Now what? they've found a cyst on a basic... - Endometriosis UK

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Now what? they've found a cyst on a basic ultrasound but is that it now?

betty31 profile image
14 Replies

I got referred for an ultrasound due to listing some symptoms of Endo, the one that got them listening was painful sex etc so they sent me for USS, I was surprised when it wasn't a transvaginal one, but assumed it was because they were ruling other stuff out. They've found a little 3cm cyst, in their words 'just a little simple cyst, nothing to worry about' which makes me thing that's it and they won't do anything else. Could this be caused by Endo? will they just leave it there? has anyone else been in this situation. I always read that Endo could only really be seen on transvaginal, so what now? feel further back than I was before. What do I say now?

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betty31
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14 Replies
Endofaye profile image
Endofaye

HeyI had exactly the same thing last September. They said probably just a cyst and will disappear on its own. But usually they will check again in 4 months time just to see if it's gone or not. If not, then they may do a internal scan. I had this and they said it was a endometrioma due to endometriosis. I've had it removed now and diagnosed with severe Endo. I'd ask your GP to see if they can have another check up in a few months, or if it becomes really painful then keep pushing them. Hope you get it sorted

Faye x

betty31 profile image
betty31 in reply toEndofaye

makes me so sad how every single post has to end in 'keep pushing' it's so unfair

Endofaye profile image
Endofaye in reply tobetty31

Yep I totally agree. It's awful. I've been going to my drs for years and years. I now have a complete frozen pelvis. Endo desroyed my appendix completely and everything stuck to my bowel. ☹️

betty31 profile image
betty31 in reply toEndofaye

it's the bowel that got me thinking. I used to describe this really sharp pain that would completely freeze me in motion, like I'd sat on a screwdriver, thinking it was normal, and my friends (luckily I worked with women who were really open) and they'd be like? what? I've never had that?

Endofaye profile image
Endofaye in reply tobetty31

Yes I know the pain you mean. Like a sharp shooting pain? I've had that but also a dull pain in my right side below ribs is also bowel related.

betty31 profile image
betty31 in reply toEndofaye

like a sudden shooting driving pain which makes you claw the walls if you're using the toilet or sometimes just randomly when you're minding your own business. I can't even finish my sentence sometimes, it just stops my body for a second then goes away like it was never there

betty31 profile image
betty31 in reply toEndofaye

what was the turning point for you? what really got them listening?

Endofaye profile image
Endofaye in reply tobetty31

It was the fact my cyst hadn't disappeared like they said they would they said it's best to have it removed so I had my lap 6 months later after that. I was in such pain in my side but I actually think that was my appendix killing itself now looking back

betty31 profile image
betty31 in reply toEndofaye

I do get the occasional pain on my right side but I never think of my appendix as I always assume if it was angry I'd get appendicitis symptoms, and I compare a lot of my pain tolerance to my periods and because that's a solid 10/10 I don't find it as severe in comparison. But it's definitely worth thinking about

Nerakes profile image
Nerakes in reply tobetty31

Dr's are generalists. They rule out the simple options first, meanwhile we have to endue the pain and discomfort that comes with living with the symmptoms. I trained as the therapy readiographer (treat cancer with radiation) I always struggle with General practitioners. There are a few good ones, who will listen to their patients but too many have a huge ego but without the knowledge of a specialist. I can take the ego if a Dr knows what he is talking about but so many general practitioners don't. It is up to us to take control of our bodies and make GP's really "listen" to us. we live with our bodies everyday. to anyone who is frustrated that a Dr is being dismissive keep pushing, it may seem unfair but it's the only way to get a proper answer. If you don't get a proper answer then do make a complaint, only by complaining can you highlight where there is a problem.

Cocoflower profile image
Cocoflower

Hi, I’ve had transvaginal ultrasound and it’s never picked up. The only way is a lap I’m still waiting for mine it’s so frustrating and such a long process. My symptoms seem to be getting worse I’ve got ulcerative colitis but I personally think it’s bowel endo but won’t know until I have the lap. Keep pushing for a lap it’s taken me 12 years and only now because I’m having fertility problems they are listening. Xx

Dogmad6 profile image
Dogmad6

The awful pain you describe is so familiar to me and many others. Your description is spot on. I have severe and widespread endometriosis including the bowel. Have had excision on several occasions. You are just being fobbed off as ultrasound won't necessarily show any endometriosis at all. I've never had anything show on any basic tests. Only a laparoscopy and only by an expert in endometriosis will give a definite diagnosis. Good luck but I don't understand why it is always so difficult to get a diagnosis. xx

betty31 profile image
betty31 in reply toDogmad6

my brick wall is when they just say 'we'll just treat it with contraceptives so there's no point going through all that' eughhhh

Dogmad6 profile image
Dogmad6 in reply tobetty31

So they are psychic as well eh and know what they are going to find? The care people receive with this insufferable illness is disgraceful. xx

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