Flare up: Hi Guys, hope everyone is well. I... - Endometriosis UK

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Flare up

JJS09
JJS09
21 Replies

Hi Guys, hope everyone is well. I’m just writing on here for some advice.

I’m having a serious flare up right now, severe abdominal pain, shooting pain up through my vagina. Basically feels like there is someone carving a pumpkin inside me. I’m currently waiting for a laparoscopy but I’m in so much pain I don’t know whether to head to a&e I try not too as I always feel like I’m wasting my time. I just don’t know how to cope with the pain whilst I wait for the laparoscopy.

Does anyone have any tips on whether it’s worth going to a&e or just tips on managing pain xx

21 Replies
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Endosister19

Go to a and e lovely they can help u x

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Moonglo

Hallo I hope you went to A&E?

That sounds like the episodes I had when my chocolate cysts burst. I was also vomiting and fainting, but the pain you describe is spot on. I had to be admitted to hospital both times.

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JJS09
JJS09
in reply to Moonglo

Unfortunately no I didn’t go, I always feel like I’m wasting there time (as I’ve been told this multiple times during various A&E trips). And my partner isn’t that supportive when it comes to going to the hospital as he just says well there is nothing they can do just wait until your laparoscopy.

You mentioned a chocolate cyst is it possible to tell what kind of cyst you have during an ultrasound. Just because I was told I had a cyst but they just said no further action required.

In fact my doctors told me my scan was all clear but they wanted to do another to check my cycle but when I attended my second one they asked about my cyst which I didn’t know I had and they were shocked that I didn’t know. But nothing was explained to me I don’t even know what kind of cyst it is or anything not even it’s size.

I’m just wondering if it could have been this cyst that I do t really know anything about as I can’t even sit down right now without pain x

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Moonglo
Moonglo
in reply to JJS09

Yes they should be able to tell what type of cyst it is from the ultrasound scan. My scans have all been transvaginal rather than on the tummy. A chocolate cyst (endometrioic) is typical for endometriosis and contains blood. You could also have a ‘simple’ cyst which is full of fluid. In both cases my cyst was approx 6cm (I’ve heard of other ladies with larger ones) and both burst of their own accord, resulting in the pain/vomiting/fainting. Although he was supportive I suspect my hubby didn’t really take me seriously until he had to put me in the recovery position and phone an ambulance.

Since then I have always asked questions- I have regular (annual) scans as I’m monitoring yet another choc cyst: what cyst is it? What size? It’s now shrunk to 1.5cm and they don’t really act on anything 2-3cm or smaller.

Follow your instincts, if you can tolerate your pain then fine, but if you’re getting other symptoms then get them checked out. X

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JJS09
JJS09
in reply to Moonglo

Just an update I had another bad flare up tonight way worse that the one a few days ago and ended up in A&E in agony, tears, screaming in pain the lot. Unfortunately I don’t think the A&E nearest to me are the most helpful, I have bloods done, and internal check with swabs, and a urine test of which I didn’t receive any results (there is a lab at the hospital so usually results are back in a couple of hours) and I was sent home with a box of codine and a “look after yourself”. So I can’t wait for the end of September now to have the laparoscopy and hopefully get some answers 🤞🏻

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Moonglo
Moonglo
in reply to JJS09

Aw bless you! So sorry to hear!

In my case, luckily my husband knew my history inside out and insisted they check their records for my issues (I already had an open case with the same hospital).

I suggest going back to your GP to make sure the pieces of your puzzle are all present. For example, I’m not sure your GP will ever hear you’ve been to A&E so you need this on record.

And keep your own records if you’re not already doing this.

It’s a pain the arse, but very empowering because it makes you the expert on your own body Xx

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EndoJaz

The thing is with A and E they just send u home as more often than not the severe pain subsides when U get there and finally be seen. I just get my hot water bottle and lie down crying and sometimes screaming in pain and after a few hrs it passes until the next time.. I am too waiting and waiting for the next lap. Such a horrid way to live 😩x

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JJS09
JJS09
in reply to EndoJaz

This is exactly me but with my pain it’s there for around 6-7 days without a brake. So I’m up crying, screaming in pain until I’m just that exhausted I fall asleep. It sometimes feels like what I would think a contraction is. It’s horrible I’ve already lost two jobs due to managers not understanding x

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Moonglo
Moonglo
in reply to JJS09

Sorry to hear about your jobs. Have you seen an occupational therapist? Your HR dept should be able to refer you and they should be able to recommend reasonable adjustments to your employer.

Are you a member of a union? That way if you have to attend any disciplinary meetings in future they can support you. Keep a diary of all your pain/flare ups and doctor/appointment letters. I was in the same situation where my boss was effectively trying to constructively dismiss me.

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JJS09
JJS09
in reply to Moonglo

Erm the jobs that I were dismissed from were independent small companies and didn’t have a HR department that I was aware of. I have a diary and I keep all of my letters. The last job the owner was accusing me of lying about having a scan on a Saturday as apparently you can’t go to the hospital on a weekend 😂 I showed her the letter and yet she still wanted to ring the hospital herself to check which I didn’t allow. They also broke health and safety procedures by making me work after I’d been vomiting and had made them aware of it. (I work in hospitality so any vomiting of any kind you shouldn’t be in contact with food) So in a way I was glad to be out of her toxicity.

The job I’m in now are much more supportive and I know where to contact the HR team if I need to. I always try to keep each employment updated with my progress. I don’t really know of any unions but hopefully I won’t have to go through anything like that again x

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Moonglo
Moonglo
in reply to JJS09

What a controlling so and so your last employer was!

Clearly you’re still suffering from a lot of symptoms and I would ask HR for an occupational health assessment. Don’t forget HR will look after the interests of the company, not necessarily yours.

I would also research local unions and try to join one as you need to be a member for at least a month (in my understanding) to get any support. If you leave until you might need it, it might be too late.

Best of luck xx

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EndoJaz
EndoJaz
in reply to JJS09

Yes def like contractions.. that’s how I would describe the agony. Luckily that’s not on a daily basis.. usually the dull ache which is constant 😡 good luck x

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Brambledoggy

Have you tried a Tens machine? If you haven’t I hear they can provide some relief. I bought a Livia device, haven’t tried it yet as my pain this month has been more manageable. Don’t buy from their US site, they’re on Amazon UK and I believe you can buy a normal Tens machine from Boots. Can you send someone out to buy one for you? I get desperate so will try anything once! Nina.

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JJS09
JJS09
in reply to Brambledoggy

I’ll look into this thank you tbh I’d try anything at this point x

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Brambledoggy
Brambledoggy
in reply to JJS09

If you were nearby I’d lend you mine!!! ❤️

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EndoJaz

I have bought one now.. the pharmacist said it wouldn’t help as it’s for muscle pain but I will try anything. Thanks

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JJS09
JJS09
in reply to EndoJaz

That’s annoying I wonder when we will actually find something that will help

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Brambledoggy

Me too, don’t understand the pharmacists response being so negative.....please let me know how it is for you and if it offers you relief....others on here say they did work because the electrical current stimulation serves to distract the nerve ending pain somehow....if not I’ll happily send you a refund! Nina.

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JJS09
JJS09
in reply to Brambledoggy

I’ll let you know once I’ve bought one there quite expensive so I’ll have to save up and if it doesn’t work for endo pain I can always use it for my back pain 😂

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EndoJaz
EndoJaz
in reply to JJS09

I bought mine in Lloyd’s chemist for £12.99!

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JJS09
JJS09
in reply to EndoJaz

Hopefully you get some effective treatment soon as it’s horrible even a dull ache is draining x

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