OP

[Moon_maiden]

I have a date, yay, Feb 15, fingers crossed it doesn't get cancelled again. Mainly Colorectal surgeon with Gynae input, both experts with Endo.

[Purple_Badgers]

Woohoo! Will keep everything crossed for you🤞 Good luck!! Xxx

[Moon_maiden in reply to Purple_Badgers]

Thank you 🙂 can't believe I'm still wanting blessed operations!

How are you doing?

[Purple_Badgers in reply to Moon_maiden]

Haha! Crazy isn’t it? “Oh yes, please cut me open again!”…..I’m not great, still in limbo, waiting for an MRI then a chat with the BSGE folks. Also waiting for a second round of blood tests at the GP, as they were cancelled due to staff shortages. I have permanently raised glands and seem to be a bit anaemic, even though I religiously take my multivitamin & eat pretty well… I could do with getting some energy from somewhere… bleurgh… xxx

[Moon_maiden in reply to Purple_Badgers]

😂 it really is.

Sorry things aren’t great. Have you tried chasing up MRI, I’ve called radiology in the past and got cancellations, even organised ultrasound in one day. That was hard work though.

Limbo is hard work, I’m not sure they really understand that.

Can’t believe blood tests were cancelled, that’s ridiculous.

There’s a liquid supplement called floradex that’s friendly iron based with b vits, can be helpful at times. Magnesium is important for women especially.

I get the lack of energy, it’s odd bursts or just b mindedness of boredom getting at me 😂

🤞 that all starts to happen for you. Keep us posted, pm if you ever need a chat

[Nicjane]

Thats great news I'm happy you got an update. We are all here if you need a friendly chat. Heres to 2022!! X

[Moon_maiden in reply to Nicjane]

Thank you, just hope they find something to sort, but not too horrendous.

To 2022 🤞Let’s hope they really take this seriously for all of us, no flippancy or fobbing off.

[Bethleah]

Hi congratulations 👏 let us know how it goes wish u all the best xx

[Moon_maiden in reply to Bethleah]

Hi, thank you 🙂 will do

How’s things with you?

[Bethleah in reply to Moon_maiden]

Same unfortunately but have phone consultation with menopause team next week which will be interesting. I’m considering transferring some of my treatment to my local hospital , maybe transfer the bgse as local is now a bgse centre as it will be easier especially as I have to have scans every couple of years for the kidney and ureter as affected by Endo. I will see.

[Moon_maiden in reply to Bethleah]

Let us know how the menopause consult goes, they are starting to spring up a bit now.I’m sure you’d be able to transfer. This is my third team😂 GP can refer you over to different depts. check out consultants first so you can be sure. I usually look at private hospital info to get a rough idea.

Has Endo caused permanent damage to kidneys and ureters?

I know Endo was all over my ureters but kidneys not checked. Is there something to look out for?

[Bethleah in reply to Moon_maiden]

Thanks. I have loss of function in my left kidney as endo on left ureter. Also have a kidney stone I left side. When I came of second lot of zolodex after 5 months ( I couldn’t take any more) my period hit 3 months later and I was in by agony. I spent a night in hospital because of the kidney. Everything swelled up and raised kidney concerns.

[Moon_maiden in reply to Bethleah]

It’s not good that they’ve caused dangerous levels for you. At least you know what to keep an eye on. Not much of a help when we know it shouldn’t happen. Do they have a prognosis for long term? I know we can survive with one.

I wish I’d stopped it earlier, I kept to the six months just in case.

I’ve kept my own eye on kidneys, levels were fluctuating, no one was concerned. They’ve levelled at low normal since hysterectomy.

I don’t think current team were impressed by last op, that ureters were covered but he didn’t go higher than pelvis. Gynae was talking about stents and other stuff that hadn’t been done. I’m intrigued by what they will or won’t find.

[Bethleah in reply to Moon_maiden]

I don’t think the zolodex caused it but the first period after coming off it was after 3 months of no meds to suppress the endo. I have scans every 2 years for now to monitor it . It’s been stable since which is why they are every 2 years instead on 1. I had a stent for 6 months and it was pure agony and peeing blood. It was like sitting on a coat hanger. They also put the longer stent in which was clever as I’m under 5ft. 🤦‍♀️Apparently they only have 2 sizes of ureter stents.

[Moon_maiden in reply to Bethleah]

You’ve really been through it, sounds horrible. I’m trying to imagine it, which I can sort off but reality is always different. Only two sizes, that’s not good, people are more varied than that. Honesty you’d think there’d be some common sense these days.

I hope they don’t do that during op. If they did last Gynae will be up the proverbial creek without a paddle 😂

[Bethleah in reply to Moon_maiden]

You’ve had it worse then me. A lot of it is because it’s all geared towards men. If more women were in the top jobs and involved in research and trials then this gs may be very different. The nhs has a culture of covering their backs too and they lie to save themselves which makes it worse for patients especially women. Good luck

[Moon_maiden in reply to Bethleah]

Don’t they just, it’s ridiculous at times.I think it’s changing with jobs in some ways, the research team at Edinburgh has a woman involved I think as joint lead. It’s something and they’ve made the most recent breakthroughs, 🤞

Have you had an ok day?

[Bethleah in reply to Moon_maiden]

Symptoms flaring up a bit especially at night so between hot flushes, peeing and pain I’m struggling with the fatigue and wooziness amongst others. 🤦‍♀️ How about you? At Oxford there was a woman on the team who only did the most complex surgeries. Great but there was a severe lack of people skills by her. She stated In a letter I didn’t want more surgery. This wasn’t the case as she didn’t want to operate and I agreed if that was the best option. She had emphasised it was me who made the decision which was u untrue. Also she left it until a week before I was due for surgery to see me and tell me no surgery. Mid December too. Not all women are more understanding then men. The nhs could do with overhauling their training and recruitment processes as just because you are clever doesn’t make you a good doctor. They also need more focus on womens health issues during training we do make up at least 50% of the population. Yet we are still ignored or worse.

[Moon_maiden in reply to Bethleah]

I can fully empathise with your symptoms, apart from hot flushes, they happen with food sometimes. It’s not good. They have a habit of doing that, putting it as your decision when it’s not. You trust they are being honest, but they avoid this, but it’s not their body they ate potentially screwing up.

If you switch hospitals will you go for more surgery?

The only women Gynae I’ve met was department head at a complaints meeting. She seemed nice, no idea as an actual consultant.

I’d like to think I’ve made a difference at my GP surgery, they still have the poster up that I printed from the UK Endo website. They had an area of wall for woman’s health, it was just about breast and ovarian cancer!

Once they don’t have covid hanging over they might put the folder of other print outs for women to look at.

[Bethleah in reply to Moon_maiden]

No more surgery as it’s too complex and won’t help main symptoms but likely to affect mobility further. Not sure about switching I’m going to talk to gp and see what next scan shows. It may cause more issues to just transfer for the urology but stay with Oxford bgse foe endo and menopause. May have to transfer completely so only dealing with 1 nhs trust. Local not got good reviews but then the John Radcliffe didn’t to any better on inspection. Good idea about the poster. My gp is good Ive given her newspaper articles on endo and the nice guidelines. She’s great but rare to find a good gp. She’s the only good 1 I’ve ever had.

[Moon_maiden in reply to Bethleah]

I can understand how you feel about surgery, you’ve a lot going on with keeping things in check.Oxford is supposed to have a good rep, things go wrong with this too often.

It’s hard dealing with two hospitals, although communication’s within one aren’t great at times. Just as bad looking at histories as GP’s 🤦‍♀️

There is a new menopause drug on the market, not on the NHS yet, depending on how surgery goes might try it.

Mine isn’t too bad at times, he did the referrals when needed. On bad days they’ve no idea what to do and comes across that your making it up. I don’t trust them anymore.

It’s good she’s on your side, a keeper 🙂

[EndoJaz]

Hope this sorts things once and for all, I still never heard back after my failed colonoscopy about the bowel twisting but I’m sure it’s causing lots of my pains, I have gynaecology appt next week and gonna try to see if I can go on the list for sorting my prolapse as physio has now said can’t really help. It’s all such a mess. Don’t know what to deal with first. Keep us posted and we’ll done for fighting for this, we all know what a battle that is alone xx

[Moon_maiden in reply to EndoJaz]

Hi, thank you, I really hope so.You’ll have to chase them up, to get things moving you need to at times.

When you see Gynae bring colon stuff into the discussion and possibility of Endo there and what they plan to do about it. We have to be careful we word things the right way for getting an answer, has to be direct. I thought I had been but they skirted around.

GMC so far have sided with them but I’ve asked what info was supplied by the hospital. I don’t think anyone has questioned their decision as the person I’ve dealt with had to go ask about me raising an appeal 😂 they do if fresh evidence. See what op brings.

Let us know how appointment goes 🙂

the more we ask difficult questions the more the have to wake up to this century 🤣

[EndoJaz in reply to Moon_maiden]

Hi, had my appt yesterday and went in armed with my list, he suggests I go on progesterone only pill for cycle pains and pelvic pain clinic. Also have to be referred thru GP again for colorectal help. He’s put me on the list for prolapse repair with a year wait. Scared so don’t mind waiting 😆How r u doing? All prepared for big day? X

[Moon_maiden in reply to EndoJaz]

Sounds like you’ve achieved something, 🙂 how do you feel about the meds? Have you tried it before?Wonder how the pelvic pain clinic will help.

Gynae could have referred you to colorectal internally, that he didn’t just comes back to who the funding comes from.

A long wait, understand you being cautious, I want it but petrified in the same breathe 😂

I had an admissions letter yesterday, no mention of taking bowel prep and first thoughts reading it just smacked of just a diagnostic surgery which wasn’t what I’ve signed up for. Spoke to sec yesterday and she’ll ask consultant about bowel prep.

[EndoJaz in reply to Moon_maiden]

Well I have been told the injections are the best way to go to shut ovaries off but side effects scare me so a pill not too bad cos can always stop if needed not like jab when it’s in there’s no going back. My ovary mass had stayed same size so not too worried about that. Have to deal with one thing at a time don’t we. Yes make sure you and surgeon are on the same page. It’s terrible how we have to keep fighting, it’s tiring x

[Moon_maiden in reply to EndoJaz]

Zoladex didn’t agree with me, I tried them as I was desperate and could say I’d tried. At the new hospital the Dr I had an appointment with, not consultant, said they might ask me to go back on it. I think he got the gist 😂Worth trying the pill and seeing if it helps. The things we go through when they really have no clue anyway. Some are very good sales persons 🤣

So sick of the fighting, just something simple. 🤔maybe it’s all wishful thinking on our part

[Pureunicorn]

Hi Moon_maiden, That's great news 🥳 fingers and toes all crossed for ya 🤞 hope it all goes well, keep us updated xx

[Moon_maiden in reply to Pureunicorn]

Hi, thank you, will do. 🤞

How’s it going with you? Anything exciting for the weekend?

[Pureunicorn]

Not been the best week! GP wouldnt do my decapeptyl injection 2 weeks ago as my son had covid, they wouldnt let me in 😷🤬 I really dont understand it if I'm following the guidelines, what's the point in guidelines 🙄!! So now have to wait till the 8th as had no other appointments 😒 . Lots of rest before bk to work Monday 😁 or more like lots of housework n food shopping with the odd argument between the kids 🤣. Good luck and cant wait to read how it all went 🤞 xx

[Moon_maiden in reply to Pureunicorn]

That’s not good, I don’t think the people in the system have a clue what to do. 🤦‍♀️ I thought it was important to keep those regular time wise. That was my impression when I had them. Your son didn’t feel too unwell?

😂 hopefully not too many arguments. Can you distract them with making something, offer a prize for the best one, keep them going as long as possible, or cleaning 🤣 or headphones and a film, for you that is.

Thank you, still scary though 🤦‍♀️