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Endometriosis UK

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Shan1234 profile image
13 Replies

hello, I’m new to this page and just looking for advice, I was diagnosed with endometriosis 3 years ago where I had a laparoscopy to burn it off, since November i have been in pain every single day, I’ve tried pain killers, hot water bottles, cold baths to help ease the pain and nothing is helping me. I am waiting for a laparoscopy again but it might be a while wait, I’m just wondering if anyone has any ways to ease the pain which is in my pelvis and radiates in my lower back and the back of my legs

13 Replies
Lindle profile image
Lindle

Hi - have you has scans pre or post lap and do you have a discharge note/report saying where the endo was?

Shan1234 profile image
Shan1234 in reply to Lindle

hey I’ve had scans pre lap and post they they couldn’t find anything and put it down to IBS until I had the laparoscopy 3 years ago and they told me after I had endo and it was on the lining of my womb which they burnt off, I haven’t got a discharge note saying I had endo due to the hospital messing my report up and just saying that I had a enlarged bowel this is why it’s taking a while for me to wait for another laproscopy :(

Lindle profile image
Lindle in reply to Shan1234

When you say you had the lining of the womb burnt off do you mean endometrial ablation to stop periods, which is different from treating endo as that is outside the uterus.

Lower back pain radiating down the legs (most often the left) is a sign of possible rectovaginal endo behind the uterus which is classed as severe and must only be treated in a specialist endo centre. I would want to be sure as to whether or not I might have severe endo before undergoing another lap in general gynaecology. I would get a copy of your lap and scan reports to see exactly what was found and done.

This is the BMA guidance - you need to make a subject access request. There may be some info on your hospital website as to how to make a request.

bma.org.uk/advice-and-suppo...

Hopefully others can share their experience of pain relief.

angeldebs profile image
angeldebs

Hi

I’m new I had this condition for year but was always denied investigations unoand abmormal swear caused a cancer scare.

I really suffer week before as week durnjng my period. I have a four year old I I did have problems conceiving. I am in agony today and I actually only looked it up but chance again to refresh my memory and bang it explains the horrible cycle of pain physical and emotional I go through every month a week before and week of my period may more si half my daily life I can’t function…,I already have other chronic conditions I don’t get support with my consultant made that diagnosis over a month ago brut because he was cancer he head to deferment my go didn’t even call to say they knew the out come or offer support.

I have a bad experience with social services year again see I had to oretend I was well just to get them to stop harassing me how can O even ask for support.

I’m in a deep depression today I just seem to watch life pass me by but I could under understand why half the miners I could function and be productive and the over half lazy (as my mother and family say) I have no one I’m terrified of loosing my little girl off the day I can’t cope. Is there advocacy I turn too?

Thanks in advance

Debbie😢

Cockapoo-2016 profile image
Cockapoo-2016 in reply to angeldebs

Sending you a 🫂 stay strong lovely💙

hedgehog74 profile image
hedgehog74

Hello. I used to use stick-on heat patches. Don't know if you can still get them but they lasted a few hours. Also regularly took ibuprofen 3 times a day. Long term I tried to make a big effort with my diet and do gentle exercise, which I think helped a bit - but easier said than done. Lavendar oil helped too.

Shan1234 profile image
Shan1234 in reply to hedgehog74

thank you!

MAEA1419 profile image
MAEA1419

Hi I’m sorry to hear you’re suffering. I normally keep a heat pad on my front and back. Otherwise one of those heat pads that you can heat in the microwave are good to soothe the pain,I tuck it into my leggings if I’m just at home. If you’re waiting to hear for a date for your procedure,it might be an idea to call your hospital to see if they’ve had any cancellations. I had my second endo surgery on Monday which went well and that was brought forward because of cancellations. Good luck x

Lindle profile image
Lindle

Endo doesn't grow on the lining of the uterus.

CryBaby91 profile image
CryBaby91

hey Shan

Have you tried a plug in heated pad? If hot water bottles help then this should be good too. CBD oil has some good anecdotal evidence that suggests it is effective as an anti-inflammatory, speak to your GP first but it might be useful for you. Yoga is a good way to help with lower back and thigh pain, i use the free YouTube videos "well with Hell's", just put in "yoga for endometriosis" and loads of videos pop up. TENS machines can also be helpful for distraction against pain, doesn't get rid of it all but can help a bit. Xxx

Amelie8 profile image
Amelie8

hello,

Sorry to hear youre in pain 😞

Did you see a specialist in the field? Please see the picture attached difference between excision and ablation.

Also it might be an idea to look at foods that are inflammatory. I personally have benefited from cutting out cows dairy, sugar and alcohol. I still have some bad days but can feel the benefits of cutting the above out.

Also I have a small tens (myoovi) this easies pain. And I have the beyou patches. I also use Copaiba (pain relief) and clary sage (good for hormones) a high quality essential oils.

I hope you have a date for your surgery soon. Xx

Excision Vs ablation
Ree_kap profile image
Ree_kap

Hi hun, have you tried changing your diet to an anti-inflammatory one? Cutting out dairy, refined sugars and red meats? I did this and found it has helped me massively

EndoWarriorz profile image
EndoWarriorz

healthline.com/health/women...

There’s adenomyosis which does grow on uterus - I understand it to be the same cells as endometriosis but growing in a different place- adenomyosis in uterus, endometriosis the cells growing outside the uterus- and I have heard health professionals refer to adenomyosis as endometriosis

It would be great for u if you could chase information from your gp or hospital about your last op. There may be letters on file that can help u piece it together.

Hopefully not too long for the lap appointment, meanwhile an anti inflammatory diet might help? U can go the whole hog and cut everything out and introduce things one at a time- or (less extreme/ less effective probably too but easier to do ) cut out/ down on wheat, dairy, coffee.

Turmeric is meant to help with inflammation- there’s turmeric drinks u can have- Google recipes- which I swopped to instead of coffee- not sure it worked but was happy to try anything!

Ibuprofen, but look after your gut at same time - I was on Naproxen (stronger pain killer) and lansoprazole (to protect stomach from naproxen) before my lap, prescribed by gp

Heat pads as has been mentioned

U don’t mention about periods being a problem- but is common for them to be worse- if so something to reduce / stop periods- tranexamic acid/ birth control - make sure iron levels are ok as everything is harder to cope with if u are fatigued

Ibuprofen gel for your back - I had endo and back pain both higher up- was amazed when the back pain just disappeared after surgery- had been told I may have early stage arthritis, but having the lap stopped the pain- hope that gives u hope🎗

Hang in there, don’t be afraid to chase up your operation and try and get it sooner, say how much u in pain to gp and ask what can be done in meantime to help you, and try find your old notes- keep strong 💪 I hope u find something that helps while u wait for your op, and that the wait isn’t too long 💛

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