When do you feel it’s worse?, : does anyone... - Endometriosis UK

Endometriosis UK

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When do you feel it’s worse?,

Littleone88 profile image
17 Replies

does anyone have constant pains ??

Or is it just when you have ovulation and period etc?

My period has ended and I’m still having pelvic/groin pains and a pain shooting down the back of my legs to my foot . Was hoping it would ease up but it’s not as of yet. Sick of takin cocodamols , thanks girls 💓

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Littleone88 profile image
Littleone88
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17 Replies
MrsMarlene profile image
MrsMarlene

I have constant pelvic pain, left lower quadrant pain, left leg burning pain down to my knee and nausea. When I have a flare which seems to happen end of my period and following week I get bloated pain in my stomach, bruised rib pain making it harder to breathe, worsening left leg pain to the point I'm limping, worsening nausea to the point I can't eat, worsening constant stabbing groin pain and exhaustion.

I feel thankful when I'm not having a flare up but every day life for me is ruled by painkillers and whether I can manage to eat. And I still feel sick. Nothing really helps. And noone really understands what I'm going through day to day just to keep going.

Littleone88 profile image
Littleone88 in reply to MrsMarlene

This is just absolutely awful isn’t it.

Do you have any contraception?

Mine all got a lot worse when ii was put on the coil, it made my periods longer and heavy where we before they was like 4 days long hardly no bleeding but they was very painful to the point ii couldn’t move or breathe.

Now ii don’t get that ii just have them so heavy and like 8/9 days long. But now also pelvic groin leg pains just feel so lost and like no dr or gynos even care at all: I’m due w scan September on my cysts they haven’t sent me any letter for tht just tht ii am gettin a telephone call October. Which is no help at all.

Ii have been prescribed higher strength cocodamol for the pain but then ii end up all groggy tired and feeling sick. ☹️

Moon_maiden profile image
Moon_maiden in reply to MrsMarlene

With you on the eating, painkillers and everyday!

It’s one way to lose weight, over three stone so far! Possibly not the right way 🤣 The medical profession don’t seem particularly bothered. They did check for colon cancer, but seems endo related.

Littleone88 profile image
Littleone88 in reply to Moon_maiden

Yeah that’s not a very good diet lol 😂

I’m so sick of even having a body right now ii give up. Pain seems to be getting worse and lasting longer 🤨 not a happy bunny!! Xx

Moon_maiden profile image
Moon_maiden in reply to Littleone88

Just had some pavlova, in an hour or so I’ll know if that was a good or bad thing, but did taste really nice 🤣, didn’t help when I kept picking the cream!

Littleone88 profile image
Littleone88 in reply to Moon_maiden

I’ll keep my fingers crossed for u 🤣

As long as u enjoyed it hey 🤭have u got endo in the bowels then??

Moon_maiden profile image
Moon_maiden in reply to Littleone88

Apparently so 🤣

He felt it during lap and confirmed with MRI. Waiting for BSGE team to have their get together.

Anastasia17 profile image
Anastasia17

Could it be pelvic pains? You could ask for referral to lady physio or, in the meantime, do gentle yoga exercises for endometriosis via online sites. x

Littleone88 profile image
Littleone88 in reply to Anastasia17

Ii have a big cyst in my ovaries I’m guessing it’s due to that ☹️ x

Noodle1984 profile image
Noodle1984

I have both Endo and adenomyosis (and fibroids). My pain never stops in my pelvis. I had a lap in February that helped with my feet neuropathy and some of the pain. But because I still have adenomyosis I always feel like this super heavy pain/pressure.

Try sitting with your legs in the butterfly position. I did a couple of sessions with an Endo pelvic physio and she taught me a ton of different exercises. Her biggest thing, don’t ever cross your legs. You’re pulling all those muscles and stretching them. Lay on your back for 5 mins a day with your legs in the butterfly position. It helps to gently open and stretch the muscles without over extending them like crossing your legs. The amount of tension that leaves your legs when you allow them to just gently rest open is insane. If you can’t afford a specialized physio try searching online for gentle pelvic stretches for Endo.

Also have you tried eliminating dairy and gluten from your diet? I found this to be helpful.

Littleone88 profile image
Littleone88 in reply to Noodle1984

This is brilliant information thank you so much, no ii am a vegetarian and ii eat a lot of dairy and gluten. And with out it ii would struggle with what to even eat.

But I’m at the point maybe it’s for the best ii learn new ways and see what ii can do.

What’s feet neuropathy May ii ask?? Xx

Noodle1984 profile image
Noodle1984

My diet is pretty restricted because I have 15 chronic conditions, several of them are auto immune related so I’m on a low lectin diet. My specialist said remove these known triggering foods and slowly reintroduce them to see if you can tolerate it. Gluten is easy to sub! There are so many good flour mixes (I’ve been gluten free for 10 years). The amount of options now is astounding! I found it helped a lot. The dairy is new for me.

I drink almond milk and eat coconut yogurt. I do have to say I live in Canada and here in North America we’ve bred our dairy cows too much so that they have an extra protein called a1. European dairy doesn’t have this and if you can tolerate dairy (try a week without and then try again). I now only eat European cheeses, we can’t get milk or yogurt that’s European though. I would say if you’re going to cut one out I would say gluten first just solely because European dairy is much less inflammatory than North American.

Neuropathy causes you to lose feeling in your limbs. So for me it’s mostly my feet and legs. Before my lap I had very diminished feeling in my feet and constant pins and needles (I do get it in my hands if I try and carry anything for more than 3-5 minutes). So my neuropathy is caused partially by my Endo, and partially from my fibromyalgia. After my lap I suddenly had a ton more feeling in my feet and a bit less pins and needles.

I would try googling to find a physiotherapist who specializes in Endo or pelvic conditions. It really has helped a lot.

Littleone88 profile image
Littleone88 in reply to Noodle1984

Thank you so much for ur reply it’s very detailed and helpful.

Ii get that feeling a lot in my leg and foot and also pins and needles a lot also.

Ii will tell the gyno that when ii speak her: is there much to ease this it drives me insane ☹️

Ii will look into a physiotherapist. Ii tried other day but they aren’t seeing patients yet ☹️ thanks for ur help 💓

Noodle1984 profile image
Noodle1984 in reply to Littleone88

There is! Magnesium will become your best friend. I have fibromyalgia which causes me to have a non stop crawling feeling in my legs. It’s really bad at night. I take 4 magnesium tablets at night time and it helps so much. Make sure to take them at night as they make you sleepy. At night I also have a warm 15 minute bath before bed with 2 cups of Epsom salts (More magnesium!!) Another thing to look into is trigger point injections. It doesn’t stop my neuropathy but it greatly reduces it.

Littleone88 profile image
Littleone88 in reply to Noodle1984

Ii have magnesium tablets, but ii take one and its 345mg or something and ii thought was only allowed one a day? Can ii have more?

Ii do have the bath with Epsom salts which ii love.

Ii always get random twitches so it would feel in my leg and toe could this be connected ? Ii had put tht down to my constant stress and worry/anxiety

Noodle1984 profile image
Noodle1984 in reply to Littleone88

You want to take a magnesium Glycinate (can have other types or magnesium but the Glycinate helps with sleep and crawling feeling the best) . I take 4 tablets: each one contains 80 mg magnesium Glycinate and 20 mg magnesium malate. My specialist has me on 4 tablets at night time. You want to be careful that it doesn’t cause you to get the runs. And if it does to just back off on the quantity by one pill at a time. I have severe bouts of chronic diarrhea and don’t have an issue with it. But the twitching in your legs is most likely due to the Endo which the magnesium should help to greatly reduce.

Littleone88 profile image
Littleone88 in reply to Noodle1984

Thank you so much for ur reply means a lot.

Ii will look into the tablet u have suggested. Hopefully they help.

Hope ur feeling relief atm and managing to take it easy 💞

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