Scared, confused and exhausted

[Jodie111]

Good Morning Ladies,

I am new to this group and would value your advice.

I’ve been up to A&E 15 times this year with pain, I saw a comment earlier that describes my experience perfectly, I was treated like a lying little drama Queen and sent on my way with another pill to pop. I’ve had to become a complete nuisance to demand a scan on what feels like my 100th trip to the hospital screaming in pain they hospitalised me and found I had stage 3 endometriosis which is attached to my bladder and my bowl. Massive relief to be diagnosed but then the information of fear comes. I’ve thought I’ve had a water infection for months and that’s the pain that reduces me to tears most days. My poor partner has been putting up with the countless hospital trips and it has massively impacted out relationship. I’m booked in for my operation at the end of October (now self isolating) and I’m just reaching out for advice really as I’m petrified of the op and then what if won’t work. I’ve been off work since lockdown and the isolation is taking its toll. Darkness is falling around me as the pain is constant and it’s hard to keep that brave face mask attached for the sake of my nearest and dearest. Any tips pre or post surgery would be very appreciated 🙏

[kelsbels88]

Hi Jodie,

You are not alone. Although everyone is different I had bowel endo where my bowel went up and then down (like a hairpin turn) but was stuck together. I had a really long surgery where they removed part of my bowel, a large cyst and a Fallopian tube there was the possibility of an ileostomy which gratefully I didn’t need to have.

I hope you get sorted soon I remember saying to my hubby “are you worried about me having surgery?” and his reply was “not really because these are specialists treating you, they know what they are doing”. I think as long as your surgery is being done by someone who knows endo and how to excise it you will be fine although anxious.

I ended up having a couple of complications after surgery but o can now say I’m doing really well 5 wks post op. And getting ready to hopefully go back to work.

Surgery is scary but I found it helped thinking of life after the surgery how you may be feeling when it’s gone and you can have some sort of life control back.

Kelly xx

[Jodie111 in reply to kelsbels88]

That’s amazing and yes most definitely I need to focus post op. Thank you for your advice and glad your on the mend.

[Moon_maiden]

Hi

I think most here relate to the drama queen bit, felt like that last year. It’s great they did the scan and you had a diagnosis from it.

I had lap in Feb for what was thought superficial, now passed to endo specialist. Fully with you on the constant pain, what are you taking?

The end of October isn’t far off in the big scheme of things and sounds like your partner is supportive. If you can open up the communication and talk about how you feel. If you can’t is your GP good to talk to?

[Jodie111 in reply to Moon_maiden]

I’m very lucky I’ve a supportive partner and lots of people to talk to.

[Love_Yellow]

Hi Jodie111

I’m sorry to hear you are going through so much pain, I definitely understand what you are going through as I’m the same, I’m currently waiting for my Second OP within a year.

My pain is so unbearable I’m taking 60mg Codeine and paracetamol and Morphine. Hot water bottles constantly attached to my back and belly.

Please may I ask have you had your first LAP as that’s only how the can be 100% it endometriosis.

Xx💛

[Jodie111]

They didn’t need to do the Lap as I had an MRI which they could clearly see it. I’m on pregabalin, paracetamol, ibfophen and codine. I hate the codine though as makes me feel weird. May I ask why your on your second op? It’s just horrible in this day and age we’re allowed to be left in so much pain x