you are in safe hands. I am in Nottingham. Was your surgery last Saturday then? I hope you make a speedy recovery and it’s great you’re already feeling some benefits. Can I ask what else happened during the process? Is endo only visible during the laparoscopy?

LouiseC83 profile image
LouiseC83 in reply to Greeen1

I'm not entirely sure to be honest. I've had an ultrasound and an MRI which it didn't show up on. But it wasn't specific to searching for endometriosis at the time. I'm in Manchester and yes it was on Saturday this week so all very very new still. I was so convinced they wouldn't find anything that when the doc told me after the surgery I cried. It went on for a while like that. I'm still mega emotional tbh. Today I cried at a daddy long legs in our house because one of its legs were missing 🤣🤣🤣What do you want to know about the process Hun?

Greeen1 profile image
Greeen1 in reply to LouiseC83

Ah bless you! 😂 Defo with you on all the emotions though - uncontrollable! I guess just what happened/the order of things/timings please. Did they say where your endo was? I bet it was such a relief to have an answer and hopefully you’ll be feeling much better soon! X

LouiseC83 profile image
LouiseC83 in reply to Greeen1

Unfortunately I still don't have the full story yet. I know for sure my left ovary and my upper intestine but I'm waiting on my follow up

It was quite straightforward. In on the weds for pre assessment, show up for the procedure, seen by nurses for initial obs before going in then the consultant came, then I watched Netflix for a while, the nurse came to get me and I went in. Completely sparko the whole procedure. I stayed in recovery for about 45 minutes. Unfortunately I wasn't well enough to go home that day. I had to stay a couple of nights as I was in a bit of pain. Most people do go home the same day though. And I'm now at home trying to recover and trying not to cry about stupid things. Just have to take it mega easy after. I've been signed off for two weeks but I've been told I need to take each day slowly

Immy1992 profile image
Immy1992 in reply to LouiseC83

Yes I've started feeling sick all the time too especially after eating it's weird I've just called my GP for a call back today about it whether they'll diagnose such a strange random thing I'm constantly tired and sleeping and loosing motivation rn. I've had endo excision before 3 years ago but I reckon it's back again. I have gyno appointment in 3 weeks as well 😩

Greeen1 profile image
Greeen1 in reply to Immy1992

It’s so weird and hard to describe - I just feel nauseous and retch constantly. Glad you’ve got a call back. Cyclizine is helping me currently and just patience - finally lifting after a week of hell. Hope you get sorted x

Hi I feel sick all the time currently. Even during the night. I sometimes have dreams where I am sick and I wake up with pain as though I’ve been sick. 🤦‍♀️Dried corn cakes and water for me but i still get hungry. Ginger can help some but it no longer works for me.

Greeen1 profile image
Greeen1 in reply to Bethleah

I’m so sorry you are going through that. Yes through the night too if I’m awake which is often due to insomnia. I really don’t know what the answer is. Cyclizine does take the edge off so would definitely get some prescribed. Hugs x

Bethleah profile image
Bethleah in reply to Greeen1

Thx

I don’t have any advice but I am so sorry you feel like this.

Greeen1 profile image
Greeen1 in reply to mollitiam

Thank you! Hope you are well x

Hi, I have exactly the same. But I’m really finding it hard to eat and I’ve been like this for 3 months now and I’ve lost 2 and half stone. It’s really getting too me. Please keep me updated if you find anything that helps x

Greeen1 profile image
Greeen1 in reply to Kcp289

Gosh, that is so long! Mine usually lasts about a week and is so debilitating - I can barely eat and also losing weight. Have you tried cyclizine? It helps a little x

I can totally relate. About 4-5/7 mornings I wake up hangoverish, I feel sick and sometimes my head hurts too. To this date I thought it was because of my fibromyalgia but now that I suspect I might have endo, all these symptoms make much more sense. I also feel that there's no correlation on what I've eaten the previous day and this can happen even if I feel I've had a good night sleep. Doctors don't consider this an issue although it's crippling 😪

Greeen1 profile image
Greeen1 in reply to KeljuK

Keep pushing - it’s one of the worst feelings!

Aw I really empathise with you. What a terrible feeling. I was given cyclizine too, and alot of the time I ended up vomitting with the pain anyway. I found my tummy was just not coping with all the pain meds so my Dr prescribed me a voltarol suppository. I was horrified to begin with but it was the only thing that got me back to sleep on nights when the pain was crazy. Just a suggestion! X

Greeen1 profile image
Greeen1 in reply to Petitechili

Thank you! Was it the pain making you sick? This is more just constant nausea and sickness - I can barely eat x

Hi I used to end up in the ER because of my constant vomitting, what helped was an excession surgery because the endo was hitting certain nerves that were affecting my stomach and digestive system. Its been two years now since surgery and Ive stopped feeling nauseous.

Greeen1 profile image
Greeen1 in reply to Samaher87

Hi, thank you! Did you get any relief sooner than 2 years? Did anything else help?

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