Can't sleep on right side now - any one else have this?
I have moderate endo. I currently can only sleep on my back, legs crossed or in "frogs legs" position, or on my left side in fetal position. If I sleep like that on my right, I start twitching. There feels like something heavy in.my back right side that doesn't like pressure on it. It's worse when I sit at my desk.all day, so am increasingly convinced it's posture + endo. I had all bloods tested a month or so back and that's normal. I have a Mirena coil which is really doing a good job too. Anybody else have this?
I’m sorry you’re having trouble finding a position to sleep in that’s comfortable. This is definitely something I’ve struggled with, including it being on the right side. I don’t have a visible mass in that area — at least not according to my last surgery in 2021. But I do get recurrent scar tissue on my right side, and I have a diagnosis of periformis syndrome on the right side that pinches a nerve. (Is there endo deep DEEP in my muscle tissue? I wonder, but regular ultrasounds and MRIs don’t show anything. And my doctor said he wasn’t going to go “digging around for endo” if he didn’t see evidence from the outside during surgery because that can cause it’s one set of damage/problems.)
With that said, I’ve had 3 surgeries to remove endometriosis and scar tissue. Removal of the scar tissue on the right side did help some with my inability to sleep on my right side/sit for long periods. But I have some structural issues that contribute to the problem ( I only found this out recently), and what’s helped the most has been pelvic floor therapy, especially the PT person I saw who treats people with spinal issues and the PT person who works with women and sports injuries.
I also got a new mattress, which helps. Here’s an article I wrote about that, in case it’s helpful: https://endometriosis.net/living/mattress-back-hip-pain
If you’re having trouble sitting or standing for long periods, definitely bring that up with your doctor and ask if you can work with a pelvic floor specialist who works with people who have a uterus and hip/spine issues. If they have experience treating people with endo, even better! - Keri (advocate)
I absolutely cannot see anybody who can help on the pelvic floor front - I have suspected it's pelvic floor dysfunction for ages, but the doctor doesn't know of a single person who specialises in overly tight pelvic floors (only for post pregnancy weak pelvic floors - the usual "if it's not maternity related, you're under the radar" sitch). I went to see a private specialist (nearest one, hours away of course) but she couldn't find anything wrong, nothing has showed up particularly in scans, just told me to do the exercises I was already doing, but I think it's a system of things that are overstrained. My stomach muscles are all part of it - I literally couldn't orgasm due to them being overworked and I pointed this out to my doctor and it was still apparently not worth trying to help with. I do actually see a sports physio every single week, have done for a couple of years, just to keep things from getting too tense in the rest of me. I don't have trouble standing, it's sitting that's causing muscle issues. Nothing wrong structurally. I am usually somebody who keeps very fit, but I think it was my insistence on running 30-40k a week not long after the op that made my pelvic floor even more tight. I was running and bleeding after every run and having to go for a wee in bushes before I got my op, so it's better since, and I am switching to cycling and swimming and only teeny runs and have had to give up weights and pilates until very recently because it makes my stomach muscles bad for days. I used to get extreme muscular twitches from all the ligaments and everything round there, but since I have been trying to rest up, it seems to be helping. I have a standing desk now so spend as much time as I can standing and if I do that definitely before bed, it has helped. Can definitely orgasm again now, so I know I have fixed some of the tightness there (thanks for the support NHS, it's lucky I can work things out all on my own). I feel like I might be able to undo all this myself, but I am finding it super frustrating that the NHS won't investigate any of this for me. I had to go to A&E the spasms were so bad when they first happened that I couldn't sleep at all as it jerked me awake constantly, but again, apparently not an issue - despite the fact I'm self-employed and can't go off sick so not sleeping is definitely a problem. I do have a private gynaecologist and he has been great but I think the muscular therapy side of it is a bit new to him, he usually deals with worse surgical cases than me, and I think mine is all muscle related. Tbf, just as I was developing endo, I went on a bit of an ultra bike ride for half a day and messed up a tendon in my foot which meant I couldn't walk for 1.5 years (could have been fixed in 6 months if 3 NHS doctors had taken more than 5 minutes to look at it, had to go private in the end when none of their suggested exercises were working and it turned out I had been doing a year of the wrong exercises), so I think sitting down almost permanently during that period has possibly been the culprit, and the endo is just making it more twitchy. I find amitriptyline 10mg or 20mg before bed on worse days is good, but this whole right side thing is sometimes worrying me in the depths of the night because I can only sleep in 2 positions mostly. I get into bed and get that ah, cosy bed feeling for all of a minute, then the discomfort kicks in and my bladder and bowels insist they can only survive by being completely empty if I am going to insist on lying down... Sorry, long rant, but I'm trying to find new avenues by talking and comparing on here with full details as I can't get any doctors to actually care about this, and I usually get best results fixing it myself (you name it, depression, knee injury, foot injury, RSI hands where I couldn't even hold paper once, navigating an underactive thyroid that almost resulted in a coma and only got picked up by my dentist because he thought I had leukaemia, not the NHS doctors I went to about not feeling well - are you getting the picture about why I need to try and work out what this is by myself hahahaha).
Hi! Sorry to hear you struggle with this too. I also can't lay on my right side for more than a few minutes without feeling an intense dragging pain and pressure on my left side. I wonder/imagine it's from endo around my bowels and in the left abdominal wall, which I recently had removed. Thus maybe laying on my right is pulling all that tissue down causing pain? I haven't found any solutions other than to sleep on my left in fetal position too often hugging my heating pad or placing it under my left hip. It's interesting your pain seems to be from applying pressure when you lay on it and mine seems to be from laying on the opposite side and creating a pulling sensation. Wish I had answers for you but wanted to let you know you're definitely not alone!
just wanted to say thank you for being here and sharing your experience with us and our community member <3 I am sorry you experience something like this too. I actually can understand what you are talking about. I get that pulling sensation when I lay on my side as well. I want to say it is definitely from adhesions. I honestly don't even know or have answers either, but wanted to just tell you I so relate! <3 -Kimberli (advocate) that is great that you have one of those standing desks and that you are doing pelvic floor relaxation exercises. I think that will definitely be helpful. I notice when I sit for longer periods of time, I get those pains that both you and Pamela are talking about. I always feel so much better when I am standing or even walking lightly or stretching. I had some endo on my abdominal wall as well and had it removed this last surgery I had 3 weeks ago. He only found it through surgery. Honestly, I had no idea it would even be there he just so happened to see it while he was doing something else. So I think I got lucky. If you suspect maybe you have it there, I would definitely bring it up with your doctor. Please keep us posted on you and how everything is going! Sending you hugs. Hope you find relief and answers soon. -Kimberli (advocate)
