Aching body endometriosis

[Lilly2010]

Hi not sure if anyone else ever has these issues but every now and then I wake up with such bad aching muscles in my body a point it feels like I've done 24 hours in the gym none stop from my muscles in my legs,stomach,even my by bum hurts me literally every muscle I've not done no work outs or over done it or anything,it tends to happen every other week or so to a point I can't do much because I'm so achey would this be due to my endometriosis or is something I should discuss with my doctor it's the only thing I can possibly think it could be from its one thing after another lately thanks girls xx

[Vps1980]

I feel like this everyday especially first thing in the morning xx

[Lilly2010 in reply to Vps1980]

So I'm definitely not on my own feeling like this then it's been such a horrible day for me had a bad flare up,woke up with horrendous back pain and all day my body just hurts from head to toe 😔xx

[Vps1980 in reply to Lilly2010]

Have you tried Epsom salt baths xx

[Sam198]

I have this issue aswell. I find it so hard. Like how much is endo and how much is or possibly could be sonething else🤦🏻‍♀️ Good luck🌹🌹

[Endo_Jaded]

Hey Lilly2010, have you considered Fibromyalgia?

I have Severe Endometriosis with DIE, PCOS, Endometrioma’s, Fibroids and adhesions from no abdominal surgery.. but like many of us Endometriosis warriors I also have fibromyalgia and it definitely presents differently but similarly in each of us.

What you are describing, at least to me is exactly how I feel except mine may be twice or so. The aches are so bad at times my daughter knows now to get straight in and get clothes for me that are “pain” clothes. (I live in theses sadly due to incompetent doctors and a four year wait for an urgent surgery, my stories here somewhere)

For pain days I use non wired bras, more comfy underwear, loose up a size pjs or long night dress. If I have to struggle through the pain to go somewhere I use a oversized T-shirt from Boo (hoo) and maternity leggings. I swear by maternity leggings or jeans for those bloated swollen days. Or jeans by Lee called dream jeans, you used to be able to order them in via Amazon Com site to UK from America but sadly covid has paused this now.

I’d discuss this with GP or look up the fibromyalgia check point symptoms and mark off the ones you relate too and then proceed.

Endometriosis is an annoying disease because it does present so awfully in some women, myself included. My Endo flares and it sets of my Fibromyalgia which in turn triggers a reaction from my Hashimotos.

But from my Endo, my pain is left sided mainly and impacts from the shoulders to the toe. Of course it’s contained around the left ovary area and pelvis for the severity of pain or in my lower back. Pain can be felt in my thigh, straight into my shin and foot. This can be linked to my endometrioma, and the fact M Fallopian tube is three times the size filled with blood. (Yes the still don’t care here in NI and I’m still waiting as an Urgent case).

Depending on your severity of Endo and not necessarily on how much Endo either pain can manifest in many ways too. I recommend downloading and app called my pain diary 2, it’s a basic app but it can be fully customisable from colour coding, too different illnesses, symptoms and so forth.. I’ve used it for three years now and built up a history of pain for the doctors. You have to download the charts regularly though. I tend to email them to myself quarterly, just to keep the info safe.

But 100% watch every symptom and record specific things. For me I was having horrid digestive issues at ovulation and my period that I was running to the bathroom both ways and ill for three days this way and on top of being bed bound with pain. It turned out endometriosis had triggered a lactose intolerance and as soon as i cut out lactose in milk I felt better. I can still enjoy cheese as it’s processed differently, and UHT cream and small doses of double cream (but too much triggers it) but I drink lactofree milk rare occasions now, and live on herbal teas or Earl grey.

I also can’t eat dried pasta or noodles and small doses of egg pasta. Or anything is ‘bad oil’ so rapeseed/canola or vegetable oils these are all really bad anyway but thankfully I use coconut oil or true Greek olive oil.

So it can definitely trigger other things, this is why I recommend monitoring everything and it does take time.

Also read beyond the pill or books on women diet and hormones.

I truly hope I haven’t bombarded you with information, I just feel us women have a raw end of the deal especially lately and we do seem to be forgotten a lot. We should all help are fellow female especially through all this as much as we can. Women are the backbone of society and we definitely should be treated as such but sadly this isn’t always the case.

Good luck

Endowarrior 🙂

[SLIB in reply to Endo_Jaded]

I was really interested in what you wrote about food triggers. When I was first diagnosed 20 years ago I went lactose and gluten free for 10 years and although quite hard to maintain it really helped me. My Endo is back now after a lull, and am finding same approach is helping again

[Endo_Jaded in reply to SLIB]

I was so against it being diet because I do eat healthily and as natural as possible, I don’t drink or smoke and don’t drink carbonated drinks. I drink herbal and water, eat pretty well or so I thought. It turns out that a lot of the vegetarian/vegan options I was eating where laden with carbs or chemicals/fillers that didn’t agree with me. And cheap options always go toward pasta 🙄. I can’t touch this if it’s durum wheat or dried noodle of any kind. I actually had to return to eating fish and meat to get healthy again. So I’m no focusing on a *dirty paleo approach and monitoring but after Christmas I’ll be doing a complete cut for 30 days and then reintroducing a new food every 4 days. It will be long and arduous again but it’s the only help I can give myself.

Sadly, women are at a point that we are being overlooked, silenced and told to stop again.. my great gran fought for my right but I’m pushed now as much as they were then. Endo affected my entire five generations and I’m the first to have a solid diagnosis’ but we’ve all had to have hysterectomies before 40 sadly.. and still no further forward on why or how it truly happens and how to stop it…. Vaccine in a year for covid and nothing for Endo in 60 years really other than chemicals.

Definitely get a copy or audio book of beyond the pill it’s really good. Xx

[Nia-Walling]

Yes I do too, particularly in the pre menstrual phase and I think is worse in winter too. Hope you feel better soon

[Bespp in reply to Nia-Walling]

Agreed, winter is a killer for me too.

[Escapologygirl]

Oh thank you I thought i was the only one and imagining it

[Ronsk]

Hi,

I've been waking up for over the last year several times through the night with extreme pain in my back around my lower rib area down to my lower back and both hips/thighs. It gos away after about 30 minutes of getting out of bed and I'm fine however do have sciatica that bothers ne most days. I'm unsure what it is.

[mollitiam]

I’m so sorry you’re going through this. I experience the same it is awful. Advice I was given by a friend who also suffers from Endometriosis. Be persistent with GPS, if you’re not be g heard, speak to another GP. Change practice if possible. Not all doctors are as understanding regarding how debilitating it is. Sending you best wishes.

[USgalwthendo]

I have severe endo and I get body pain five days per month. Mostly around my period. Throbbing in nature. And a feeling like I’m swelling up and it’s so painful I can’t wear a bra sometimes and only light loose pants. I attribute that to my endo. About 5 years ago I started to feel bone/ joint pain in my feet so severe I could barely walk. I thought because I had endo that was part of it. Turns out I have another autoimmune disease called Sjogrens. I went to my doctor and they ran a bunch of tests to rule out rheumatoid arthritis and lupus and celiac. I now follow up regularly with a rheumatologist. I believe your pain can be endo, sure. But it could be something else too so maybe just keep a log of your symptoms? I heard AI runs in threes. Once you have one you tend to get more as you get older.

[Vps1980 in reply to USgalwthendo]

I can’t wear underwired bras full stop my ribs constantly hurt xx

[Lilly2010 in reply to Vps1980]

It doesn't affect my ribs it's just my whole body aches a few times a week I'm going to try Epsom salt in a bath tonight but every morning I'm waking up and the back pain I get is so painful to a point I have to get up straight away and within half n hour it seems to go but all day my body just hurts from head to toe I'm speaking with my gp tomorrow about it as I don't see my consultant until April now I'm currently on monthly injections into my stomach so not sure if it could be that or the endo is getting much worse it's just so draining

[Vps1980 in reply to Lilly2010]

I take magnesium as that’s a natural pain killer, but I still get a lot of pain, I think the endo is in my chest unfortunately xx

[USgalwthendo in reply to Vps1980]

I unhooked my bra at work once due to the severe pain.(in an office alone due to Covid) Then forgot to re-hook it as I walked down hall to use the loo. I walked right past a male coworker and the look on his face-lol! I gave him a little thrill. Of course I was mortified and re-hooked myself in the restroom. 😳. I wear loose waist pants and cut the elastic band out of my underwear as it bothers my abdomen too much. Sometimes I also unbutton the top button on my work pants and forget to rebutton them, but I wear long enough tops to cover. Oh well! I try my best but sometimes this illness is just too much. 😜

[Vps1980 in reply to USgalwthendo]

Haha, thank you for cheering me up 😂 if I did that nobody would notice as I’m quite small chested (used to be DD) xx

[Mcmac9]

This is very interesting to hear . I am suffering with quite bad pain. I describe it as a stabbing like pain. It’s in my joints and my pelvis. Some days I’m in tears. I’ve wondered if it’s endometriosis or something else like arthritis or fibromyalgia. I have appointment tomorrow with consultant. Hoping it goes ahead as I’ve waited 8 months for it. They keep cancelling and moving it back. What would we do without each other to talk to?

[Vps1980 in reply to Mcmac9]

I had an endoscopy over 11 months ago, was due a follow up call yesterday, didn’t get one, apparently he was running late, rang back twice to be told he had finished work, rang back today, no answer… nhs are shocking, even left a voicemail with his personal secretary, no reply xx

[Mcmac9 in reply to Vps1980]

Well I had my op 21 months ago and that was private because I was in so much pain. Wait on NHS just to see general gynaecologist was over a year! However all check ups were referred to NHS. Hence them being cancelled numerous times. Getting treated prior covid was bad enough! Now it’s 10 times as bad! I really wish we all has answers and could find things that help us🙏

[Vps1980 in reply to Mcmac9]

Amen xx

[Lilly2010]

Well I spoke to my gp and his reply was "go for a jog and exercise" my reply was well considering I can't move a muscle I doubt I'll be doing that and he went I don't no much about endometriosis so I can't comment and I went ill just speak to my specialist honestly I feel like giving up...but I've spoken with my specialist today and he's told me to keep on going it means the endometriosis is changing I'm on injections into my stomach every month but today is the first day I've had no pain or back pain!! Not being hopeful as this condition can just knock you to the floor any second

[Bespp]

Hi, just wanted to say you are not alone and sorry to hear that you are going through this. I am the same every day (stage 4 endo). I have to get up at 6 am as it takes me a couple of hours for my body to "wake up" changing position from bed to the sofa does seem to help and need to have a steady start to the day. I went for a cupping and accupanture session the other day here in Belfast and woke up the next day pain free and I cried because I had forgotten how that felt. Is good to keep a dairy of symptoms for sure and hope is not another thing on the list but I only have endo diagnosed. Take vit D and magnesium daily too and try to keep a good diet. I find any exercise in the swimming pool it is easier as lower impact to keep myself healthy and moving along with walking my 2 dogs. But agreed, I feel all the pains in the places you have described.