Surgery for diaphragm endo and prostap

[pale_eil]

Just had my follow up gynae appt from my lap and I'm very surprised and pleased they have offered excision surgery to tackle severe diaphragm and liver endo. I have to take prostap for four months to shrink the lesions and an mri to stage the disease and locate any hidden nodules. I know lots of you are on prostap so I will have to read up on previous posts but I'm hoping for a reduction in symptoms (a miracle?! ) I also have to take some sort of hrt alongside to help flushing etc. Soooo glad to be getting somewhere after 10 years of agony and no one believing me!!! Just had to share. Any tips or warnings re prostap?

[Arcadia-77]

Can I please ask you who / where will be doing your Diaphragm surgery? Pm me if you would rather.

Prostap, Zoladex or any of the other GnRH drugs don't "shrink" Endo - they just put it to "sleep" which can help with the symptoms for some women. They are extremely strong drugs some women get no relief from them at all, and many get severe side side effects whilst on them and even permanent ones in some cases.

Also my concern would be - many of the leading Specialists think it's not a good idea to have them before surgery, because if they make the Endo less inflamed it might be less visible during surgery so is even more likely to get missed.

[pale_eil in reply to Arcadia-77]

Hi thanks for your reply. I was surprised that they were going to offer surgery at my local hospital as no one there (that I know of) is an endo specialist. And clearly this is the case if they give me duff info about prostap. Bit concerning!! He said he wanted to reduce the amount of area needing excised and that prostap would do this. Hmmm mm. My hospital is raigmore hospital in inverness. (Highlands). It will be joint surgery with gynae and upper gi surgeon. X

[Lms8 in reply to pale_eil]

Same here. I was given zoladex injections before surgery (started the injections in Nov and had a surgery in Feb). Had the last injection in April and have the mirena coil now. Really bad chest pains and trying to get further investigations done for diaphragmatic endo Having another lap in august for a nodule on the bladder so desperately hoping they will also deal with any endo on the diaphragm then...x

[Arcadia-77 in reply to Lms8]

Hi! Have a look at my response, may be useful to you as well!

[Lms8 in reply to Arcadia-77]

Thanks Arcadia-77. Yes, I am at a BSGE endo centre and they have been really great in following up with the RV and bladder endo but seems there might be some reluctance with thoroughly investigating the diaphragm - and I'm guessing it is not the easiest area to spot the endo in the first place. My consultant is now in touch with a carido-thoracic surgeon so fingers and toes crossed things will progress in relation to the diaphragm and will have some relief with the chest pain x.

And yes, like I am pale-eil I too am a member of all the groups going, I think x

[Arcadia-77 in reply to Lms8]

Great & that sounds promising!

[Arcadia-77 in reply to pale_eil]

That does seem quite unusual there doesn't seem to be hardly any Surgeons in the UK doing excision on the Diaphragm, I know that even some of the BSGE Endo Centres are not willing to treat it.

I'm not sure what to suggest.....really not trying to make you worry - but I personally would be concerned about someone doing the surgery there who is not an Endo specialist ie if neither the Gynae or Upper GI surgeon are they may not properly recognise your Endo (as it can have many different visual appearances) and not thoroughly remove it even without you having Prostap?

I think the best thing you can do is get yourself clued up on it there is lots of good info here:

endopaedia.info/subtype.htm...

I would also suggest EndoMetropolis which is a fab Facebook Group, set up by Endo Researcher Libby Hopton (she actually has Diaphragm Endo herself) and there is a specific group for Thoracic Endo that has a lot of info on it as well.

facebook.com/groups/endomet...

facebook.com/groups/Lungendo/

[pale_eil in reply to Arcadia-77]

I am starting to worry a little especially as i am a singer and really need my diaphragm intact!! Thank you for your help!! think I'm a member of every group going already 😂 and I feel I know more about diaphragm endo than all the Dr's and gynaes put together since iv been researching it for years and diagnosed myself. I really expected him to just say oh here's the coil off you go. And I even contacted Edinburgh specialist prior to today's appt to ask about treatment of diaphragm endo but yet to hear back. So got a shock when he said yes I can do this surgery. Hmm. Xx

[Arcadia-77 in reply to pale_eil]

That made me lol - member of every group going!! I can't sing.....regardless of what is going on with my diaphragm! It sounds like you are already doing all the right things, how ridiculous is it in this day and age that we have to do all our own research. If you are on EndoMetropolis you may have seen that Libby has had an ordeal with her Diaphragm recently? She would probably be a good person to ask for some pointers when she's better.

[pale_eil in reply to Arcadia-77]

Thank you I have just gone and joined that one, it looks really good. Thousands of members! Saw libbys post, her story sounds similar to mine. I also read a post about prostap and now I'm really thinking this might not be a good idea!!!

[Arcadia-77 in reply to pale_eil]

Yes it's a really great group! It's international but there are loads of UK members as well, Libby is also a Brit herself but works in the US.

Another thing I meant to say before is according to Dr David Redwine who is involved with EndoMetropolis - only nodular Diaphragm Endo will show up on a MRI Scan so any superficial disease probably won't be visible.

I would really do your research before you decide to take Prostap, imho they are given out too easily and there is not enough warning of how strong they are and what they can do in some cases.