I could cry! Op to remove endo is now more likely to be May than April :-(

[Cat247]

I've been suffering so much with pain for so long and it's been especially bad since my Lap in November when they diagnosed severe endo. I've been working so hard at staying positive and just focusing on getting to my op which I was told would be mid April. I phone the hospital today to see if there is a date yet and I'm told they are running behind so more likely to be May now. I just feel so deflated, I've been off work since the end of jan, I really can't stay off for the whole of April so I'll have to try and get back on reduced hours or something. I hate the way Endo controls my life and the way we are just a number to the NHS not a person who is unwell.

[Smudger_79]

ahhh hun..there's nothing worse than cancelled ops!! Had it done to me many times. You build yourself up for nothing so i can empathise with the deflated feeling. Unfortunately it happens a lot. This is why endo should be more spoke about and how devastating it can be on women's lives. Really drives me mad how it's not more understood and people who dont suffer really need to take time to reasearch how bloomin painful it is.

I can only offer a virtual hug and say dont be too downhearted...pick yourself up after a good cry and try remain positive. May is not too far away hun (feels like it when you are suffering i know). xxx

[Cat247 in reply to Smudger_79]

Thank you really appreciate your message. I have emailed my surgeon just to let him know how bad things have been, so even if nothing comes of it I feel a bit better for doing it. It really is soooo frustrating.xx

[Hidden in reply to Cat247]

Maybe your GP could also call or write to the hospital and explain that your pain is now so severe you have been signed off work?

[Cat247 in reply to Hidden]

Yeah barb I think I will speak to my GP on Monday. Im still signed off next week but I'm going to have to go back to work after that on reduced hours I think, I can't really stay off the whole of April. I'll just have to try and manage but if get a really bad day not go in and see about making time up another day. It's not ideal but no choice really. Don't want to use up all my full sick pay and then be on statutory pay when it comes to the op.xx

[Hidden in reply to Cat247]

I think it's worthwhile asking your GP to hurry up your op for you. (What are you having done?)

When I needed major surgery on my shoulder, my GP wrote to the consultant and explained how much pain I was in. My case went from routine to urgent and my surgery was done a few weeks later,

Good luck x

[Cat247 in reply to Hidden]

It's worth a try but It sounds like I am basically next on the list anyway. The reason it's taking so long is because I need the endo surgeon and a bowel surgeon to operate at the same time. As they are both so busy in different fields and I think the bowel surgeon doesn't just cover my hospital, it is a case of them having a free date at the same time. IfI just needed the endo surgeon alone I probably would have had the op already.

The op is to remove endo and free up my organs, i have severe endo and everything is really stuck together. I am so desperate to try for a baby aswell, so just want to get on with it now.

Hope you are not suffering too much at the minute.xx

[Hidden in reply to Cat247]

Sounds like you are in good hands..... It's just so frustrating waiting!

My bits are all stuck together but thankfully I've had my children. I also have adenomyosis.

Good luck with your surgery and your future baby making x

[Cat247 in reply to Hidden]

Thank you.

Do they just leave you as you are then because you've had children? Or do you have any surgery in the pipeline?

[Hidden]

I had an MRI in December and that found things stuck together! I've also got Endo in my POD, ligaments and a leaking cyst on my right ovary.

As I have adenomyosis I thought it would be best to have my womb removed and to get Endo removed and things unstuck. But the hospital doctor wants me to go on GNRH, but I don't want to.

The specialist said I will risk damage to my bowel if they operate!

I'm going to see my GP in a few weeks and I will ask her if I should get a second opinion.

I've also got to have a camera up my bum in April to check that the Endo hasn't penetrated the bowel!

After 20+ years of Endo..... I've had enough. I'm struggling to work, sleep and really enjoy life. I'm 43 and so pleased I've got my babies.

X

[Cat247 in reply to Hidden]

Oh poor you, it sucks doesn't it. I need the bowel surgeon as endo is on the bowel and bowel stuck to other stuff. They have said if its gone inside the bowel they will need to remove a section and i will need a temporary bag. I am on GNRH and hate to say I have nothing good to say about it

Its great you have your babies. I have a 4 year old boy so I am so greatful for him, but I am only 30 and would love 1 more baby to complete our family.

Bet you are not looking forward to the camera!! I'm with you on struggling to work, sleep & enjoy life, I wish there was a magic pill.

I don't really know anything about adenomyosis but knowing my luck i'll get it!xx

[Hidden in reply to Cat247]

Oh bless you.... You are having a hard time. I'm pleased you've got a special little boy. Hopefully after your op is done a little brother or sister will be on their way.

Adenomyosis is a bugger. It's where endometrial cells grow into the muscular wall of the uterus. For me it causes severe cramping, back pain and torrential periods. Thankfully my periods have been lighter since having the mirena.

Fatigue is a real issue for me! Do you suffer?

X

[Cat247 in reply to Hidden]

Oh crikey that on top of endo must be a nightmare for you. I get horrendous lower back/pelvic pain. Not having periods at the minute thank god as they were awful.

Yeah fatigue is a big thing I really struggle with, I'm sure some people think I am lazy but I am sometimes just so tired and worn out.Pain is so tiring. The sun being out the last week has helped a bit in perking me up.x

[Jolene2905]

Hi

I had a bowel resection in November for Endo and most of the pain has gone now, I stupidly thought it would be similar to my previous 5 ops for endo but no where near, give yourself plenty if recovery time, I had three months of work and it is still niggly nice, where are you having your op? On a really positive note I wax gobsmacked to find out recently I am pregnant so fingers crossed for you too x

[Cat247 in reply to Jolene2905]

Aww congratulations that is wonderful you are pregnant so soon after your op. Makes me feel like there is hope. Thanks for advice too, fingers crossed I won't need a bowel resection but if I do I will definately take it easy afterwards. Do you mind me asking, did you have to have a bag? If so how big is it? And how long do you have it for? It really is so lovely to hear that someone who has been through what many of us are going through has got pregnant.xx

[Jolene2905]

Hi, no I didn't have a bag, I met the stoma nurses twice and went through the procedure and had myself marked up with permanent pen in case the docs needed to do it, I was in hospital for 6 days and was on a morphine drip for most of it and then liquid morphine when I came home, it was a shock to the system after other ops, took about 5 days to go to the loo and it was very weird when I did, but all fine, I had my op done at the Churchill hospital in Oxford by a bowel surgeon who had an endo surgeon to assist, where abouts will you go if you have it done? My whole endo pain of going to the the loo etc has gone and i was absolutely gob smacked to find I am pregnant, only 6 weeks at the mo but still an utter surprise xx

[Cat247]

Aww that's good you didn't have a bag. I'm in Plymouth so will be different surgeons. Sorry I'm probably being really thick but is what I'm having called a bowel re-section? Basically my bowel, bladder, ovaries, uterus etc.. Are all stuck down together. I'm not hugely informed on what I'm having done.xx

[hayls in reply to Cat247]

Hi

I recently had very similar surgery in Plymouth with endo Gynae and endo specialist bowel surgeon, I had my surgery privately at the Nuffield but same surgeons as at the Nhs endo clinic across the road at derriford - if its any comfort it was a mission getting a theatre time where they were both available at the same time, was about 8 week wait and that was private (ive only waited max 2 weeks privately before). If you've got any questions I might be able to help as I would guess its the same surgeons and very similar op by the sounds of it, so feel free to message me x

[Cat247]

Hi Hayls thanks for letting me know, it's always good to hear from somebody using the same hospital. Wow 8 weeks! Wish I'd gone private. By the time we get to May I will have waited 6 months I will message you tomorrow for a chat if that's ok.xx

[Mia26]

Hi,

I'm so sorry that's happened to you!

I went through a similar thing, I had to wait about 20 weeks just for my gyno appointment, in which time the pain got progressively worse. When I had the gyno app they said my operation would be the end of November. I had three pre-op appointments changed and when I finally got there, I was told my op was going to be the end of December.

The NHS do seem very blank to what a person might be going through, the pain that is been endured every single day, and what it does to someone when dates are changed. Its quite crushing.

I'd suggest going back to your GP maybe, explaining what has happened, and seeing if they can prescribe you anything different to get your through the rest of the time you now have to wait.

Have you got a good support network close to you, and good plans for Christmas? Could that maybe help in the short-term?

x