It will be ok won't it?

[Enilorac1984]

Post surgery and feeling very down to still be in so much pain.

They were just draining cysts and doing a diagnostic (stage iv die on bowel, Douglas pouch etc and artificial on diaphragm). Just need someone further along to tell me its going to be ok. Right now continued pain levels and idea of new surgery is making me feel so desperate.

I want to avoid more surgery at all cost but think my diseases is so far progressed that I will have to go through it.

I'm a capable stable 38 year old but this disease is scaring me.

Caroline x

[groggy-froggy1]

We’re in the exact same boat, I’ve recently just had my laparoscopy and had widespread endometriosis across the whole bottom on my pelvis, both tubes, bladder and bowel which was cut out.

I’m in a lot of pain too, went back to A&E two weeks ago because of the pain. I’m still hoping someone further along’s doing better. It’s nice to know someone else is experiencing this and I’m not alone, I don’t know if this was to be expected as I wasn’t given much guidance or contact numbers if I was struggling.

I’m clueless on what to do too. I hope things get better.

- 18 year old

xx

[Enilorac1984 in reply to groggy-froggy1]

I really hope so too. HUGE HUG. I know it's really hard xx

[Enilorac1984 in reply to groggy-froggy1]

They didn't cut any out this time as they said better to do it all in one go. I wish they had! I just want it gone without having to go through all the trauma of GA and more surgery.

[groggy-froggy1]

We’ll get through it, I hope you get what you need! xx

[aannaa]

Reading your messages here - I felt quite emotional. There’s such solidarity with this disease & knowing you are not alone & part of a community of strong people is such a powerful thing. I want to encourage you both - I also have stage 4 die with bowel, pouch of Douglas, cervical-rectal, endometriomas, involvement of tubes, both ureters & totally frozen pelvis. I personally had excision surgery a few months ago that has been a game changer (of course I don’t know how long this will last) but with specialists help, relief can come. Recovery from surgery has taken so much longer than I could have predicted & the whole ordeal was big for my body. This disease is just horrific & the trauma around it all - diagnosis to surgery & everything in between navigating a chronic illness - it’s huge. Anyone dealing with this disease is another level of resilient. Do you have a team you are able to contact about the pain? They really should be kept up to date & following up with you post surgery. You’re not alone in this!

[Enilorac1984 in reply to aannaa]

Thank you. An endo nurse is calling me from time to time which helps. Where were you treated? I’m scared about exision surgery but also I can’t live like this.

[aannaa in reply to Enilorac1984]

Great that you have an upcoming call with specialist nurse - I found mine to be such a lifeline whilst I awaited surgery & in the months afterwards. I was treated at Southern Endometriosis Centre (Portsmouth QA) - I’m so grateful to that team. Can’t fault them. Its a huge thing undergoing surgery like this & if you chose to go for it like I did, it’s absolutely normal to feel scared. Speak to those around you & lean in on these community groups - you are not alone! There’s a whole community of people who understand the details. For me excision has been life changing & fertility wise my prospects have improved massively. A x

[Enilorac1984 in reply to aannaa]

Thank you. That's good to know. I really regret the surgery I had and wish I'd gone for excision first.

[Peenie123 in reply to aannaa]

How do you know if there is a specialist when you have a diagnostic lap? I’m awaiting this, 2 years post hysterectomy but I have mild Endo diagnosed 23 years ago. Xxx

[aannaa in reply to Peenie123]

Is the centre you are being treated by BSGE? I chose to get a referral to a BSGE specialist NHS centre - who have specialist surgeons in endo who undergo diagnostic lap & excision surgery. You can research your surgeon online to find out their training & specialisms. Aware many people have diagnostic lap performed by general gynea surgeon - but as you have already had a diagnosis on Endo - would really encourage you to check whether the centre & surgeon are registered BSGE. I hope this makes sense. I personally didn’t have to go down the general gynea route as my MRI showed Stage 4 die with bowel - which meant i skipped diagnostic lap & went straight for excision - wonder if anyone else has advise about this. All the best. A x

[Peenie123 in reply to aannaa]

Thank you- I had my GP refer he to a different hospital where the consultant dies have Endo listed as one of her areas. An MRI in January showed a possibility of Endo, adhesions and pelvic congestion syndrome. So do I sit and wait or can I get referred now to a BGSE centre please? Many thanks for all your advice xxx

[Enilorac1984 in reply to aannaa]

OH god I wish I'd had that. Felt so pointless to go through the agony of recovery from this lap ( UTIs, nausea, pain, fatigue) and know I still have to excision surgery at some point. They are BGSE accredited so don't why they did this route. Probably because I said I wanted children so they thought draining endometriomas was the best idea.