New to this: So, my story is that only... - Endometriosis UK

Endometriosis UK

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New to this


So, my story is that only recently Ive started getting severe abdominal pain and I have most symptoms related to Endometriosis. I do have Polycystic Ovaries also and I have spoken to a friend that has been diagnosed with Endo.

I have a scan booked for the 12th and I've asked for a laparoscopy (I think that's what it's called) if nothing comes up on the scan.

I don't know how anyone can live with this, I have had really bad pains for about 7 weeks now, and I cannot stand or do anything really.

I'm just looking for support and advice as the people in my life, although they're all being supportive it's hard for them to understand what's happening.

15 Replies

Hi there! I have endo and PCO too.

A scan isn't the best way to look for endo, it doesn't really show anything so I'd definitely push and go through with the laparoscopy!

Has your GP prescribed any pain Medication to put you on with? I found Naproxen helped me a bit.

It's very Difficult to live with chronic pain, people don't understand how much it brings you down and affects every part of your life.

Don't let the doctors fob you off and try putting you on the pill/injections to 'manage' symptoms, it only suppresses them, really push for a diagnostic lap, and then you can go from there and get the treatment that's right for you.

Sorry I can't be of more help! Hope your scan goes well xx

No, it's just so nice having someone understand.

The scan is what they want to do, I've already asked for a laparoscopy but they won't do it until after the scan. They want to check for popped cysts and whatnot. At least if they do it and there's nothing I know too that it's not cysts.

I've been told to fight for a diagnoses and I'll defiantly do so. But they could try and put me on the pill as I've been on it since I was 12 for irregular periods.

I really appreciate the reply. :)

Hidden in reply to JustSomeGirl_

It makes sense to have a scan first in my opinion, I was almost 100% diagnosed by my scan, due to the presence of endometrioma (chocolate cysts) and then it was confirmed in my lap xxx

JustSomeGirl_ in reply to Hidden

I agree, having a scan could be helpful. I'm just ready to know what's wrong and put a name to it. The worst part about all of this pain is not knowing right now.

Hidden in reply to JustSomeGirl_

Most scans don't show endometriosis since the tissue blends into the other tissues within the pelvis.

At the same time and endometrioma can't be confirmed during a scan since there are various other kinds of cysts.

There's also retrograde menstraution that can occur without endometriosis being present in some women.

JustSomeGirl_ in reply to Hidden

I understand it doesn't show by scan but as I've already said they're checking what's going on in my ovaries first to see if a cyst has burst or anything else.

I will hopefully having a laparoscopy if nothing is found during the scan. Also, they will not do a laparoscopy until I have a scan.

Hidden in reply to JustSomeGirl_

What I'm saying is don't let them fob you up if nothing shows, they tend to do that to lots of ladies.

Ooops I didn't read about PCO, if your ovaries are covered in the cysts from it then there's a chance that can cause pain.

Hidden in reply to Hidden

This isn't true, an experienced sonographer can identify endometriomas on a scan, as they have different characteristics to other types of cyst x

Hidden in reply to Hidden

However depending on which sonographer you see and the technology of the device used its give or take.

Hidden in reply to Hidden

I can only comment on my own experience but both scans I have had positively identified endometriosis and then laps confirmed it. Therefore my experience of scans is that they can be very useful initially to be followed up by a lap xxx

Heloo85 in reply to Hidden

My scan diagnosed an acute abdomen. Fluid, swelling ect and although it never diagnosed endo, it clearly showed something wasn't right. I was stage 4 though!

i hope you get the answers you need, it's so awful not knowing! Can I ask, if before this, did you get pain from the PCO? Can you tell the difference?And do you do anything other than the pill for PCO? Sorry for the questions, I have a few things going on and I just ignore PCO because I can't tell what pain is what any more! Or if it is even painful, I really don't know!

Thank you xx

Everyone is being so supportive, that's exactly what I was hoping for when I joined this. Ask what ever you like, I tried replying yesterday but it wouldn't send.

I always had cramps due to the PCO but I had it for so long I just dealt with it every day. I can tell the difference as I've never had pain like this before. And no, the pill is the only thing I've done.

I really hope this helps :)

Hey there love. I'm sure you have a handle on medical issues, from what you've said I think a laparoscopy would be the next step for your medical team should nothing show on your scans. If it helps to know, I had an ultrasound that showed nothing of any alarm - so then I got a laparoscopy. I was diagnosed with endometriosis, had a load of stuff done. My symptoms got worse very quickly as well, I was in so much pain all the time before the laparoscopy life basically sucked, really bad. I know how you're feeling, being in pain all the time is bad enough - not knowing for sure what's causing that pain makes everything worse. Just be kind to yourself, do things that make you happy, surround yourself with people who will listen to you and help you smile more. It's hard to be around people who don't understand when you don't have to energy to explain how you feel, don't feel bad about that. Chin up sweetie, there IS a light at the end of this crappy tunnel. Best of luck x

Thank you so much, I really appreciate everything. I have many people supporting me, I live with my boyfriend. Although he's very supportive it's just hard for him to understand. There's been tense times because we don't know what's going on with me. I think he's just finding it hard because he can't do anything to really help. I just want to know what's wrong with me so I can deal with it and get the help I need.

Thank you again for being supportive :)

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