Night Time Pains !!

[B3CCY]

Hello everyone,

I was wondering if anyone else experiences severe pains at nighttime due to Endo? I take strong pain killers, cramp medications and antispasmodics. I use a hot water bottle and have invested in a electronic heat pad. Nothing seams to work, i usually end up crying myself to sleep.

I was diagnosed with Endo following 2 ultrasounds and an MRI scan following 2 C-sections. I an under a consultant with plans to have a radical hysterectomy following the COVID outbreak.

Thanks and stay safe

[Moon_maiden]

The pain can get very frustrating at times. I resort to morphine now and again at night, usually after I’ve maxed out on other painkillers. Plus two wheat bags, which are currently being reheated all day.

Hope you manage to get some control and not too long before op.

[B3CCY in reply to Moon_maiden]

Thank you so much, i have never heard of wheat bags i will look into this.

[Lydia2020 in reply to B3CCY]

If these are the reusable ones you microwave, they're amazing (currently have one on my lower abdomen as I type).

[Pureunicorn]

Hi I suffer badly at night too, just trying to get comfortable then just as u do the pain comes and u have to move again 😭 I sometimes find it better to sleep upright like on the sofa dosed ip on pain relief and a hot wheat pack or if u can try propping yourself up in bed so ur not laying flat this might help, what pain relief are u taking? Might be worth speaking to ur gp about trying something different, hope this is of some help xx

[B3CCY in reply to Pureunicorn]

I will try to sleep upright to see if it helps x thanks for the tip x

[Milly2408]

I have the same, the pain seems to always be worse at night. Sometimes I will be in tears until I finally fall asleep from exhaustion. It's a truly awful condition!

[B3CCY in reply to Milly2408]

It really and is is very underpublicised possibly due to being a female only condition. It can feel very frustrating and especially knowing how long it takes people to get diagnosed. I was very lucky with my diagnosis and had it within a few months due to the severity.

[Court_88]

Sorry to hear you’re struggling with the pain - it’s crazy what we all go through on here I’ve found that hypnotherapy videos for pain (you can find them on YouTube) were really helpful for nighttime and with all the painkillers combined, managed to make things a bit easier and set me off to sleep. Worth a try, hope it helps xx

[B3CCY in reply to Court_88]

Thank you so much it is something I will look into. I do try to meditate before bed but that is pain depending also x

[Whoisthis]

Wheat bags are great, I’m always found covered ina wheat bag at the front, then hot water bottle in my back, I lie on my left side and put a pillow between my knees and one behind my back, this kind of props all the heat agains let me and I feel cocooned in! No idea the logic behind it but I find this really helps me settle to sleep, maybe at 1-2am but I do finally get to sleep this way.

I hate saying this but it is good to know I’m not alone, and I’ve actually managed to scar my belly with heat, so be careful of those burns .. they will fade but the last thing we all need is more issues!

[B3CCY in reply to Whoisthis]

I totally understand in a wierd way it's nice to know I'm not the only one too x like not on our own x

[Hannah_w1990]

Recently I have been having the most intense pelvic cramps at night that take my breath away. I recently saw a neurologist for my endometriosis and he gave me cortisone injections in the subcutaneous abdominal nerve to help with my pain. And it was supposed to be followed up with physio but unfortunately coronavirus has ruined that plan. So now I think the muscular pain is worsened by the whole experience. I missed my period as I also suffer with pcos so I'm probably not going to get it now. I have been gently stretching and using ibuprofen and a hot water bottle.

The neurologist did say the abolute worst thing you can do with pelvic pain and abdominal pain is curl your knees up to your chest. It puts too much pressure on the muscles and nerves which are already inflamed , even though its usually your instinct to comfort yourself. Try sleeping on your side with a proper pillow not too soft, and a knee pillow to support your hips and pelvis

It's the worst my endo has ever been in my life but I take it one day at a time until I can start my physiotherapy

[B3CCY in reply to Hannah_w1990]

Thank you so much for your comment. I didn't know they referred to Nero for endo. I also feel like my pain becomes worse every time.

[Hannah_w1990 in reply to B3CCY]

My gyno explained that the pain with endo is in the muscle and the nerves. It's not your uterus and ovaries, but actually the pelvic floor and the nerves. Which is why some women can get a full hysterectomy and still get pains every month, because the nerves are still reacting because they remember. And your whole body is highly sensitised because endometriosis is an inflammatory condition.

The neruo did say that the worst thing you can do when you have pains is curl your knees into you. So while I'm not able to see the physio I have found some daily yoga stretches for the pelvic floor and have found these helpful, as well as mindfully tensing and relaxing the pelvic floor (like a kegel) so when I get the intense pain I remember to relax... Its helped a lot in the few days since my comment

[Whoisthis]

That’s really helpful, they do say pelvic physio after any operation is good to look at, for that reason.

It’s visceral pain we suffer with there is so much online about it if you wanted to read up. 😬

Hope everyone is ok today,?