MRI for diaphragm endometriosis

[MyStar86]

Hi,

I have had multiple surgeries for endometriosis however my diagnostic lap was not done by an endo specialist so I am worried that he didn’t check the main area where my pain is upper right quadrant of abdomen. He did remove endo from my pelvis and ligaments then referred me to endo specialist for the bowel endo. The endo specialist and bowel surgeon only went to the area and pelvis where my initial surgeon said there was endo they didn’t look at my upper abdomen. I am concerned how the pain is getting worse as I went on to have a total hysterectomy with my initial surgeon in April he put me on oestrogen only hrt after however I have still been adding my Femodette pill in to endure I had progesterone.

Can an mri be done of the upper abdomen not just the pelvis for endo? I just wondered if it would be worth trying to get one vs another laparoscopy as my poor stomach can’t handle more surgery after the hysterectomy.

Any advice would be welcome xx

[Avourneen]

Apparently the diaphragm is one area thst it is very hard to see endo on a scan. I had an MRI which showed DIE everywhere else but nothing in diphargm but having spoken to a couple of surgeons they have said that for diaphragmic endo it won't show up there. I guess they can see other areas there and see if things are pulled out of place but this area is harder to see.

But the upper right quadrant of your stomach can hurt for a lot of reasons I had that and I did have an MRI and ultrasound and I had gallstones which can cause lots of pain and a hiatus hernia (but I needed a gastroscopy for that). Apparently producing too much eostrogen for years causes the gallbladder to not work very well so gallstones are more common in women with endo.

You can take medicine to break them down so it might not mean another op.

I was trying hard to avoid another operation but as my endo has come back and I also have a lot of pain between my ribs and high up I think I'll have to have one. But if I were you I'd go to a gastroenterologist and get refered for a scan of your upper abdomen abd it will show if it is gallstones or something in the upper viscera. I asked a gynae to check the MRI too you don't need two scans but I'd check for gallstones first as that is where the pain ususally is.

Good luck

[MyStar86 in reply to Avourneen]

Thank you, I was diagnosed with gallstones at 18 and had my gallbladder out in 2010 when I was 23. However I did go to see my bowel surgeon to discuss and he talked me through about sphincter of oddi dysfunction so I’m trying to find a good specialist that focuses on it and does ercps as a normal mri isn’t helpful for that. I have found a couple in London I am based in Dorset but need to get someone to help me. I don’t think the gyne would want to go back in via a lap after 3 in a short space of time and my hysterectomy in April.

It’s very scary I don’t know why I am in exactly the same pain 24/7 as I was before they even found the endo so all the surgeries and hysterectomy have given me zero relief. It’s just awful my nhs gastro tried to blame it on the endo causing nerve damage but that’s a load of crap I had the endo in 2016 and I developed this upper right stabbing pain and evil guts in 2020 lockdown so no one has looked or examined me for it properly.

Think you are right I will see the private gastro to discuss the sphincter issues and raise possibility of endo that wasn’t looked for properly as it wasn’t an endo specialist that looked all around the endo specialist only went to the pelvis and lower bowel/rectum etc.

Thank you for your help. I might post something asking if anyone has any recommendations on sphincter of oddi dysfunction gastros anywhere in the country as I’m getting desperate and scared xx

[Avourneen in reply to MyStar86]

Not at all. It's such a massive frustration isn't it ? We go through all this grief and sepciallly surgery hoping things will improve but very frequently it only improves briefly. My gynae did the same didn't bother checking further up. I'm pretty sure it is that the endo has reached way up into diaphragm, I'm even suspcious of the hernia diagnosis because I know lots of times it's actually caused by endo.

It is scary because you just don't know how you can ever get it sorted out. And with endo there is the danger that every other problem can be blamed on that when it might be something different. I'm certain they won't want to operate again so soon after hysterectomy. Covid has mad everything so much more difficult so no one has been able to get anything done, it also makes going in to hospital much scarier.

Then all the top docs seem to be in London so there's the rigmarole of having to go down there. I have a lovely gastroenterologist he is super nice, kind and very good listener but whether he is a goood surgeon I have no idea.

Maybe check on here for the sphincter of oddi thing, I really hope you get someone that can give you some help soon. Check out which are the best scans for that. The truth is we sort of have to be our own doctors in terms of finding out what to do as GPs don't have enough knowledge. Wishing you all the best on your quest for some proper help. Keep going you will get there. xx

[Katielaa in reply to MyStar86]

Hey, I’ve just had a full hysterectomy, endo excision and asked my surgeon to look at the diaphragm because I had exactly the same pain. I had gallbladder out in 2006. After surgery he said their was massive adhesions on my diaphragm which was most likely causing the pain rather than the endo x

[BloomingMarvellous]

Sometimes we get really awful pain because our bodies have contorted themselves to handle the inflammation, pain and adhesions, so the most wcommon location of left sided pelvic/bowel endo pulls all the ligaments in the hips into strange places to “cope”.

Some of these ligaments attach directly or indirectly to the diaphragm , this can then follow up and sort of twist the neck and shoulder on the right . ( They tend to compensate on the opposite quadrant. So lower left look to the upper right side of body ) The main uterine ligament is the width of 3 fingers which is amazing to think of - once you realise how big it is it makes sense that being misaligned will cause so much havoc . You can end up like kind of corkscrewing internally to manage the pelvic stuff. Result more pain, wonkiness and the system ( including stomach, liver and gallbladder) can’t really function properly creating all manner of havoc. Sometimes it’s like being a badly put up tent by a drunk crab on uneven ground.

The bottom line being while there’s always the possibility of endo directly being around the diaphragm etc it may not be the case and instead the horrible pain and dysfunctional digestion comes from the corkscrewing to deal with the pelvic crap. It puzzles me that surgeons and drs don't consider the moving body mechanism when dealing with a whole body illness like this but hey 😬.

I found surgery was part answer, some supplements, plenty of water and a specialist physio programme with a medic who was concerned about endo. Am still working on it. A lifetime of wonky has set body patterns that I have to stretch out and ease - it’s easy to slip back and be slack but being largely out of pain is the reward for me.