Just need to chat to people who get it I ... - Endometriosis UK

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Just need to chat to people who get it I guess

HorrorLover profile image
7 Replies

So after years of being told I just have bad periods, ibs, lactose/gluten intolerance, even that I'm a weak woman by a boss, I finally have a gp who is taking me seriously and is allowing tests for endo, I had suspected for years that, that was the issue but had always been told different things.I'm all booked in for a trans vaginal ultrasound but not really sure what to expect if nothing or something is detected.

I'm not really sure of what I'm wanting out of posting this i just wanted to talk to people who understand I guess

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HorrorLover profile image
HorrorLover
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7 Replies
Pennyheart1 profile image
Pennyheart1

Hi,

Firstly I’m sorry to hear that your boss has been cruel to you. Words and misjudgements can wound us deeply. I can still remember a pe teacher who decided to make an example out of me, the one time I didn’t do pe, in front of 60 girls about why we should still do pe if we have our period (after I had been up all night in pain and was exhausted)…. Not the most compassionate person…

I also went down a route of being told I had ibs and thought myself that I had food intolerances - which I came to realise was far more about my endo.

I had a vaginal scan a while back and it is good at picking up any fibroids, thickness of uterine lining, cysts on ovaries, any abnormalities from inside… but I know some ladies on here have said that they didn’t find anything and that they still were diagnosed later.

It’s definitely worth doing and it isn’t uncomfortable really.

Hope all goes well and this procedure brings you one step closer to finding the answers you need.

Moon_maiden profile image
Moon_maiden

Hi

That’s great your GP is helping 🙂 great you kept pushing, as exhausting as it is.

Don’t be disappointed if the scan doesn’t show anything, unless they know what to look for it’s unlikely they’ll say Endo, but you never know and it’ll rule out other things. That’s the bit you need to remember when talking to GP about results. I had loads but didn’t show on ultrasound, CT or MRI.

You could sue your boss for saying that, it’s horrendous and against the law. The last thing we are is weak.

What do you take for the pain?

poinai profile image
poinai

What a disgusting and utterly unproffesional boss, I'm so sorry. Yeah, I got fobbed off for years too, it's upsettingly common. Glad to hear you have a GP willing to listen now! It really makes a difference.

The ultrasound is a great first step. I personally got diagnosed via ultrasound but it can depend on how severe your endo is and how experienced the sonographer is with endo (and potentially the equipment). As the others have said, if you get told that nothing's come up on your scan, that doesn't mean there's nothing wrong with you.

I hope your GP keeps working with you to get a diagnosis. Just be kind to yourself, it might take time for you to process your results either way

ashleytt profile image
ashleytt

that is awful thing to hear about the boss saying this, not everyone understands how it effects everything!

keep pushing with the doctors, it’s took me 5 years for them to say ‘yes endo, but we have to be put on a waiting list’ it’s good to hear you have found a doctor who is doing the tests!

RosBR profile image
RosBR

Its taken years for me to be properly diagnosed and it really only got properly picked up during a laparoscopy - I had adhesions removed from my left adnexa, ovary, bowel/sigmoid colon etc. none of which had showed up on ultrasound, (lost count of how many,) CT or MRI scans. Hopefully you will get a quicker diagnosis:) I got lucky in that I also have a great GP who suspected endo adhesions. Stay strong and remember that you are the judge of your pain, certainly not some oxygen-thief of a boss. Its hard but, do advocate for yourself and prepare for appointments with Drs and Consultants - I was looked in the eye by one and told that really they had done all that can be done and they could refer me to a physio! I smiled, asked what exactly the physio could expect to treat given that I had yet to have a proper diagnosis, I then asked if she was aware that the gold standard for diagnosing endo is laparoscopy. I was put on a 12 week waiting list after that and still made to feel like a malingerer. It was worth toughing it out as I'm on week three and can actually sleep at night without waking in loads of pain. Best of luck and let us know how you get on! x

Annabelannabel profile image
Annabelannabel

Hi

Definitely don't take your first ultrasound scan as the be all and end all. I think I've had around 5 transvaginal scans including ultrasound scans and the only one that showed endo was the one where a endometriosis specialist could see it and that was 3 years on from my first. I fought and fought and luckily had a great gynecologist and she sent me for an mri which showed severe endometriosis on my uteral sacral ligaments rectum and bowel. Then the transvaginal ultrasound showed it on the back of my uterus. Since my referral to the endo specialist I have received a totally different type of care everything is taken much more seriously. Keep pushing and try and get an mri it picks up much more.

All the best

Annabel

TogetherWeAreStrong profile image
TogetherWeAreStrongModeratorEndometriosis UK

Welcome to the forum, I hope you have found the advice useful, we all understand what you're feeling, you're not alone x

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