Good morning all. I hope you're all ok in this awful battle 💕
I was just wondering if anyone has had a positive experience with scans?
From abit of what I've read they seem to be disheartening for us sufferers 😏
I have a scan next week & hoping something will be explained for all all this life ruling pain I am in 😞
Thank you in advance ❣
Hi, I had an ultrasound scan at the start of my fertility investigation and they picked up on an endometioma on the scan which then led to my laparoscopy and being diagnosed. The scan wasn’t too bad I was worried it was going to hurt like having a smear but it was fine. I hope you get some answers xx
Thank you for your reply.Ahh that's good.I hope you're doing well.
All this guess work is so draining.
This site has Litrally become my social life now x
Yes I have had several successful scans that have helped me. Both for crumbling spine, cancer and a few others. Keep your chin up and just keep trying and pushing till you get the results you need. Good luck.
Omg bless u 😞 I hope you're doing well ❣
Hello there. I've had endless scans to try and diagnose 2 lumps that hurt like a ****** come period time. And every time I get a different diagnosis. Only thing they seem to agree on is that they don't know what they are.
Doing my own research I've found that they're definitely endo related. "Menstruating tumours" or "cutaneous endometriosis" Symptoms definitely match however having them see that has been a wild goose chase.
So I've given up on scans
Xx
Oh bless u.. it's a bloody battle isn't it 😏We know our Bodies & something defininately isn't right x
Yes it is. Sometimes when I think too much about it, It depresses me. I KNOW something isn't right. I KNOW it's endo. But all I get is shrugs and head scratching and dismissal that it's endometriosis. I get told ' scar tissue' adhesions' 'scar granuloma' and my favourite....' psychological'. I mean what the hell. 🤨
Psycological , what an insult! So disheartening isn't it 😞 Bless u xx
So is your scar tissue adenomyosis ? That can be just as painful can't it? Xx
I really believe that I have scar endometriosis. And that these 2 lumps on either side of my c section scar are endo lumps or endometriomas. Because they only hurt during my period. My GP is the only one who believes me and has been great in supporting me. He's also convinced 100% that it's endometriosis, but he too has found it almost impossible trying to convince all the consultants/ surgeons/ gynecologists and radiologists out there! He's just as frustrated as I am!! 😆. What the hell... He told me there's no cure for it anyway. Surgery only offers temporary solutions. They almost always grow back, sometimes even get worse and/ or spread. And chances are I'll have to keep going back for more surgery. So I thought better the devil you know! So I've decided to go down the diet route ( no sugar, gluten, dairy, red meat) and although much better, it's still there like an angry fire breathing dragon everytime I get my period! I've never felt pain like this. I hate it. 😫
Sounds awful 😞 I feel u.
I hope your route helps u❣
My scans was all clear today, which of course explains nothing for these pains. I'm on the list for a lap, bit in the meantime I've decided to try the diet route too! X
I have had two by two different hospitals. First wasn’t an endo specialist and was kinda a little rough. Second was with my gynae who’s an endo specialist and was the definitely worth it. He warned me when it may get sore and was careful! He found that I had slight adeno and some evidence of endo. I’m on the waitlist for surgery too. Hope you have a positive experience x
Thank you for your reply. I think it's pot luck isn't it 😏
X
It seems a bit like it, I really hope it’s a positive outcome for you. Well, as positive as being told what’s going on or giving you some ideas x
Thank u.I hope all goes well for u too xx
I had an MRI and it found really serious endo and I was then able to follow up with excision.Scans are really good at finding endo but you do need to go to a specialist who does scans for endo not just a random sonographer without the right experience. I haven't used him but everyone says this guy in London is the best Professor Jurkovic. He does ultra sound which is meant to be better for pelvic endo than MRI. MAke sure the person who is checking your scan is a specialist in this field. They are expensive but without a scan you won't know what is going on.
I second Jurkovic recommendation
Ah ok, thank you.Mines just standard NHS.
I am on the waiting list for a lap operation.
I know something'snot right with my pelvic pain, it's everyday now 😞
It's horrible being in limbo with it all, isn't it 😏 x
Yes it's raely miserable at times I'm waiting for my third laparoscopy.... I had one on NHS when I didn't know enough about endo and they just burned off the endo and it grew straight back, then one with a private who was meant to be great who seems to have missed a big chunk of it grwing through my bowels. Having more scans in a couple of weeks, then I guess another op. It's very frustrating that it is so hard to get effective treatment and get it sorted out. If yours is only mild then maybe a lap will sort it all out and you'll be alright for a few years. Good luck, really hope they do a good job. Saty strong remeber the pain will improve once you have had the operation so it's not going to be terrible forever.xx
My ultrasound scans showed nothing but I had extensive endometriosis. I think this happens to lot of people unfortunately. xx
It can happen but usually only if you have been to a sonographer who has no specialist knowledge. Alomst all good endo surgeons send you for a scan before they have a consultation nowadays because it helps them a lot in surgery. there are places where it's much harder to spot endo like on the diaphragm too that makes a difference, but I know literally hundreds of women whose endo was spotted on scans. I'm not saying though that there are not cases where endo is completely missed on scans, that is certainly true but I think it depends massively on who does the scan and how good they are. Who did yours? Was it recently or a while ago? TBH I think what we need is a computer that is trained to read scans this would cut down the costs and if the AI was really well designed it would probably spot problems with more regularity. Interpreting the scans and being able to see what is on them seems to be extremely variable depepnding on which person checks them. For the moment the best thing is to see a sonographer who is known to be very accurate.
Hi,
Sorry to hear you’re in such awful pain. Often Drs refer for ultrasound as it’s the least invasive, it’s relatively quick to arrange, no downtime and will rule out anything else such large fibroids, or other untoward pelvic conditions, and to ensure you have normal anatomy. If you did have a large endometrioma then it may expedite surgery. I wouldn’t pin my hopes on getting a definitive diagnosis with the scan but it’s often the first step in the line of investigations.
Hope you get sorted out. 🤞
Hi so sorry to hear ur in so much pain. After having numerous scans on the NHS , I went to Jurkovic, he really is good and I would recommend him all day long , he diagnosed me with serve stage 4 endometriosis whilst the NHS scans did not detect this. I am now on waiting list for surgery . Hope you get some answers soon xx
My ultrasound showed a "complex cyst" on one ovary but that was as far as it went. The MRI showed the endo. I'm not sure how useful ultrasounds are for endo to be honest. I'm surprised so many drs suggest them.
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