Confused, nervous, notnsure what i'm feeling really...

[gemp54]

Hi all,

So after being told i probably have diaphragmatic endo a while back i have tried a couple of different things like going back on the pill to get it under control and also different forms of pain relief. I saw my endo consultant yesterday and she's now recommended i have a diagnostic lap to see whats going on and possibly have a 2nd surgery to treat the endo if they find it. I did have endo in my pelvis confirmed in many places from a lap 5-6 years ago which was treated and my symptoms improved a lot. Having had that news i'm just feeling really weird if i'm honest. After my first successful lap i was really hoping that would be it and to have the pain back (albiet in different places) is gutting. I know there's also likely to be a long wait due to covid so now i feel frustrated knowing theres not much else i can do until i get that date. I know i should be glad they're referring me for surgery but its just hit home that i have to go through that all again and today i just woke up feeling really down. Sorry for the rant but i tried to explain this to my huband and friends and they're all just trying to tell me to be positive. I know they mean well but i just feel like they dont get it. As stupid as it sounds my biggest worry is that i'll wait ages to have the lap and they wont find anything which puts me back to square one. I know its unlikely as i had tonnes of endo in my pelvis before but i cant stop worrying about it. Anyway, if you made it this far reading thanks for listening! X

[luthien]

Hey, sorry you feel all lost

Unfortunately for a lot of us endo does and will come back, to what degree and where is very different for each of us, which I know doesn't help when trying to decide what to do and how best to cope. Usually for most women hormones do offer some relief from symptoms and for some that may be all they need, some will use it so they can have a relatively normal life for now and some may need it until they have surgery and even then for a few right through after surgery. But ultimately as endo relies on oestrogen to grow and all mammals produce oestrogen it will continue to grow thus requiring surgery. When this happens varies as the amount of endo doesn't correlate with severity of symptoms.

The best treatment for endo is excision surgery as this removes the endo and surrounding tissue thus regrowth is less likely, it's still only about 2 to 3 years before some symptoms start to return. That is based on my endo consultants patients, and when he discharges them to the point he hears from their GP about possibly needing to investigate in the next 1 to 2 years.

I can't offer any advice for how to cope with waiting times, sorry, I went private due to waiting times and that my hubby's work offers partners health insurance. (he still has to pay for me, and I have to pay a part of the treatment.

I am in the same position as you but a bit further along; my last lap was about 3 years ago, had endo excised, all good, some very minor symptoms until a few months back, so now I'm booked on for a diagnostic and excision (if they find any endo) on Jan 21st. I don't know if it's come back, but I need to know what's going on.

Sorry rambling on about myself, back to you! It sounds like you have a good specialist so stick with that, see if you can request for a diagnostic, excision and biopsies in one go. Explain waiting times to your specialist, and the pain. Most good endo surgeons will be happy to diagnose and excise endo they find there and then, you just need to push for it. They may say they won't be able to do anything if it's on the bowel, but that's okay and understandable (I needed a separate lap with my specialist and a colorectal specialist for that).

I hope some of that helps x

[gemp54 in reply to luthien]

Thanks so much for your reply for now they've got me gradually upping my amitrityline which i started only started a week ago (based kn my gp's advice) so i hadnt been on it long before my appointment. Hopefully this will start to help and keep me going until the lap whenever that is. The GP started me on 10mg but the endo consultant said i can up it 10mg a week up to 50mg as long as i can habdle the side effects.

I did ask about doing excision in the first surgery but unfortunately as they said its probably on diaphragm they said they'll probably need specialist surgeons in if they're to remove it. She did say she'll try and get rid of any endo on my pelvis in the diagnostic surgery though so that will be something.

I have put myself on the waiting list for cancellations and my work have said they'll support if i need to have it without much notice so hopefully that comes up for me.

Best of luck with your surgery on the 21st. I really hope it helps you

Xx

[luthien in reply to gemp54]

Aww thanks

I hope you don't have to wait too long to have yours, your specialist sounds brilliant!

I didn't do too well with amitriptyline (for my coccyx pain related to endo), if we're taking about the same pain relief. It made me feel really spaced out and not really there, it also says not to drive etc while taking, which if anything says that I do worry, so I stopped after about two night doses.

It's good that you have a supportive workplace, that always helps with things.

Keep us all updated on how things go, when you get your date through xx