Puffy face?

[Jane781]

Morning all,

I hope you’re all well and Xmas ready!

Sorry for the random post and I don’t know if any of you experience this. I have stage 4 Endo and one of the charming symptoms I’ve noticed (along with cramp, coccyx pain etc etc etc!) is my fave doesn’t look the same anymore, I’ve always got a puffy face until just before my period when for a few days it debloats and looks normal, then after my cycle it puffs back up. Does anyone experience this? I’ve long suspected that it’s Endo / hormone related. Does anyone else have this, or know what hormone is playing up?

Thanks! Xx

[Moon_maiden]

Have you mentioned this to GP? They can do a blood test for hormone levels. I used to get skin issues in the past, can’t remember about swelling though. Could be hormones

[Jane781 in reply to Moon_maiden]

My GP wont do anymore bloods - I had one set and a while ago and said hormones were fine for my age, but given how I feel I imagine the hormones fluctuate with cycle. Does anyone know how to get another hormone test? I might have to get private. I tried to find a local hormone consultant in Brighton to pay privately, but they were all booked up xx

[Moon_maiden in reply to Jane781]

Hormones are always fluctuating, GP’s hate testing. I used Medichecks a couple of times.

Are you on a list for excision or have you had this already?

I was fairly lucky, the original consultant I saw privately referred me to his colleague who was BSGE. It’s important to see the right people.

[Bethleah]

Yes. My face constantly swells up and aches. I have sinus issues linked to the Endo and hormones. Mine can puff up very suddenly even within a conversation. I’m told I have systemic inflammation with the Endo rather than it being located just in my pelvis. It’s a pain as it can feel as though I’ve been hit in the face and goes very red.

[stacylee78 in reply to Bethleah]

I’ve had sinus issues for years. How did you get your GP to connect it with endo?

[Bethleah in reply to stacylee78]

I didn’t it was the bgse once I told them I felt it was linked and they said yes we’ve seen this before.

[stacylee78 in reply to Bethleah]

Ok, thank you. I have so many different ailments but no one is linking them so having lots of different investigations.

[Bethleah in reply to stacylee78]

I went through the same until I saw bgse consultant at Oxford. I now have new ones as I’m peri menopausal 🤦‍♀️I also insisted it was put in writing to me as copy sent to gp . It was a relief to know it was all the same condition. Even family were thinking it’s all in her head. This was the hardest thing knowing this but being certain it was a physical condition. It did take a few years to get it confirmed. Some symptoms I had had for many years which were misdiagnosed.

[stacylee78 in reply to Bethleah]

Yep! Like IBS & allergies & sinuses etc etc

[Jane781 in reply to Bethleah]

I wonder if I could pay to see your bgse xx

[Bethleah in reply to Jane781]

You ask for a referral from gp but sone bgse not accepting cus of COVID. Which part of uk are you in

[Jane781 in reply to Bethleah]

Ahh I see, I live near Brighton in Sussex xz

[Bethleah in reply to Jane781]

You’ll need to Google bgse and see where nearest one is to you x

[Jane781 in reply to stacylee78]

I know exactly how you feel, so many things go wrong down to this crazy illness and try not to talk to people in real life as I just don’t think they understand and will think I’m just being weak xx

[Bethleah in reply to Jane781]

I talk about it to lots of people to raise awareness especially men they often google it 🤗

[Jane781 in reply to Bethleah]

That’s a good plan xx

[Jane781 in reply to Bethleah]

Thank you so much for responding, I thought I was alone ❤️. I’m sorry you are going through this too. Do you take medication? My GP is rubbish, I hardly ever go and when I do I find as soon as I mention anything they’re like “yes well that’s endometriosis”! Xx

[Bethleah in reply to Jane781]

No but am waiting for done to help on kidney side of things. I generally only take paracetamol as meds give me side effects and don’t help just make me feel worse. Maybe change your gp I have a really good gp finally who is proactive listens and takes on board what I say

[Jane781 in reply to Bethleah]

Good idea, I would just love a specialist to help as GP seems to think this is a simple disease which we can take pain killers for and it will go away! Xx

[Bethleah in reply to Jane781]

Even now some gps don’t know about or understand it I gave mine articles from newspapers about it and the nice guidelines but my gp was receptive to it.

[Bethleah in reply to Bethleah]

If I can help more pm me anytime 🤗

[Jane781 in reply to Bethleah]

Thank you so much for being so kind xx

[Lily1986]

Hello.

Yes I have this too and also have significant stage 4 endo. Also my skin can go from looking relatively bright to gaunt and pasty too.Horrible disease and all that accompanies it.

Best wishes to you xxx

[Jane781 in reply to Lily1986]

Best wishes to you, I get exactly the same! I can look a different age and weight within a matter of minutes xxx

[Jane781 in reply to Jane781]

Have you found anything that helps? Did they test your hormones? Xx

[JoJoJokey]

I've got sharp pains in the back of my neck and into my sinuses which are predominantly around ovulation and just before menstruation. I've often wondered if it is somehow endo related? I had to have a course of steroids for small intestine ulcers and had no endo symptoms for 3 months I was on the medication it was heavenly! Not a long term solution though

[Jane781 in reply to JoJoJokey]

So glad you had some relief, I never even thought of sinuses! Xx

[Happyhour]

Hi Jane I am having the same problem with my face. It think it goes down for a week then starts up again. Make me so miserable. I cant wear any of my clothes because i am always bloated.

[Jane781 in reply to Happyhour]

Hi Happyhour , thanks for getting in contact. So sorry you have the same thing. Do you debloat the same time as me just before your cycle? Also, I didn’t always have this, it started happening around 38 - must be hormone related? X