Endometriosis UK

Share your unusual endo symptoms please!

I thought it would be interesting to create a list of less common possible symptoms of endo, to see how it affects us all and see if there are any we share that we might not have connected to endo before. Obviously with lots of these we can't prove if they are connected to endo or not so just post anything you think is connected!

I'll start:

Heart palpitations

Low immune system (getting colds/coughs much more often and taking ages to get better)

Itchy eyes & dandruff (?!?)

Never had any of these before I got ill with endometriosis! X

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Night sweats

My sweat smells like sour milk when I get my period and when I get ovulation bleeding, apparently due to hormones. (Hasn't happened since my lap over a month ago).

Clicky hip, sounds odd but I get pressure that builds up around my right hip as if I need to pop it?

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Getting four periods every five weeks is horrid.

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I get clicky hips too haha!

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We should start a band!!! Pop it like its hot! xx

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I too get heart palpitations and itchy eyes. It’s so hard to try and work out what’s connected to Endo and what’s separate.

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Yes, heart palpitations

Spasms and twitching in my side, enough to expect an alien to burst out

Shooting pain in my leg followed by a limp for a few days.

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Pains in leg which feels like ‘growing pains’ similar to when I was a child. Radiates down my leg or sometimes just in my ankles or knees. Weirdly I had it so bad in my wrist yesterday and it’s always when I am due on, on or just after my period! X

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Hiya. Greaf idea for a post! Check out my A-typical endo symptoms post. I have none of the usual symptoms such as heavy bleeding and pelvic pain ..My symptoms are as follows:

Chronic itchy skin

Hot flushes or chills

Drenching night sweats

Nausea and loss of appetite

Pains in chest and around rib cage

Shallow breathing

No period/ bleeding

Thanks Claire x

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That's very interesting, thanks! I will x

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To those with night sweats if you are taking an antidepressant from the SSRI OR SNRI FAMILY ( lexapro/ Zoloft et ) they commonly cause night sweats as a side effect

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Thats interesting to know. I personally take no anti depressants but would be interesting to hear if that's a theme for others. My night sweats are horrendous and I have to dry myself off every few hours with a towel on a bad night as I'm dripping :-(

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Wow that is so wierd. Is it worse near your period?

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Yeah definitely (although I don't really bleed much it's still at 'that time') before being diagnosed with endo they tested me for early menopause as my symptoms fit that more...i don't have them every night thankfully x

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Hi I can only agree with you - was prescribed amitriptyline as a painkiller couple month ago - and I never ever in my life used to have this night sweats. Just getting off them as these don’t seems to work for me because off other side affects. Thanks for mentioning this side effect :)

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Omg I was just about to post and ask if any had itching! X

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Ready for this...

Dizziness worse at ovulation

Persistent continuous wooziness worse at ovulation

Sense that things are moving more then they are worse at ovulation

Sharp ransom pains anywhere but especially left breast

Nauseous

Hunger at ovulation

Loss appetite with period

Invreased temperature with ovulation especially head and left side face

Bloating before and during period

Indigestion and heartburn

Headaches

Insomnia

Increased libido with ovulation

Flu like symptoms at ovulation and just before period

Bowel and now rectal

Pains worse with period

Frequent ruination especially at period

Weakness especially in legs just before period

Insomnia

Unable to tolerate smear test

There’s more just cant think of them all at moment

Foggy brain

Xx

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I have foggy brain all the time too. Can't work out if it's a symptom, side effect of medication or stress/emotional response to everything that is going on :(

Hope you start to feel better soon x

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Hi it could be any or all of them . I am better for being off all medications except paracetamol for pain. Trying physical therapy to help with stuff but v long slow treatment. X

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It's interesting about the eyes and dandruff. I'm yet to have my lap and be diagnosed but I have those problems too. Never suffered with it until things started going wrong. All my symptoms have started since coming off the pill to try for a family. Does that tend to happen?

I also get

Shooting headache pains

Lumps and bumps under my skin mainly in my ear canals and nostril that become so painful.

Ovulation pain.

Sore breast

Terrible mood swings.

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Headaches

Eye pain and sensitivity

Morning nausea

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I also get morning nausea! Makes it so hard to get up in the morning x

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I didn’t know other people got morning nausea just thought it was me! X

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Tbh I thought it maybe due to crohns or celiac the diseases I'm being tested for but many women with endo seem to get that 😮 I only eat 5 small ginger snacks in the morning because I cant stomach food 😮 X

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How do you get tested for crohns or celiac? because I really want to get tested to :)

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I went back to the doctors a year after the pain started and basically said look I've lost 37lbs and I dont know why so test me 😤 Its one of the hardest things to request a test for because they dont listen 😢 I'd say keep visiting the doctor and pushing 😮 X

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I have no idea if they are endo related.

Unexplained symptoms I have are:

Swollen and painful knees

Swollen and stiff hip joint (left side)

Blurred vision and complete loss of vision for minutes at a time (doctors can't explain what's causing this).

Shivering/ trembling (randomly for no reason)

Breathlessness and palpitations

Temperature control issues (either boiling hot or freezing cold)

Urgency to urinate, frequency, burning, stinging and shooting pains in vagina

Nausea

Bruise really easily

Muscle spasms (mostly just my arms sometime legs as well)

Itchy skin all over but face seems to be the worst - I think around ovulation

Also swollen painful breasts around ovulation

Mood swings 😇👿

Depression and anxiety

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Love this idea for a post 😉

Fluctuating weight gain/loss throughout the month.

Acne gets worse before ovulation better after.

Mood swings

Achy throbbing legs

Shaking weakness feelings

Painful fuzzy bowel movements ovulation and period

Random bouts of nausea

Rubbish immune system

Wee loads also incontinence especially on period

Fatigue/insomnia

Back pain

Mygraines

Recurrent Miscarriages

Don't know if all related to endo but think they could be

💗💗🤗😘😘

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I'm waiting for a diagnostic laparoscopy and hysteroscopy, but have suspected endometriosis. Some of my weirder symptoms:

- Heart palpitations (not sure if this is more anxiety related!)

- Shooting pain down left leg from my groin to my shin, aggravated by walking.

- Pulling feeling in my pelvic area when I lean back (rather than sit up straight).

- Fainting and vomiting when I have a bowel movement, esp. on period and when ovulating.

- Rectal bleeding when on my period and a few days before.

- Dizziness and nausea when my bladder is full.

- Bladder gets full REALLY easily, I have to wee a lot more, but not with urgency like I would if I had cystitis, if that makes sense? I can literally drink half a cup of water and need to go.

- Headaches that won't budge with painkillers, lots of water or sleep.

- Often freezing cold, despite everyone else being warm.

- Really painful breasts for up to two weeks before my period.

- Pain under my ribs at the front, and on my right side under my ribs round the back. Almost feels bruised, like someone has jabbed their fingers under my ribcage. This comes and goes.

- I also have the itchy skin thing, especially around ovulation. Hadn't made the link before, thinking my skin was just dry. But it's not really, it just randomly itches.

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I have to wear like 10 layers to keep warm 😂😂

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So weird that some of these are very similar!!

I also would say that I have:

Itchy eyes

Frequent urination, and it’s so bad that I can drink a cup of water and I am desperate to go like 15 mins later.

My hands and feet are freezing all the time.

I get the worst pain in my thumbs at times?! It’s so weird!

Itchy skin but this may be from tramadol...

I think that’s my weird ones... others are quite usual I think with endo!! X

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very much like everyone else boiling hot or freezing cold,pain in right hip and down right leg,pain in both knees and under ribs,swollen ankles,feet and fingers, I have really severe allergies,asthma and exzema all get worse when im on.crap immune system,reacurring piles,just a bit knacked really.but weirdest thing is a little twitch that feels like my phone vibrating just above right ovary doesn't hurt just vibrates really freaky and major swelling in my tummy I can go from flat to 4 months pregnant and back in a few hours thank god for elastic trousers also get really really tired there was and advert for complain vitamin shake years ago and the woman deflates like a ballon that's me like all the energy has just been sucked out of me .

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I have had endo for over ten years and I can not have it removed as it is on my liver and kidney,

This is my first post as I am wondering if anyone has same symptoms I’m in my third week of pain and I bent over yesterday and felt like my stomach got stuck in a cramp as such, very painful, feeling bruised by it today. As it bleeds can it cause problems if my organs have become sticky?

I’ve thought for a long time it was in my bowel but i gave jyst been diagnosed with diverticulitis aswell because of the rectal bleeding.

My systems are awful swilling my whole body esp my right side, arm, leg hip just totalling drained, I catch every sickness under the sun too.

My mother just bought me selenium and folic acid to help? Any one tried before?

Just so people know I eventually had a mireana coil put in with extra provera as it’s not in my womb, helped a lot almost half the time in pain but recently had it removed and stopped all meds because I’m trying. All my full blown symptoms for four weeks are back and because my diverticulitis gets pushed by my swelling off endo I’m sick now 8 weeks since , feel like I’m drowning with pain, I can’t do anything I end up worse. Hoping these vitamins help me

Any reply’s be great 😉

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