Aches and pains

[Linz4686]

Does anyone else ache all over? It’s my back and hips that are really hurting a lot of the time x

[becky1985]

Hi there. Yes I ache all over. Especially lower back and headaches. I recommend buying a long hot water bottle. Works wonders! I got mine for 19 off amazon. Hope this helps you xx

[Linz4686 in reply to becky1985]

Doctors has given me naproxen with all my pain but they starting not to work - any other recommendations?

[becky1985 in reply to Linz4686]

Ah I had naproxen had the same problem got used to it. It’s hard but I tried swimming. Not sure how or why it helped but eased the pain for me. Unfortunately that’s all I do swim and use the hot water bottle. Well until they put me on zoladex. I’m on that now.

[weekari]

Yes. That's my main pain with endo- back and hip pain. It was thought to be arthritis or something joint related but after an xray they saw inflammation and an mri then saw severe endo throughout my pelvis.

Usually I manage it by seeing a chiropractor regularly although I saw her this week and I've been in agony with my back this morning. My periods is due today or tomorrow so I'm not sure if that why it's so bad today.

The pain I have is like an ache that is so difficult to tolerate. If I sit, then stand or lie down for too long or it just builds up, so I'm just having to move all the time, which is hard as my main problem is awful fatigue. I've been told it seems like nerve pain. Codeine takes the edge off enough to let me sleep but it makes me so groggy I wouldn't take it during the day. I find yoga usually helps too.

Do you find anything helps?

[Kerry_M in reply to weekari]

You have literally described me, except I haven’t had an MRI. If I sit for too long it gets so much worse; sometimes I struggle to sleep with it, hard to know how to get comfy. Long car journeys or in the office are the worst. To be honest, I didn’t relate my endo (had a lap last year for it) to any back/hip pain, but I have had an x-ray and was told that was clear, so the doc said probably nerves or inflammation. I asked what/why, but they can’t say. I’m currently having physio for it. But to be honest, yoga is just as effective. I tried Pilates, but that hurt my back more. And I’m having acupuncture - after it was recommended on here. The tiredness is a killer though (and bloating/aching belly which I also have, as well as the back pain).

[weekari in reply to Kerry_M]

Wow, what you describe sounds SO similar! Yup, train and car journeys are terrible for me. I'm best sitting with my legs crossed up on the chair. Not very acceptable on public transport! 😂

I started off all of this by seeing a physio, I thought I'd done something to my hip in yoga but after months, she couldn't understand why it wasn't getting better. It seemed to make it worse. Some of the exercises made me feel sick! I have a lot of weakness in my hips, particularly on my left side. That's how I ended up getting referred to orthopaedics and then getting the mri & endo diagnosis. It was all a shock. I don't have any of the other usual endo symptoms, my periods are totally normal and without issue but apparently hip & back pain is common.

I just started getting acupuncture but just had 1 session so don't know yet if its helped. She also did visceral-pelvic mobilisation which is like a very specific massage/pressing of the abdomen. It's supposed to help. It hurt! She's a physio by trade but does loads of alternative treatments, I'm glad I found her.

Do you notice if your pain changes during your cycle? I only got diagnosed 2 weeks ago so I've just started tracking things.

Are you seeing an endo specialist? I've been messed around so much (I had a lap 2 years ago that ruled out endo) and I've asked to be referred to the endo specialist unit. I can't work and just feel my life is in limbo.

[Kerry_M in reply to weekari]

Hi, gosh you have been through it. The surgeon who performed my lap is apparently well thought of as a leading gynae consultant including for endo, but it’s not a specialist endo Centre. However, it took me a year to fight for my lap and countless doctors telling me it was IBS, stress, all in my head, etc. So grateful to finally have one and find out it wasn’t all in my head!

I have had bad period pain since I was a teenager (I’m now 37) but that wasn’t what made me get a lap. My symptoms were unexplained bloating, really low pain mid cycle, general uncomfortable feeling for a week or two mid cycle, so that my period was almost a relief because it seemed to act as a re-set. And I didn’t get all that every month either, I might go 2 months with nothing.

Not heard of pelvic mobilisation, but before the lap I did see a specialist pelvic physio in Hampshire who explained referred pain to me ie. back pain to abdo pain and vice versa. Pain pathways are throughout the entire pelvic region. It’s not as black and white as doctors want it to be sometimes, so often a combination of things. For me, I’m sure it was endo, stress, hormones, grief (my mum died), and tension from work.

I honestly haven’t tracked my back pain to my endo pain/symptoms. But pain causes us to tense up and use/protect muscles differently, plus inflammation from endo won’t help, and that can be made worse with diet and hormones. Stress impacts on all of the same, the hormones, tension, pain receptors, inflammation. So I think it’s a big combo. X

[Kerry_M in reply to Kerry_M]

This is a really good article about the effects of certain foods. Worth a read. 👍

everydayhealth.com/womens-h...

[Linz4686 in reply to Kerry_M]

I have tried the trying different foods thing, it’s a myth

[weekari in reply to Linz4686]

I'm sorry the diet didn't work for you but I wouldn't agree that it's a myth. Some foods have been shown to have an inflammatory effect on the body (gluten, dairy & meat in particular) and soy had been linked to hormone imbalance.

Also a plant based diet has been shown to reduce inflammation (due to increasing gut microbiome and high fibre content, as well as all the minerals & nutrients).

There is some science and research behind it. It's not going to be the case for everyone though. Plus it is something that needs to be done for quite a while before the benefits can be felt (3 months at least).

[judda in reply to weekari]

Weekari, you have just described my life! I too tried acupuncture and found it very helpful, so keep up with it if you can. I constantly have to cross my legs but recently my hip (left side) has been so bad, so can’t cross them for long anymore! Working was hard for me, it drained the life out of me and I was always in pain! Had an Endo diagnosis through Laparoscopy last week and it has helped to explain so much. Also, reading The Doctor will see you now is like somebody reading a story of my life! I’m on the look out for a physio with experience of women with endometriosis x

[weekari in reply to judda]

Oh I haven't watched the doctor will see you now. Is it a documentary? I'll have to check it out.

I'm hoping so much the alternative treatments will do their work, I do not want to go down the surgery/hormone route.

I hope you get something that helps. Have you tried a chiropractor? I started seeing one because I thought it was my joints but it's helped so much. Is taking painkillers ever day and now it's once or twice a week, sometimes less. She thinks it helps with the adhesions.

It's rubbish you're going through this bit also good to know I'm not the only one!

[judda in reply to weekari]

It’s a book. I found it on audible, so it’ll be on amazon too. It’s a doctor from America who talks in depth about the effects and symptoms of Endo and it was like a light bulb going off in my head listening to it! Did you have to stop working because of your Endo? I left my job for other reasons but it scares me to death to think about returning to work with endometriosis...it’s amazing how anyone copes day to day with it all! I totally believe in alternative therapies if you can find one that works

[weekari in reply to judda]

Yeah I've been off sick since Oct. I went part time at first but couldn't manage that either. It was a really demanding, stressful job with a lot of responsibility so it just wasn't right for me. Thankfully I can get by with my husbands salary for now (I'm having to declare bankruptcy for my debts). It's a tough situation but I generally feel quite optimistic about it all. My life was suffocating me and now I feel I've got some time to feel better. I doubt I'll ever be able to work in a standard 9-5 full time way but I'm hoping to find something I can do for money that can be flexible. I'm really artistic and creative which had been suppressed for so long so I'm hoping once I feel a bit lighter, I can get into that more and see if that can lead to some income.

Have you tried thinking about whether there's something you could do in a freelance way? So you can pick and choose your hours and work from home.

[judda in reply to weekari]

Aw I’m sorry to hear that! It’s hard to explain too isn’t it because it’s so complicated. Plus, a stressful job can make things worse also! Can you not claim disability or anything like that? My aim is to find some way of working from home too, I’m a bit of a creative soul like yourself

[weekari in reply to judda]

That's next in my plan. I'm in the process of my contract being terminated on grounds of ill health so I'll have a few months of salary yet and then I'll see if I'm eligible for benefits until I get something sorted. Lots of unknowns!

I'm hoping I'll be able to create a life that better suits me and not just due to the endo stuff. In a way I feel it's pushed me (quite hard) to make my life more in line with who I am. Maybe it's all for the best!

[judda in reply to weekari]

I believe everything happens for a reason for sure! It’d be good to know about benefits etc, might help a few more people in this forum know they have another option other than working whilst dealing with endometriosis. Good luck with it all x

[Linz4686]

Some days I feel so tired and achy that I feel about 90 and I’m only 33 haha

[weekari in reply to Linz4686]

Me too. When I stand up I feel like I'm one of those old ladies who walk bent over! And I don't think I can sit down or stand up without groaning! 😂

[judda in reply to Linz4686]

Same! (Except I’m 35) lol

[princessk09]

I ache all the time but it’s a mixture of playing sport, going gym and suspected endo. My physio is amazing and after each session I feel like new haha xx