Feeling helpless

[emmylouise1992]

I'm feeling kinda helpless atm I've had 2 laproacopic surgeries in the last 3years and have severe endometriois in this time I've tried zoladex the pill painkillers and nothing seems to work to help me.

I'm currently 6days into a massive flare up every part of my body hurts I have a huge endo belly I cannot wee! Which is causing extreme tummy pain I keep being sick wanting to pass out going dizzy and that's effecting my eyes ha entirely eaten and I've been bed. Bound the last 6 days and I really don't know what to do! I've been doctors and he's giving me tramadol and anxiety tablets which helps a little but not much and Im in so much pain I can't move debating if I should go to a and e and get seen but am so scared of trying my hardest to get there only to be turned away of for them to say its just a flare up!!

Currently got heat pads and blankets and hot water bottles

Any advice appreciated

Thanks

[Hidden]

How long have you not been able to wee ? Do you mean at all ? Xxx

[emmylouise1992 in reply to Hidden]

About 48 hours a little bit of wee cones out but literally droplets and I really have to push hard to get that out so hard it's starting to to hurt my tummy and groin area x

[Hannah27 in reply to emmylouise1992]

So sorry to hear you're having a bad time of it. I would get yourself to a&e or ring 111 at least and see what they say. Sounds awful, I hope you feel better soon xx

[Kate345]

I’m in a similar situation I’ve been flaring since I came down with a cold and flu..

I’m not as severe As you but I’m in pain, I have stomach cramps, anxiety, lower back pain the usual endo pain. I’m currently on zolodex injections. I’m in the same mind set of I don’t know what to do. I don’t feel A&E is the right place for me as there’s nothing they can do

if you can’t wee tho I’d ring 111. There’s not much they can do about endo but if you’re suffering that bad and it’s effecting you to wee I’d give them a call

[emmylouise1992 in reply to Kate345]

Hi

Nice to know in not the only one! I suffer with my back and anxiety so much its just got to the point now where I am in constant pain every day and I don't wanna trouble a and e as I don't feel that's the right place for me but at the same time I need seeing to because like I say I can't wee and when I try to go cause I got a tummy ache I'm hurting my groin and tummy pushing down to try and go! What's worse is my appointment with the specialist in until the 12th March xx

[Starry]

Big hugs. If it were me I'd decide that issues with basic bodily functioning like urinating and defecating need checking out, they can become dangerous if left.

You mention two laps, but it sounds like excision is incomplete to be having such symptoms. Are you being treated at a bsge accredited endo centre?

Also have you had a cystoscopy to check if you have endo inside the bladder?

Let us know how you're doing xx

[emmylouise1992 in reply to Starry]

Hi yes true It does need to be checked out I now go to a bsge accredited centre but before I wasn't they did two laps and said they had removed some but its made no difference I've only got worse and now it's to the point where I'm in pain every single day and my next appointment with the specialist isn't until the 12th March xx

[Starry in reply to emmylouise1992]

Big big hugs. It sounds like your gynae has done you a disservice and I'd have thought you should have been onward referred already once the first lap failed. You only get the benefits of surgery if excision is full, bsge surgeons have more advanced excision skills training than general gynaes or urologists and they work in a multidisciplinary way with urology and colorectal as needed. I had both endo specialist and colorectal surgeon working on me at once and my endo is completely excised even though it was on my bowel and bladder.

You can get your GP to re refer to bsge centre based on the NHS service spec as you are a 'refractory' case. You don't need your current consultant to do it, but you will need to request a copy of the full notes and operation reports of your two laps so you can send or take them to the new specialist.

This is the bsge NHS service spec pdf or Google NHS specification severe endometriosis google.co.uk/url?sa=t&sourc...

Find your bsge centre

bsge.org.uk/centre/

[BellLady]

Hi! You poor thing! That Endo belly is truly awful! Have you tried changing your diet at all yet? That can help tremendously!! If you have any tummy issues it would help with that too. Most Endo sufferers usually have bad bowel issues too they kind effect each other. Many sufferers are allergic to dairy or gluten or both (which is me) good news is if you are affected by these foods and you cut them out not only does it give you ibs/heartburn/nausea/constipation (any of these) relief it relieves some of the Endo pain and inflammation as well since they effect each other so much. Another one harmful to Endo is red meat and soy they are filled with hormones estrogen infact and that is what Endo feeds on. My pain and Endo belly improved tremendously by diet change. And also progesterone cream use helped a ton. I even lost quite a few lbs when I started it. I use to be more heavy around the middle but no where else.. it was because of my allergy to food and the Endo. Now I'm not that way any more. Hope you find some relief. For more about the diet and creams I used look here rosesandremedies.com/?p=22 and here for more on allergy to wheat/dairy here: rosesandremedies.com/?p=14