Pale skin during flare ups

[Lily1986]

Does anyone else get a really washed out, pale almost grey skin during flare ups?

My Mum often comments on me looking very pale but I caught sight of myself in the mirror yesterday and my eyes were dark underneath (despite having had a long nap), skin so pale with an almost greenish grey tint. Not very attractive.

Feel like I haven’t slept in months.

I’ve got very severe stage 4 Endo with a lot of bowel involvement, relying a lot of pain relief every day now and treatment options have pretty much run out except the final surgery I’m allowed. This surgery would be total pelvic clearance and stoma.

Previously had 5 surgeries and during the last excision they removed left ovary and both tubes, I was left in pain every day after that surgery and the disease grows back within months worse each time.

So fed up of everything, trying to deal with the NHS at moment is too stressful. Appointments continuously cancelled and then put back two months. Having to wait over a year for consultation with colorectal. Just a total nightmare 😢.

[Tangoandmax]

Hi Lily!

I’m not sure of my stage as I’m yet to have surgery but recently had an MRI highlight DIE, with bowel involvement and uterosacrel ligaments. My uterus is completely tethered to my bowel now, with an ovary stuck between.

It’s taken 8 years of being fobbed off/useless scans, useless consultants to get to this point. Everything with the NHS is so hard - it’s beyond beyond stressful, so you aren’t alone. Im also taking pain medication daily, barely sleeping whilst I wait for my first appointment with the specialist consultant at the BSGE centre. Estimated date is August

Just wanted to confirm I’m the same re. Pale skin. Have you had your iron levels checked of late? I’m on my third lot of prescribed iron in the past three years, they’ve never investigated it (not a shock - even though you’d think they would!) but the various bleeding/period issues drastically cause my iron to repeatedly drop. Could be worth having bloods checked.

So sorry you’re going through it. 🤍

[Lily1986 in reply to Tangoandmax]

Aw thank you so much. I’m so sorry you’re going through this nightmare, it does usually mean stage 4 unfortunately especially if bowel is involved. It’s ridiculous and cruel that we’re left to suffer in this way. I’m constantly worried or feeling guilty for having to take so much pain relief but not many other options.

That’s a very good point you’ve made re iron.

Interestingly my iron levels came back very low in blood tests about 6 months ago, they advised me to buy some iron and vitamin c which I’ve been taking but I’m doubtful it’s strong enough. I’m going to ask them take my blood test again, thank you 😊.

Best wishes to you, I’ve followed you so if you ever have any questions I can help with I will try my best. ❤️

[Tangoandmax in reply to Lily1986]

I feel exactly the same re. Pain relief. I’m constantly juggling how much I can cope with because I dont want to become reliant on cocodamol.

I’ll bet the iron has continued to drop. They should give you a prescription. I think your ferritin level is supposed to be between 11 and 30, mine has dropped to 6 on three occasions, deff worth keeping an eye on.

I have a million questions if you don’t mind me messaging you privately. My MRI results weren’t even explained to me, I only saw the results on the referral letter. It’s so hard listening to everyone be thankful for the NHS, when all I’ve ever experienced is terrible care

[Endofitall]

I’m so sorry you’ve been through so much. I definitely do and get same comments from family. I also get bad menstrual migraines that tie in with my endo flares and the migraines really give me that sallow look.

[Lily1986 in reply to Endofitall]

Aw thank you, I’m really sorry you’re having to deal with migraines on top of this awful disease. I remember having migraines when I had the mirena coil and they were awful. Thank you for reassuring me I’m not alone re pale skin. Think I’m going to stay in bed all day today, been feeling rough all week but tried to at least get washed and dressed but today I can’t face it. Best wishes to you ❤️

[HT267]

Hey Lily, I'm the same as you get ashen pale and just generally look 'ill people were starting to ask me if I was OK at work amd honestly just hated being pale as a constant reminder of being unwell so I invested in a tinted moisturiser! Still look paler than normal but less sick and made me feel more myself aswell

[Lily1986 in reply to HT267]

Aw thank you, it’s reassuring to know it’s not just me. That’s an excellent suggestion, I’m going to look at tinted moisturisers right away. Thank you ❤️