Cancelled surgery

[stacylee78]

Hi all.. Ok so my excision surgery for end of August has just been cancelled, I am also on the priority list. I’m so upset & have had no advice or support 😫

Has anyone actually had surgery since COVID-19?? I’m wondering how they can cancel my surgery date for August?! I’m also wondering if I should go somewhere else? All I’ve done is chase appointments etc it’s been so stressful. I’m also having triptoryline injection to shrink endo & on HRT, if honest I hate how it’s affecting me but can I talk to any professionals for support, no!

[Romano1234]

How is it affecting you? Just out of curiosity as it’s something the doctors suggested for me.

[stacylee78 in reply to Romano1234]

It’s hard to say exactly but I know my body isn’t liking it. I feel it’s lowered my immune system, put on a lot of weight and it hasn’t helped me much with pain. I’m even more sensitive to foods than before.. I think it’s different for everyone in terms of affect. My moods are up & down but I have suffered a loss so grief also does that.

[Moon_maiden]

Try calling the consultants secretary, they should give you a reason why. If not forthcoming ask GP to message the consultant, they can do this through the system.

It could just be down to having the injection and they are hoping this will stop symptoms and endo. That’s the main reason I’m on Zoladex

[Linley]

If you, are on a priority list you need to phone and find out why it's been cancelled. Don't forget the Government have done a deal with the private sector to get things moving

[stacylee78]

I’ve called all they can say is that no surgeries are being done yet. It’s a joke that I have to chase like this to get answers. I have spoke to gp let’s see what answers she gets.

[Linley in reply to stacylee78]

🤞

[EndoEffect]

Hi stacylee. So sorry you’re going through this. I don’t have any surgeries scheduled, but like you, I keep having to chase appointments. I was given a telephone appointment in June, after months of waiting, and nobody rang me. They apologised and rebooked me an appointment for yesterday, a month later, and again, nobody rang me. So frustrated, angry and upset. I hope you get answers and support soon. X

[stacylee78 in reply to EndoEffect]

It’s all so frustrating xxx

[Bailey1981]

Was your surgery NHS or private x

[stacylee78 in reply to Bailey1981]

NHS

[Thecrazypugglelady]

I'm in the same boat as yourself got told nothing would change just a slight longer wait etc etc to find there is no clinic/surgery at all and no intention of starting anytime soon in Wales so there is no list which is highly frustrating but also life changing understandably this virus is deadly but urology are starting back up I've recieved a phone call to confirm where I am on the list and everything! so why aren't gynaecology!!! This means that we all suffer immensely from potentially life changing surgery! Dont get me started it annoys me aswell because there are loads of empty unused field hospitals by me! I'm so angry but weve got to stay strong I highly recommend getting in touch with your gp say your in immence pain and you need a referral to gynaecology team thats what I've done now I'm just praying 🤞I'm refusing to have anymore injections that dont work and living off opioids that cause more bowel problems! I'm hoping they sort us all out and not like 4 years down the line when we've already been waiting like 7 years to be believed it's a joke! Cant have surgery that may help daily pain but you can have you hair and nails done ... rant over hahaha

[stacylee78 in reply to Thecrazypugglelady]

Oh my gosh it’s so frustrating, thank you for sharing. I feel less alone now xx

[Thecrazypugglelady in reply to stacylee78]

Please get in touch with your gp though and let us know how you get on 🤞 they sort it out

[stacylee78 in reply to Thecrazypugglelady]

Already done this! That’s how I was put on the priority list...

[Thecrazypugglelady in reply to stacylee78]

And theyve still cancelled! omg I feel a petition coming on!

[stacylee78 in reply to Thecrazypugglelady]

I’m supposed to get a call Monday from nurse. Let’s see what happens x

[Thecrazypugglelady in reply to stacylee78]

🤞

[Hannah995]

Hi Stacy

It’s likely that they are very behind now on surgeries due to COVID-19. Lots of services were closed during this time which will mean there is a back log. I know this doesn’t help you and I know how awful it is waiting when you just want some help. I’ve suffered with endo and fibroids for my teens and 20s. I got little help so I doubt moving will help. Also your local area will only have a few options and you could be waiting longer. I sadly had a hysterectomy last year 28yrs old. It was hard but my quality of life is so much better. I wish women had more support for gynae problems there’s a lot of throw you on this pill oh and have the coil! Drove me mad! Just keep shouting you have too to be heard I had a very long road till the final destination where I actually felt like I was listened too! Here if you need any support. Xx

[stacylee78 in reply to Hannah995]

Thank you 💜

[Romano1234 in reply to Hannah995]

Do you feel better since hysterectomy?

[stacylee78 in reply to Romano1234]

I haven’t had a hysterectomy.

[Romano1234 in reply to Romano1234]

Sorry meant Hannah...just wondering if it is the better option.

[Hannah995 in reply to Romano1234]

I do it’s literally changed my life. I no longer worry about embarrassing bleeding moments or have to deal with all the pain I had. Don’t get me wrong it was not a easy decision and I don’t have any children but my quality of life mattered more to me.

[Lucie2015]

Hi,

If you ring your GP next week you could ask them to write to the consultant explaining how the endo is affecting you etc. You should be given priority if you are on an urgent list. If you don’t get anywhere with that then try ringing PALS at the hospital for more information/to complain as they can contact the department directly x

[AliBeth]

Is there a GP you trust to go through your concerns and perhaps try contacting your surgeons secretary and express your worries with them. Personally I found the hormone side effects outweighed the benefits. I have just had my Endo excision plus ooverectomy and hysterectomy and the support offered was awful both sides. If you have the energy keep asking questions. Take care . 💛

[PaoPetite]

I am really sorry to hear that!

I can imagine the frustration before Covid we Endo suffers had to wait for a long time to even get seen by the gynaecologist I can only understand the pain and frustration you feeling at the moment, that’s why I decided to move abroad for a little while until I find a better treatment, I have been here in Germany for half year and I have been seen by the gynaecologist as soon as I arrived, I have had more ultrasounds in 4 months that I ever had in the uk 🇬🇧, I was admitted to hospital 3 weeks ago because Endo returned and within hours of arriving by to the woman’s clinic within the hospital I was admitted and 5 days later I had my operation, this is the 7th operation. I was operated by an Endo specialist she found my Fallopian tube had a distortion and an endometrioma 4cm big and adherations in my rectum, I am 100% sure if that would have been the case back in London they wouldn’t have even see me and send me back home with pain killers prescription! I find this utterly unacceptable! Women with Endo need to be heard! This is not fair, we are suffering so much and nothing much is being done!!! How many women must have such deep infiltrated endometriosis with endometriomas, cysts adherents, fibroids and the list goes on! Having this fibroids inside is painful, having cysts is painful! The medical system needs to change... I am so sad and sorry for all my Endo sisters 👯‍♀️ we struggle and nothing much has changed. 🥺☹️

[stacylee78 in reply to PaoPetite]

Yes yes yes! Thank you 💜