Unsure what to do: I'm just really... - Endometriosis UK

Endometriosis UK

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Unsure what to do

xximilixx profile image
3 Replies

I'm just really struggling and torn right now. I can't sleep, won't stop bleeding, my pain is a good 8/10 the majority of the time. I've got pain medication which usually helps, or makes me feel sick, so I can only take it at meal times, which is leaving me awake with the pain.

I've got my ultrasound appointment in two weeks, but every day I'm struggling, spend most of my day crying, can't leave the house and it's getting to the point where if I miss any more Uni I'm going to be in trouble.

Has anyone had any experience of going to A&E with extreme pain before diagnosis and actually got the ball moving? I'm patient in most situations, but its 4am, and I feel like I don't have any more options, I can't spend another two weeks plus feeling this way.

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xximilixx
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littlebrownbird profile image
littlebrownbird

I'm so sorry to hear you suffering so much.

It's good to know you have a scan booked, may I suggest you call the hospital and see if you can get the scan brought forward or if someone else cancels you can attend in their place at short notice.

Your GP may also be able to help you with this.

Secondly, have you shared this information with your university via student support services? (I don't know what the current official name for this is)

They will be able to support you and explain the situation to your course director/tutors so that they have a formal explanation for your absebce/illness and ease your anxiety about this. You will not get in trouble and they will be able to provide you with support. Ditto for parents.

Thirdly, I know you are in extreme pain but this does not constitute and emergency and you will be referred back to your GP. The system just doesn't work like that and it won't get you seen by a specialist any sooner.

I hope these suggestions are helpful and you are able to seek oout a way to get treated sooner.

All the best x

NW248 profile image
NW248

Have you been booked for any other tests, seen a gynaecologist preferably one that specialises in endometriosis?

An ultrasound will only rule out other things, it is unlikely to diagnose endometriosis but and MRI scan would. You may have to get referred for an MRI by a gynaecologist though, GPs can't do it in my area so I presume that applies to other areas.

When I was on my path to diagnosis I had to go to A&E for pain management several times. If the pain is getting out of control, it's perfectly OK for you to do this. Endo pain isn't a stubbed toe. Unfortunately in my experience A&E are not able to do anything more than that and it won't get you seen quicker but if you are having unmanageable pain, they can help with that.

Please also go back to your GP and talk to them about better pain relief plus anti sickness - they can give you tablets like ondansetron which will stop you being sick due to pain meds. There are also lots and lots of different pain meds to try and you can safely take them in combination if one type alone isn't enough. Sometimes it can take a while to find what works for you.

take care. x.

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