endo in mid 40s and questions…: I’m sorry I... - Endometriosis UK

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endo in mid 40s and questions…

endotheline profile image
15 Replies

I’m sorry I’ve not posted for so long. I’ve had two surgeries before on my endometriosis and I’m now mid 40s.

The last surgery was a good 5 years ago now and I just know it (or something) is back. The old tell tale signs are so frequent. But I wanted to know if any of you lovelies have ever had any if the following as not something I got in the past:

* the feeling a belt is being pulled tight constantly (even when my endo pain gives me a break) all the way round the body including the sides (very low level/pelvic level) … it’s a constant bothersome ache deep down

* sciatica

I don’t know if they’re connected to endo or if it’s something completely different to worry about as well.

As a busy and stressed full time working mum of two, I am scared to actually find the time to resolve these things but a colleague had a health scare recently and it’s making me reconsider my health and its importance.

Thank you all xx

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endotheline
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15 Replies
Moon_maiden profile image
Moon_maiden

Hi

Your health is really important, I ignored it all and regret it now.

A tight belt is quite a good description, I can’t wear anything tight round my waist as it hurts, been like that for years but got worse in recent years.

Ask your GP for an MRI and referral, it’ll no doubt take a while but you’ll have got the ball rolling.

endotheline profile image
endotheline in reply to Moon_maiden

Thank you xx really appreciate the response. I think I’ll book an appt soon.

nanomyous profile image
nanomyous

I like your name. I'm sorry you are having problems again. I have both symptoms. The tight belt feeling is not constant but I get it when standing up, bending and after lifting heavier items - I think it might be from endo on the uterosacral ligaments. I also have sciatica in my right hip so I can't sit upright and down the leg, again probably from the uterosacral ligaments. Amytriptiline was good (but caused weight gain and my weight's a problem), also turmeric reduced the aching.

I hope you find a solution soon.

endotheline profile image
endotheline in reply to nanomyous

Oh gosh I’m always scared of meds that put weight on. Hard enough mid 40s to keep it decent anyway. I do think I need to sort this out but I’m half scared and half worried about taking the time to do it. Ok I’m 100% scared!

nanomyous profile image
nanomyous in reply to endotheline

I'm sorry I really didn't mean to scare you (I'm three stone overweight and breathing is fattening 🙁). Good luck with your appointment! 🙂

endotheline profile image
endotheline in reply to nanomyous

No, you didn’t scare me. Just the whole process does (and I’m scared of everything). It’s just nice to have someone to share your story with.

Roellen profile image
Roellen

Oh my that's a fabulous name- LOVE it 😍 I'm in a similar situation- endo, busy mum to 2 young children. Like you, I used to say "I don't have time to work on this" but no am thinking we must make the time. For both ourselves & our families. If we ignore our health it will have big impact on everyone. Another issue fir me us, when it's endo related the reality of slow to diagnose, difficult to treat, daily impact in life makes it seem like Everst to climb! But try we must...

endotheline profile image
endotheline in reply to Roellen

I actually forgot that I had a moment of genius when setting up my username years ago!! Haha. You are right. I always de-prioritise myself but a colleague had a health scare recently and it’s out things in perspective. I want to feel healthy and basically top notch! Not like this!

BloomingMarvellous profile image
BloomingMarvellous

Slightly off piste comment on this one. Putting on my acupuncturist hat there is a meridian right around the waist called the Belt meridian ( no prizes for ingenuity on that one !). It is involved with the governance of sex hormone regulation and gall bladder function. It often “tightens” which is a fab description btw , when the hormones are yo-yoing out of whack and can really contribute towards lower back pain and posture wise what I call a “duck arse” when the bum sticks out and the belly extends forward and out. We endo crowd see it as part of the “endo belly” phenomenon. The shortening of the back muscles and lengthening of the front ones also pulls the whole front and creates tension on the shoulder blades and neck muscles meaning we get headaches from over tight neck muscles. On the back it squishes all the vertebrae together and can lead to a nerve pinching sensation and nasty back ache . When the internal ligaments of the uterus are also side leaning it can create an almost twisted down hip or forward making one feel like a corkscrew.

Not fabulous huh 🤔?

All is not lost though and this is what I do for myself and can do it it mid walk or in a quiet spot if feeling awkward….If you put your open hand ( thumb towards back , fingers towards your front ) resting just above the hip bones both sides - as if you are creating a belt or telling a bunch of arsy folk what for 😉- one side the muscles or skin will feel more taunt and even painful. Concentrating on that side o poke about on that line and find 3 points of tension ( one’s usually forward, one between the front and back and one towards the back) and firmly - gently pressing in and hold the maximum ouch point until it releases- don’t rub just hold . It will help the muscle tension loosen and help the body realign. Once that happens the diaphragm can work again so breathing ( always a good option) is easier . Long term I’d look at working on specific specialist pelvic physio ( NO KEGELS) to help with the over tightened pelvic floor. The lovely physio at @corerecoverypt has fab explanations and tips.

It’s a useful management tool and I find it great when everything is shouting at me physically during flares. It just takes some of the steam out of the situation xxx

endotheline profile image
endotheline in reply to BloomingMarvellous

Wow. Thanks so much for your lovely response. What you’ve described sums it up literally perfectly!! I feel almost concertina’d up at the base of my spine and I have had neck and head aches too but I didn’t think they were linked. I’m going to really try what you said as sounds a good thing to try. I did speak with a GP today and as nice as he was, I need to actually go in (trying to get an actual in person appt fills me with dread). I’d asked about doing physio in the meantime but he suggests not until they work out if I’ve got two separate things going on…or linked. The joys!!!!

BloomingMarvellous profile image
BloomingMarvellous in reply to endotheline

Sounds pretty much it no ?

It’s always reassuring to know we aren’t bonkers as well and it’s “a thing”.

While you’re waiting it’s worth listening to the @corerecoverypt Angie Muller talking and explaining core issues with Leah Brueg @leah.brueg . There’s a list of her podcasts and I think it’s about number 56 or 57. It explains a lot . Hope the release points ease things a bit xxx

endotheline profile image
endotheline in reply to BloomingMarvellous

thank you so much xx and I’m so glad you totally get it!

BloomingMarvellous profile image
BloomingMarvellous in reply to endotheline

Polite response to GP.

1)No Specialist pelvic physio will do harm while you sort out the source. It’s largely breathing techniques….

2) It will be the Endo Centre that has access to these physios not the GP !

Gothchic profile image
Gothchic

hiya, I just wanted to comment to say that I also have sciatic type pain that literally drives me mad at times as I never feel comfortable and I also get the belt of pain around my lower tummy and back, some times the pain travels up towards my ribs and it feel like a rod has been placed between my ribs and hips and unless I’m positioned completely straight the pain is awlful. My pain is main right side and im waiting for surgery to remove DIE so yes your pain could very well be endo coming back.

All the best to you xxx

endotheline profile image
endotheline in reply to Gothchic

Thanks for replying. It’s all worsening and I’m feeling even more fed up than when I wrote this post a couple of days ago. I am lucky to have private medical with work but I am still not looking forward to the process :(

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