Wondering if anyone can advise what may be causing this/how to ease when it happens..
I have spent the past 3 hours in the bathroom with intense and severe abdominal pain, intense lower back pain, over heating, feeling like I'm going to pass out, then resulting in of course diarrhoea, after sitting on the loo for 30mins struggling to have a bowel movement. I was reduced to absolute tears while in the bathroom my anxiety went sky high thinking what on earth causes this 😭 I struggle to breathe sometimes when this happens too, I find I have to practice really controlled breathing in order to not panic. The pain gets so intense I'm doubled over. Today I got so overheated I had to take a cold shower half way through being on the loo, I had already taken my shorts and t shirt off by this point to try and cool down (sorry TMI I know!). 2 hrs later I'm now out of the bathroom and I'm now led in bed with an ice pack on my stomach.
I really dont know what causes this or how to ease it? The first time it happened i thought i had a stomach bug so phoned in sick, then the next morning I woke up bleeding, so figured it was the endo. It has now happened 3 more times, second time no bleed after, third time a bleed 2 days later. I only finished a bleed last week, which was a mix of spotting with a day of medium flow. I didnt have periods for 4-5 years as my BC stopped them, but a year ago they suddenly appeared again, following a smear test.. (coincidence I'm not really sure!)
Help!! 😭💛
Ps I had a lap in 2014 where they didnt remove anything and didnt give me a solid diagnosis, "presumptive extensive endometriosis/salpingosis POD".
I am on the waiting list for excision surgery with a nook surgeon once the pandemic is over!
Thank you in advance x
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Blb21
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I was just about to write how I feel today . I feel warm dizzy hot went a bit cold ? Feel full of wind ache all over stomach pain boob ache it’s horrendous to top it off feel like passing out even when laid down!!! Feeling like my breathing is weird absolutely feel so ill What is this!! I’m 23 days so only really 5 days away from period . Il ring docs Monday could be a water infection but so due on about to explode literally . Oh and insomnia like crazy
Oh no! Sorry to hear you're feeling the same 😔 that's exactly how I was feeling I felt like I was so hot I was going to overheat but my boyfriend felt my forehead and said I didnt feel hot at all! Sooo confused haha. Oh yeah, I had the boob ache/chest pains the day before this! Yes I went to lay down in bed but felt worse too! I always feel totally full and loads of pressure on my stomach, then a day or two later I will bleed and I'll be sat there thinking well that explains it all! I dont have any form of cycle I can go months with nothing then have 2 periods in a month. My stomach was really tender when I woke up this morning. I've had breakfast (cornflakes and a cuppa!) and now am stuck in the bathroom again with a bad stomach ache. Really struggling to know what to eat now without needing to rush to the bathroom! Tried the low fodmap diet for almost 6 months seemed to help but then suddenly stopped helping... Really hope you feel better soon and get some answers!
I had similar experiences and it was the endometriosis that was attached to the bowel and my ovary and womb were also attached the the bowel by adhesions so strong they’d pulled the bowel up.
If you were diagnosed in 2014 it will have progressed.
It is absolutely awful and you cannot be expected to deal with that kind of pain.
I would ring your GP as they will have a copy of your diagnosis and should prescribe you some strong pain relief and also discuss everything that has happened as I believe you need to get it checked out asap. I know it’s hard with covid.
Thank you so much for your response, that sounds so possible that that may be what is causing it. The drs I've seen 5 times and 3 different GP's in the past 8 months to get different opinions. Most said oh its IBS. My usual GP got me referred to an excision specialist who I'm now on the waiting list for.
Did you have anything that helped ease it when you had these symptoms? My GP mentioned naproxen but as it's so sporadic and comes out of nowhere I'm not sure it would help. I try to have lemon and ginger tea whenever I can to prevent this and also have it afterwards to help with the inflammation, just have no idea how to ease it or try to prevent it.
We thought it was food aggravating me, as for the past year I've had a mild stomach ache literally every day, but if I even eat things like lettuce or something stupidly simple I'll get stomach pains. Every time I eat I get pain.
I will 100% contact my surgeon to see what else I can do in the meantime. I always feel like such a pest keep contacting people asking for help 😣 especially now with covid my brain is even more frazzled!
I currently take codeine and pregabalin and have tramadol too.
Its a nightmare as I’ve had 4 operations and it comes back worse after each excision now I have pain everyday and been signed off work since December (although the bowel isn’t quite as bad now i barely have periods).
Hopefully the GP will give you some fast acting pain relief to have with you at all times for when it comes on. Don’t be fobbed off with that mefanamic acid, if anything it made my pain worse and does absolutely nothing for our stage of endometriosis pain.
Unfortunately those medications come with their own side effects so have to take senna every night.
It’s so random - I could be going for a walk or in shower for example just with twinges then with no real warning I’d be in absolute agony and unable to move and even breathing hurts. And also the hot sweats too and sometimes made me sick.
I don’t think people understand just how disabling the pain is.
I’ve found that weird lot eating fruit makes me worse and anything with gluten in. Although I haven’t cut gluten out altogether I don’t eat bread anymore. I feel it bloats me and the bloating causes pressure on problem areas.
I feel same and always have about being a nuisance but I spoke to my GP last week and think she was actually glad of some work to do as she said they currently have more staff than patients to deal with.
Hope you aren’t waiting too long for the excision.
Thank you so much again! That sounds so similar, every time it's happened I've been absolutely fine one minute and then the next it's like my body is about to explode! My boyfriend really doesn't know what to do either I feel so sorry for him as he just doesn't understand that nothing makes the pain go away he keeps asking what he can do to help 😔 Feeling much better now. I've cut out gluten, lactose, onions and garlic as much as I can since October, it seemed to help reduce a little but still very sensitive to any kind of food. I will definitely call today, fingers crossed! Thank you x
I feel the same about going back all the time, unless you do though they won’t know. I do think that unless people go back they won’t consider things are an issue so much. It makes you feel awful though. Ignore COVID circumstances, if you haven’t got symptoms it makes no odds. It’s so much quieter going in at the moment.
They had no qualms about giving another bottle of morphine (trying not to take everyday at moment) or other painkillers. I’m trying the naproxen instead of ibuprofen again. I believe you have to take it everyday for it to work properly, or a few days before you know you might get pain.
Amazing, thank you sooo much for letting me know! I did have a missed call from my surgeon just checking I was ok and to let me know I am on the excision list although they can't say when of course, I will definitely change my mindset and phone back today! I honestly felt so bad about calling at this time, but you're right!! thank you
Sorry to hear about your experiences. I too have experienced this and it turned out to be Vasovagal Syncope trigger by period pain. It would usually happen on day 1 of my period. I have since had a laparoscopy and they found endometriosis on my ureter, however I think the main way for me to prevent this reaction is to take painkillers as soon as I start my period (even before the pain starts) as a preventative measure, because once the pain started, it was too late to prevent this reaction.
The pill has also been a preventative measure for me. I wasn't sure from your post if you're still taking the pill but in case you wanted more information on different hormonal options I have provided a link below to some information sheets on hormonal treatments and pain relief:
Hello, thank you so much for replying! I just googled and searched in the facebook group I'm in about the vasovagal syncope and does sound fairly similar! I will definitely look into this. Coincidentally I had pelvic pains yesterday and the day before and thought yup I'm about to bleed, and yesterday there was a bit, so I think it is definitely related to cycle, whatever cycle that may be as I only bled around 2 weeks ago!
Yes I take cerazette desogestrol pill and have taken it for I dont even know how many years now! I didnt have periods for years, and the november 2018 I had my first smear test done, I bled a week after a little, and then since the january I have had (very irregular) bleeds ever since. Sometimes I can go months with nothing, and then I will have 2 bleeds in a month for example. It's very unpredictable. I need to ask my surgeon, as GPs don't even pay attention to this when I mention it..
My gut is mess up anyway. But I have about two how's of screaming (I have an extremely high pain tolerance) and squirming on the floor, really hot and throwing up, I actually had a really low temperature. I often spend at least 6 hours unable to get out of bed to a few days were sitting up for more than a tiny bit is a bad idea. I normally have up to three weeks of symptoms before period (increasing as it get closer) a week after where I'm wiped for recovery and then a week where I'm okayish.
I get this all the time its horrendous, it took me years to get a proper diagnosis but its definitely endometriosis, mine comes at different times of the month usually close to when you have a period and ovulation, the pain is so severe you are doubled over and usually end up on the toilet / being sick with the pain. I've noticed exercise tends to bring it on too. I've read a gluten free diet can improve endo pain which im considering trying and/or mirena coil which I really didn't want to try but I may be left with no choice as the pains are getting so bad. I found the depo injection totally stops all endo pain its like a miracle worker but I took it for that long I now have osteopenia so have to now take vitamin d to try and repair my bone thinning.
I am struggling with the same symptoms and have been to the doctors several times but keep getting fobbed off and say it’s either a stomach bug or ibs. My mum had endo when she was my age and it’s making me think I have the same.
It’s a long shot as I can see you posted 3 years ago but I was wondering how you got on? Did your symptoms turn out to be endo? Or what treatment did you need to feel better?
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