Diaphragm surgery

[Jesglos]

Hi all.

Has anyone had surgery for endo on the diaphragm?

Finally got an mri done on my chest and my suspicions were confirmed that I do, indeed, have an endo nodule on my diaphragm .

I have widespread stage 4 endo in the pelvic area also, and I am now under the care of the endo centre at Southmead in Bristol.

I’ve been offered 2 separate surgeries on pelvis, then diaphragm, but I’m not sure I’m brave enough!

Previous surgery to remove ovary and tube as well as getting rid of some endo in pelvis was tough, and didn’t seem to improve things for me, although it was done by a general gynae, which I now realise shouldn’t have happened.

Any advice/experiences to share would be much appreciated.

Thanks

[endo_the_stigma]

Hi lovely! So sorry you're dealing with this, I know how crap it is...

I had my laparoscopy in June to excise the endo they had seen on my MRI (widespread throughout my pelvis and bowel) and while they were in surgery they somehow picked up on a nodule of endo on my diaphragm and excised it while I was there without having to make any further incisions. I'm not sure how they do it but that's what happened to me and it just meant that my recovery was a little harder because I was getting breathless and tired more easily. I was also tachycardic throughout my surgery and they had to keep me in recovery for an extra hour because my oxygen levels wouldn't stabilise and I'm guessing this was due to the endo on my diaphragm?

My MRI didn't pick up on the diaphragmatic endo so I just had the normal lap surgery but maybe its the case that this just isn't recommended when they are already aware of the endo being there?

Hope this helps a little xx

[Jesglos in reply to endo_the_stigma]

Thanks so much for replying!

Sorry for what you’ve been through and I hope you’re ok now?

My consultant said he would do the surgeries separately as it would be too much to have both together - hence your difficulties I guess!

Was your op successful and are you feeling better for it? x

[endo_the_stigma in reply to Jesglos]

Thank you lovely. Yes that makes sense if they already know its there to minimise risk I suppose

The op was successful in that they removed all the endo as far as I am aware, however they did do ablation on my bowel without my consent or a bowel specialist present and I specifically said I didn't want ablation as it leaves the root of the endo behind. I've had even more bowel issues since surgery and found out my surgeon isn't a BSGE Endo specialist so not convinced she got it all because my periods and general cycle pain are still horrendous so I'm paying to see a private specialist (who referred me for surgery on the NHS as I couldn't afford private surgery) to look at my surgery photos and notes to make sure everything is okay/as it should be..

I really hope your surgeries go well and you have an okay recovery xxx

[Jesglos in reply to endo_the_stigma]

You poor thing!

Hope you get the help you need xx

[Hanstacey]

Hey! Sorry you're going through this I have confirmed endo on my diaphragm, which was diagnosed via lap about a year ago.

They ablated what they found, but unfortunately it didn't work. The impression I get is that because the diaphragm is so thin, the endo can infiltrate it to such an extent that burning it off doesn't really address the problem. It can also hide behind your liver, which is more difficult to get at in lap surgery. I'm going private and having it (hopefully) properly addressed in robotic surgery in a couple of weeks time.

First time round, the recovery would have been fine, but I got my period around 5 days after the op and was in a LOT of pain (because the ablation hadn't gotten rid of the endo). That aside, I didn't find the surgery knocked me out too much.

I get the impression that lap surgery for diaphragmatic endo usually goes from below (i.e. your abdomen, via your belly button). My surgeon this time around is also going from above (i.e. between my ribs) to make sure it's cleared up on the other side too. Might be worth asking some question about that?

Feel free to ask any questions!

Hannah

[Jesglos in reply to Hanstacey]

Hi

Thanks for your reply.

I had a follow up appointment today, and I’m now on the waiting list for full hysterectomy, and then surgery on the diaphragm.

I tried Dienogest in an attempt to avoid further surgeries, but it did not agree with me at all! As Prostap didn’t work either, unfortunately I have to be brave and face up to surgery.

At least I’m with a specialist this time and I will certainly discuss with him how is is going to deal with the diaphragm.

Please let me know how you get on, and good luck 🤞 x

[Hanstacey]

Oh bless you – I'm so glad to hear that you have a path forward! I'm on dienogest - have managed to get past the side effects just about, but it's utterly failed at stopping my periods 😒

Hopefully the surgery will clear this up for us both! x

[Jesglos in reply to Hanstacey]

I’m 51 and my periods had all but stopped but Dienogest restarted them!! Pain got worse and I couldn’t stop crying (not like me at all) also couldn’t stop eating!!

Take care xx