Had enough!

[Lins80]

After 14 years of having the condition and 7 operations later, I am still in a lot of pain and now need a bowel operation to remove the endometriosis of the bowels. The consultant is still refusing a hysterectomy as only 42! I am tired all the time, irritated and in pain. We won’t talk about emotions and the crazy hormones haha

Now I have been referred a to a private healthcare doctor in Cambridge (thank goodness, I don’t have to pay that bill) to see what can be done!

You get to a point where you learn to live in pain and it shouldn’t have to be that way!

My advice is keep nagging your gyne doctor about your condition as you know your body better than any expert!

[Simo7]

I agree! You do know your body better than anyone. Though I have put up with pain in my leg and hip for years, some of it is due to endo and adenomyosis but found out last year that I have a problem with my hip joint, so it always pays to probe more. I think due to being in pain for 26 years (not constant, there have been reprieves) you put everything down to endo. There’s no evidence that a hysterectomy will help your endo’. Especially as it’s on your bowel too. Mine was also on my bowel and luckily they just shaved it, didn’t need a resection, so get someone that has a specialism in endometriosis of the bowel, are you with a BSGE hospital? Is the Cambridge Dr specialised in endo’?

Sorry not trying to sound like a downer but after a lot of operations it pays to have the right surgeon and the right treatment, I’m sure if I’d had decent ones earlier I wouldn’t have been as disabled by this disease or needed 10 operations.

Wishing you well xx

[willywalk in reply to Simo7]

Hi,Im due to have a bowel op in 4 weeks time.

Im just wondering what to expect,with regards to prep beforehand ,isolation and recovery after as i feel the hospital havent said alot but this is the 2nd cancellation and been waiting 2 years

thanks xx

[Simo7 in reply to willywalk]

Hi, I had mine at Colchester too. They’re usually quite good, so they should call you before for your pre - operative assessment. When they do they usually give you lots of goodies to take home; like bowel preparation to clear you out completely and nutrient shakes 😬. They’re usually quite bountiful with their hand outs, giving you lots of information at the pre-op. I suppose a lot of what they’ll tell you depends on what they’ll be doing. I was really upset before hand thinking that I may need a bowel resection but luckily I didn’t, it was just a shave and the recovery was fine. If you’re under Mr Whitlow, he’s very good at answering questions so just email his secretary with a list of questions and I’m sure they’ll get back to you. I’m roughly same age as you and also waiting for the menopause so fingers crossed for both of us! Good luck with your operation, if you’ve any questions drop me a message and I’ll see if I can help xx oh and get some aloe Vera tissues and Vaseline they may be needed! Sorry tmi but I wish I’d had them!

[willywalk in reply to Simo7]

HiThank you so much for replying.

I had my pre op a few weeks ago and they didn’t give me anything which I thought was a bit weird.

What would I need Vaseline and tissues for? Sorry for sounding stupid!

I am scared but can’t go on like this really getting me down.

Yes I’m with Mr Whitlow he seems nice

Xx

[Simo7 in reply to willywalk]

Hello,You don’t sound stupid at all, sorry I should’ve explained better! They should give you some laxative preparation that helps clear your bowel if they’re operating on/near it. That’s what the Vaseline and aloe Vera tissues come in handy for, it can make you quite sore the amount of time that you you spend going to the loo.

I’d email the secretary, I think she’s called Jackie. She’s really lovely and just ask if you’ll be getting a bowel preparation prior to surgery. I know they’ve been doing a lot of pre-assessments by phone due to covid and then a few days before the operation you go in and collect the stuff you’ll need and they’ll explain everything - it’s all written down so it’s simple to follow.

Try not to be worried (I know it’s easier said than done) I just try to remind myself that everything passes - & fingers crossed it will buy you some pain free time - or better still permanently help until menopause!

Take care and any worries message me happy to help if I can xx

[willywalk in reply to Simo7]

HiI spoke to the hospital, I’m going Monday to pick up all my stuff!

They should have given it to me a pre op asses, but I saw someone else as the correct person had covid!

Least I know now.

How long did it take you to recover after the op and how long was you in hospital for?

I’m just trying to plan as I have 5 kids and a job and it’s going to be a juggling act !!

Thanks for your advice with the tissues and Vaseline, I remember from my colonoscopy how long I sat on the loo !

Xx

[willywalk]

Hi,Im going to colchester hospital as they have a specialist endemetrosis unit there.

Im due to have a bowel op in 4 weeks,im not having a hysterectomy as im 49 and they thin as im near menopause it wont be worth it.

They do not seem keen on hysterectomies nowdays.

Let me know how you get on.

Thanks,

x