Can you describe your pain: Everyone says... - Endometriosis UK

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Can you describe your pain

Vps1980 profile image

Everyone says they’re in pain but can you describe your symptoms please? Xx

29 Replies

It ranges from feeling like my uterus is on fire, to stabbing pains, to nerve-type pain down my legs, lower back and hips. Then on top of that body aches from the fatigue, migraines from the hormones (both those from the coil and I'm assuming my own doing whatever they feel like doing...)

So, in summary, some combo of some/all/none of the above based on cycles, the kind of day etc...

And it's worth noting that everyone gets different types/levels of pain - so it's very much individual to a certain extent!

Vps1980 profile image
Vps1980 in reply to EndoSuckss

Thank you, I’m just trying to gauge if my pain is fibroids or endo xx

EndoSuckss profile image
EndoSuckss in reply to Vps1980

Have you had a lap/endo diagnosis or still in the investigation stage?

Vps1980 profile image
Vps1980 in reply to EndoSuckss

Only had ultrasound xx

Varies alot. Alot of hip pain that radiates to my back down my legs. Get Swelling in my right side and painful. Heavy pressure feeling in uterus and random shooting pains. Prior to the pill really heavy painful periods.

I do get some other issues but I'm not sure if they are endo related:

I do get some bleeding from the bottom however as I've has a period for 10 weeks it's difficult to know if this is a symptom or just from bleeding in general.

After a sleep I get a feeling on my right hand side like an organ or something has been squashed. Have to lie straight and. Take deep breaths. After a few minutes it eases. I really don't know if its endo related but Dr seems to brush it off everytine I tell them 😂😂 xx

Vps1980 profile image
Vps1980 in reply to AMJ88

It’s so hard getting through to doctors isn’t it, I’m currently waiting on a call, apparently I’m on the list for today xx

AMJ88 profile image
AMJ88 in reply to Vps1980

Nightmare lol. I've been referred to gynae in july and an urgent referral went in last week and the dr said that even with an urgent referral I could still be waiting months. Its physically and mentally draining. Hope they call you!!!! Xxx

Vps1980 profile image
Vps1980 in reply to AMJ88

Aw I hope you get your appointment soon lovely, just spoken to doctor, she is writing to gyno to see if I could have an mri, also being tested for allergic asthma xxx

AMJ88 profile image
AMJ88 in reply to Vps1980

Aww that's fab. Hopefully they will get you in soon xxx

Vps1980 profile image
Vps1980 in reply to AMJ88

Fingers crossed for us both ❤️ Xxx

Hi, at the beginning and end of my period its a chocolate brown colour, I have really painfull periods which come from my pelvic area right through to my lower back and that radiates down to my rectum with results in stabbing pains. It's like a dragging pulling sensation. I get light headed with the pain , pain that also radiates into my upper thighs.

Vps1980 profile image
Vps1980 in reply to Ronsk

Thank you for the response xx

Before my opp I used dread each month when I was due , I had lower back pain the endometriosis was stuck every where that it was squashed my bladder in half that's why I was weeing alot, the other pain was a crippling pain like I was being squeezed inside its hard really to distribe , at first they thought I had fibroids like the size of a melon , MRI scan showed the endometriosis where it is built up it presses on spinal cord where its stuck over womb ect every where.

Vps1980 profile image
Vps1980 in reply to Bluesea7

See I do have fibroids and lower back pain, wondering if it’s just fibroids causing the pain xx

Bluesea7 profile image
Bluesea7 in reply to Vps1980

When you have a MRI scan that should show up what it is they said the symptoms are same ect as endometriosis, I did have a CA125 blood test first which was very high they saw me very quickly as they thought it was cancer . I'm glad it wasn't. It's the not knowing and waiting, I hope they sort you out very soon . ❤

Vps1980 profile image
Vps1980 in reply to Bluesea7

Aw bless you, that must of been stressful, I’ve asked for an mri xx

Bluesea7 profile image
Bluesea7 in reply to Vps1980

That's good that will show up what the problem is my other scans just showed a big blob that's why they thought it was fibroids , MRI you might go in feet first if it is for over 30 mins they will stop for a 5 min break so you can wiggle your toes ect

Vps1980 profile image
Vps1980 in reply to Bluesea7

I’ve had brain and spine mri in the past, the problem is the gp is just asking the gyno if I can have one, he might say no, the gp had never heard of mri to diagnose (shows how much they know) I do have fibroids xx

Vps1980 profile image
Vps1980 in reply to Vps1980

Sorry I’ve already told you I have fibroids haha brain not with it today xx

Bluesea7 profile image
Bluesea7 in reply to Vps1980

Hope they get it sorted for you , my gynecology was really good he had his own school of training gynecology as well I guess I got lucky when I had him as my surgeon he was really well respected by all the staff he certainly knew what he was talking about and explained everything really well to me . We are all on hear if you want to talk more ect, takecare.

Vps1980 profile image
Vps1980 in reply to Bluesea7

Hope for us all then xx

My pain is mostly right sided, feels like someone is stabbing my abdomen with fire. I get this pain radiating down my right thigh. My pain is an aching pain daily but during my period and ovulation I get waved of stabbing bent over moaning pain where I feel nauseas. Daily I experience an aching pain on my right ovary and lower back. I am regularly fatigued from this pain mixed with the pain killers I am on. Hope someone can relate to this :)

Vps1980 profile image
Vps1980 in reply to Nicolepat48

I get those symptoms plus chest pain and shortness of breath xx

Nicolepat48 profile image
Nicolepat48 in reply to Vps1980

Im so sorry to hear that.. chronic pain is awful. I thoughts are with you xx

I feel like you’ve pretty much described my exact pain! 😂😫

Sounds silly but its so nice to relate to some one especially with chronic pain, as much I wouldn't wish this on anyone. It really messes with your head. For a while I really struggled with doubting my own pain when I had good day. I think this was because my doctor didn't really listen to me and at the time people around me were making jokes about me being a pill popper. This group along with a very detailed pain diary has really helped with the mental side of chronic pain so im glad in a weird way you can relate when you saw my post.

The pain is on my right side and feels like someone is stabbing my insides. It radiates down my right hip, thigh and down to my ankle. I also get random spasms in my right leg and it feels like a trapped nerve. I get back ache at the bottom of my back right across to both hips. It aches, it can be a dull pain or sharp pain and I get this weird feeling on my right side inside my abdomen/near my right ovary that feels like someone is scratching me from inside with their nails. The pain is daily but when on my period it’s 100 times worse - I can only describe it as contraction pain! It feels like I’m going to give birth to my insides basically and it makes me double over. It makes me feel dizzy and nauseous too. Around ovulation, I get dull cramps with the occasional stabbing pain thrown in to keep me on my toes! I get the aching/stabbing pain around my right ovary area. I feel permanently tired, especially when on my period. Hope that helps! Also for a bit more of background history, I am currently waiting for an appointment for my laparoscopy and hysteroscopy as I have had a transvaginal and ultrasound scan to investigate - they only found a 2cm Dermoid cyst after doing these. Due to all my symptoms, the gynaecologist has now started querying endometriosis and wants to do the lap and hysteroscopy to find out if I do have it and also remove the abnormal cells I have from a biopsy he did at the beginning of this journey and potentially remove the cyst too while he’s in there.

Vps1980 profile image
Vps1980 in reply to Bluerock7

Thank you so much for the response, really hope you get sorted soon! Mine is in my right sided chest and ribs and I get shortness of breath xx

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