Finally got somewhere although it took al... - Endometriosis UK

Endometriosis UK

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Finally got somewhere although it took almost death!


So following on from my last surgery 4 years ago my problems not only continued, but over time actually worsened! It was IBS! It was ‘constipation’. It was ‘anxiety’ and ‘stress’ and ‘fibromyalgia’.

So, I had severe constipation! I had in excess of 20 impactions! I had to manually empty my bowel! As in finger up the bum! I passed blood and snot at times! Sometimes black, sometimes red!

My anus would swell with what I assume was haemorrhoids each month!

I lost my ability to walk! It become difficult!

Drs were always unsure about infection a few times but I forced them to give me antibiotics, thankfully saving my own life unknowingly! BUT I f*caked up one time as I wasn’t sure as the pain eased! Ended up with sepsis.

Got told I had an STI and to go away more or less after spending 5 days hooked to IV fluids and antibiotics.

So now, it turns out, after being fobbed off for 4 years with every diagnosis under the sun, my ovary is actually adhered to my bowel with deeply infiltrating Endo! The bowel is what has been triggering these infections, and the ovary is what’s been causing the bowel issues.

So now they can’t do surgery until all risk of any residual infection has gone, or I will be left with a colostomy bag!

The joys of the NHS and their stance on preventative medicine 🤣

12 Replies

Oh dear! That sounds so wildly frustrating and painful. I hope you'll get the treatment you need soon!

Heloo85 in reply to June_Viola

Unfortunately no quick fix! The ovary that had abscessed is still shrinking so is in fact still infected! And if the try peel the ovary off the bowel while there’s an infection, it will leave a hole in the bowel and I’ll need a colostomy! 😭!

Hopefully it won’t be long though! But not holding my breath! Xx

That’s not good, just goes to show how much we have to push for a smattering of help 🤦‍♀️ I told one GP I’d buy them online, couldn’t give me script quick enough 😂 they won’t risk anything in case it was dodgy and damage health, oh the irony!

Will you have to stay in hospital and have IV for a few days?

Heloo85 in reply to Moon_maiden

Funny enough, all they’ve given me so far is Zoladex! They’re leaving the infection to go on it’s own? 😂! To be fair though, it is! I had 5 days of IV antibiotics in November, followed by 14 days of tablets when I left hospital, then a further 2 weeks worth from GP after I finished them, then another 10 days worth! I’ve been off antibiotics for months and this is shrinking, so my body is fighting hard without antibiotics atm.

You are spot on! Also, if you want a test, threaten to go private! The NHS shit themselves 🤣! They love their easy NHS jobs were they ain’t held accountable, in the slightest, no matter what they do!

I’m not expecting surgery to be soon! I’m on at least 3 months worth of Zoladex ffs!

They won’t take the womb cuz it’s healthy! I feel like my hysterectomy/oophorectomy is happening bit by bit! First surgery I lost the left fallopian, second surgery left ovary! I’m not sure what I’ll lose the third time around! No idea why they don’t just whip the lot out! But then they need the patients stuck to the system so they can practice their fob off! Xx

Moon_maiden in reply to Heloo85

Well that’s a new use for Zoladex, did they mention if off licence for infection 🤣

On a more serious note are you taking probiotics? They’ll help get your gut back in order.

I’ve done some tests privately as I just didn’t want a further argument with GP’s.

I’m currently in complaint with the hospital about the crap way I’ve been treated. I will be writing a letter to CEO this week to post next week if I don’t hear back from the lady handling it. I will definitely be holding the consultant accountable 🤣 He won’t forget me in a hurry by the time I’ve finished. I thought he was ok as consultants go.

Maybe in a couple of months they’ll change their mind, worth discussing again.

Heloo85 in reply to Moon_maiden

The Zoladex is to treat the DIE growing on my ovary which is eating into the bowel, which as caused an access of infection to the ovary! To be honest, in my honest opinion, it’s just a way of putting off surgery! It would appear that anytime they have to do real work, they run for hills! Any way they can put it off, they will, and if that means waiting for an imaginary infection to go, so be it 🤣!

They are useless and I’m pretty sure this ovary has been stuck to my bowel since before the last surgery, and just left it! I was told 4 years ago, after peeling my Fallopian tube off my bowel they removed it! Now I have a brand new one on scans!? Lmfao xx

Heloo85 in reply to Moon_maiden

I am telling you now, endometriosis is only half the battle! The other half is the bloody NHS! Omg, can’t believe they set up specialist centres to take the disease seriously, to not even take it seriously! I’m seriously, at this point, thinking of sending an email to the government, cuz surely this isn’t the best way to spend taxpayers money!


Moon_maiden in reply to Heloo85

Same reason for Zoladex, DIE was seen at lap and then completely ignored by specialist as it didn’t show on MRI, yet his colleague felt it in the bowel, he put palpable in a letter to GP, not one I was cc’d in. 🤣

I fully believe they are using the injections more frequently because of covid as an excuse, going by posts they are dishing them out like sweeties.

I hope you don’t still have an infection, are you having regular blood and urine tests through GP to check?

There are some very good professionals in the NHS, but generally it’s hard to find real help, I’ve been through it helping someone else. They ended up with an amazing consultant who was on the ward at 10.30 at night, visited patients Christmas Day, etc. He was old school that actually cared.

Confronted a few consultants along the way 😂. With the one I had recently, I told him he hadn’t followed GMC guidelines in the way of keeping a patient fully informed, NICE guidelines were out the window as no notes to say he looked anywhere else for endo apart from any that got in the way removing the uterus. Not followed Eshre guidelines with what notes should be made.

I got my notes notes before making a complaint 😂, no backtracking.

GP’s are all private really, they have side business by creating scanning companies so referrals won’t always be at the hospital but still paid for by NHS. Half the services within the hospitals will be privately owned, but funded by NHS. It’s why communication is so poor and nurses get short changed half the time. Administration doesn’t look at invoices and prices with enough care so money is wasted.

Sorry rant over 😂😂

Heloo85 in reply to Moon_maiden

Rant away! We seem to be on the same battle! I had DIE show up on my MRI, first one November is was a cm, this one I just had, is 1.5cm now! But was told ‘well it’s tiny’ 🤣! Yes, I am all too aware that those scans don’t tell the whole picture! It’s nestled between my womb and bladder! Supposedly everything else was clear, but I just can’t believe a word that comes out of their mouths! I honestly can’t!

I did, for the first time, since pre-op back in 2016, had bloods taken today at gynea! No idea what they’re looking for, they never explained what for, but was 2 lots of the stuff!

The thing is, where do you turn when you are severe? The fact is, the NHS stipulates, that if we are severe we HAVE to be treated in a BSGE centre! And well, we ain’t treated!

Well today, while at clinic, I was the only patient at the hospital! His other patients received phone calls! I mean, they can’t even do much when you go in, what are they supposed to achieve over the phone!

Oh god, he pisses me off! Turns out, he now works at the private clinic I was diagnosed at, that I received really good care at and I’m like wtf, why would they employ him 🤣

The thing is, not many people are like us, and actually fall for the BS! They must not suffer like us! I’m on bloody PIP, I can barely work 4 hours a week atm, I want fixing and I actually want my life back! I want to be able to work 70 hours a week, but a house, move on, but I’m stuck between a rock and the NHS 🤣!

Had a serious nervous breakdown this time 🤣 xx

Heloo85 in reply to Moon_maiden

The ironic thing was, he told me he wouldn’t put me into early menopause because that causes more problems than it solves, then in same day, stuck me in a chemical one! This is my 5th course and I’ve not once had a bone scan 🤣! Again, against guidelines! Xx

Heloo85 in reply to Moon_maiden

I have one girl on fb recently diagnosed, via my same consultant ‘and her Endo is the worst my consultant has ever seen!’ And she’s just had surgery and been put on pill back to back and she’s like ‘oh I love him, he’s amazing’ and I can’t help but wonder why 🤣

I mean seriously... How do you end up on 3 monthly consultations, as in follow ups, as in keep a close eye, to almost die from a complication of that disease the NHS was supposed to be ‘watching’. If that doesn’t prove incompetence nothing will! 🤣 xx

Moon_maiden in reply to Heloo85

GMC guidelines state that there should be trust between dr and patient 😂

I was just starting to think I could after first lap. He came round after and although I couldn’t take much in, he said I did the best I could, he came round in the morning with photos. Explained a bit more, more fibroids, enlarged uterus, which meant he could only do so much in treating endo, could only see one ovary. He was honest, he was a very experienced Gynaecologist who used to run gynae department across all three linked hospitals.

The blood test should at the very least be looking for white cell count, kidney levels, hormone levels, plus other basics. Chances of hormones is slim as they never want to test those.

Phone calls are useless for at least half of what they’ve been used for over the last year. I know someone who had a phone appointment for diabetic eye check 🤣

Do you think if you took a list in of what they should have done but haven’t he’d be more professional? Bone scan definitely needs to be on list including the license requirements for Zoladex 😆

They are paying lip service to carry out what they’ve written down. When did they say they’d contact re results?

I want to be working properly as well, I’m doing some admin for someone, you can do some hours under permitted work with ESA, it’s not enough. I’ve told them this umpteen times, even I’d like to do what you do all day as in work.

Potentially I have a call from a GP, I’m hoping they text. After speaking to the pain nurse Monday, she said I could gradually reduce Amitriptyline and increase Pregabalin, but need to run it by GP. I’ve also asked if I can swap Tramadol for oxycodone, the consultant has said I can try it. My GP is unavailable so it’ll be someone who I’ll have to point out the consultants letter etc.

I so thought I was done with this.

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