Is this still endo : So I was diagonosed... - Endometriosis UK

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Is this still endo

ChloB profile image
3 Replies

So I was diagonosed with endometriosis after my lap in August 2017 and thought it was all fixed. I was told the surgeon removed everything and then have been put on the combined pill. Which has been fine since August when I’m on the pill during my breaks I’ve had a bit of nausea but only had one sick day which is good going. Until the last 3 days where I’ve been in agonising pain. Cramping constantly and stabbing on and off it’s been so awful I spent 3 hours this evening in a walk in centre and just got told by the doctor it’s probably linked to endo but I don’t know just take cocodamol and ibuprofen you’ll be fine. Is this just what I have now and is what I’m resigned to painkillers, gluten/dairy free diets and days on end when walking up or down stairs ends in tears? I hate this

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ChloB profile image
ChloB
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3 Replies
Alice-96 profile image
Alice-96

Hey! One thing I have learnt about Endometriosis is that there is no cure, surgery may help others more but I know for myself, I got diagnosed in April 2016 and I’ve got another operation booked for the end of February (I’m experiencing a lot more pain now than I did before my first op). I’m on the ‘Endometriosis diet’ which is no gluten, dairy, red meat etc. And I do feel a lot better for it, I also take three types of medication to keep the pain away and use a tens machine as well, which works wonders! If you read up more about it you will see that Endometriosis has no cure but surgery can help - if you’re still having periods, it is likely that it will come back xx

GrittyReads profile image
GrittyReads

Sadly Alice is right, this does seem to be how it goes for most women. What you can do next and in the future, depends to some extent on your age, whether you want children and all sorts of other variables.

Another lap - especially if just diagnostic - may help, as if you have very bad Endo, in certain difficult areas, you should get referred to a BSGE Clinic. They specialise in Endo identification and removal and have the best surgeons/experts - but they are often just for the worst cases. The problem with continued ordinary surgery, by ordinary gynaes, is more scar tissue, and the Endo can just grow back.

Another possibility is the Mirena coil (not an ordinary birth control coil) as this is progesterone only and oestrogen-free, and it counters the oestrogen that causes some of the build up - also a smaller dose than taking tablets and it is in exactly the right place. Mirena coils work for some women - it was brilliant for me - but not all.

Do talk to the advisors at 'Endo UK' link at top of page. They can advise you fully on your options, and explain about BSGE Centres, and any in your area.

Sorry this isn't exactly positive, but please do talk to the 'Endo UK' people - nb there may be an 'Endo' support group in your area.

Take care.

Abi_97 profile image
Abi_97

Hi it maybe still endo but personally the combined pill made me feel 10x worse so if it continues maybe look into a different hormone treatment 😮

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