Expediting success?

[ailis95]

Hi all,

I’m at the point where I can’t walk without crutches, the pain down my legs and ankles is unbelievable. The throbbing in my sides feels like my ovary is trying to escape my body. I can’t stand straight or stay upright for more than a few minutes.

I can’t concentrate on my job. Painkillers aren’t helping.

I’m at a loss as to how to cope with this level of pain and the impact it is having on my quality of life. I feel completely lost and like my life has been completely ripped away from me by this disease.

Whilst I appreciate surgery is not a cure, the only thing keeping me hanging by a thread is knowing I am on the list for excision surgery at a BSGE centre.

I just wondered if anyone has had any success with expediting surgery? Or success on cancellation lists? (Which I am already on)

Thanks

[charlatan]

Hi,

I’m so sorry to hear what you’ve going through, I’ve been there (pre-surgery). I was told they couldn’t possibly give me date for my surgery what with fallout from covid and all, then got a call out of the blue saying they’d had a cancellation and did I want to schedule my surgery. Nearly bit their hand off. Anyway, I can’t be sure that my ‘strategy’ worked or if was just sheer luck but a few months before I decided I was going to do all I could to push myself up that list. Called my endo nurse frequently to tell her the pain was getting worse, asking for stronger painkillers at higher doses, explaining how I felt like I couldn’t cope and so on. I mean, this was all true but I decided keeping it to myself wasn’t doing me any favours. Like I said, might have had nothing to do with it but couldn’t hurt.

I know you said meds don’t help but have you tried amitriptyline? Works differently to others painkillers. Made a world of difference for me when morphine wasn’t touching the pain. Would recommend it to anyone.

Good luck x

[ailis95 in reply to charlatan]

Thank you so much for your response.

I just started amitriptyline yesterday for a second time at a higher dose so fingers crossed I’ll see some positive impact over the next couple of weeks.

I’ve also been regularly keeping in touch with the endo team doing exactly what you did so I hope I have a similar outcome.

How have you found things post surgery? Has your pain improved? X

[charlatan in reply to ailis95]

The surgery changed everything for me. Pain and nausea have both almost completely gone. Felt like I’d been hit by a bus post-op but totally worth it. Unfortunately, the fatigue has stuck around but two out of three ain’t bad.

[ailis95 in reply to charlatan]

That’s great to hear! I’m so pleased surgery worked well for you 🤗

[Endolemon]

Hello 🤗 I have been waiting for my operation for 2 months now, asked for cancellations as well. Think to call consultant' secretary and ask where I am on the waiting list 😊If you are struggling so much why not apply for PIP and ESA benefits 💛