Any advice on how to speed up surgery

[Skyhigh20]

Hi everyone hope your keeping well. I’ve been diagnosed with stage 4 endometriosis which is around my bowel and other areas of my Pelvis. I’ve been advised I have to now wait another year for surgery. I was on Prostap but have stopped taking it due to side affects and now they want me to go on noristherone. The pain is slowly returning again please can anyone advise what I can do I can’t afford to go private and I’m mentally exhausted by it all.

Thank you

[Pixie_Pumpin35]

Hello skyhigh,

Who has told you that you have to wait a year for surgery and why? Were you diagnosed at a BSGE Centre? What pain medication are you currently taking?

Pixie 💛

[Skyhigh20 in reply to Pixie_Pumpin35]

Hi Pixie_Pumpin35

Thank you for replying I appreciate your time. I’ve already waited 2 years when I was originally told about my diagnosis I realised too late on on in the process that they were not a BSGE centre and to be honest I didn’t know about this until I joined this group which I’m so grateful for. My doctor referred me to the BSGE centre and I had another MRI as the last one was over a year ago. They have advised it will take a year due to Covid delaying surgeries and there is now a backlog. I was on Prostap but have now stopped that due to side affects and now they want me to go on noristherone which again I’m dreading because of the possible side affects.

[Kris_23 in reply to Pixie_Pumpin35]

Hi always thank to everyone who shares their life experience of going through this.

Pixie I would like to ask ? How do one get in touch with BSGE centres pls ?? I have looked on website but it does not give information of how to refer yourself to them ? Thank you 😊 x

[Skyhigh20 in reply to Kris_23]

Hi Kris-23

This is a link to the NICE guidelines. Referral is via GP. Although NICE have published the guidelines Unfortunately GP’s often don’t implement the guidance so ask them to refer to guidelines. Good luck x

[Kris_23 in reply to Skyhigh20]

Thank for your reply Skyghigh20 ❤️

I will look into this x

Sometimes knocking on doors for help it’s so annoying and difficult to make GPs or Consultant to listen to you or make them understand the dilemma of this symptoms which we live with.

[Skyhigh20 in reply to Kris_23]

I know it’s not easy but don’t give up just keeping pushing don’t let them fob you off it’s your health that will be impacted in your daily life.

[Skyhigh20 in reply to Kris_23]

nice.org.uk/guidance/ng73/r...

Sorry here the link

[TennisAM]

Hi Skyhigh,

I'm sorry to hear that and totally understand as I've had bowel endometriosis myself and am stage IV. The pain can be really hard to handle so please be kind to yourself and rest when needed.

Are you being treated by a bsge endometriosis centre? Have you been referred to a colorectal surgeon (preferably the one named on the bsge centre website for your hospital)?

I am at a BSGE centre and have been told its a year's wait because of the backlog.

I have multiple suggestions:

1. Speed up surgery:

- I would find out who books the surgeries and call them. Avoid a Monday and also any time before 11am. Let them have a tea and biscuits then call after 11.15. We want them in a good mood when you try this 😊. Build rapport, ask them how they are, etc etc. You'd be surprised that most patients skip past the pleasantries. Thats a massive mistake, sadly as most skip past the pleasantries they will not be remembered and valued. It doesn't take much to stand out because a lot of NHS staff are treated badly. If you are comfortable, once you've built a bit of rapport I would explain to the person how your condition is affecting you (stabbing pain, can't sleep, affecting work etc etc). Its important to remember there's easier (and better paid) admin jobs out there yet the person chose to work for the NHS. There will be a reason for this, they probably care, want to help etc. I would then say "I'd be really grateful if you could think of me if a cancellation comes up, I'm very flexible and available at short notice". See what they say and then ask "do you mind if I call you every few weeks to see if any cancellations come up." I'm sure they won't say no.

- I'm told you can accept a surgery slot with another consultant at the hospital. Sometimes if a slot comes up it can be offered to you. Think carefully about this as your situation sounds complicated. Also important to ensure they are one of the endometriosis specialists.

2. Pain management/solutions in the interim

Have you tried acupuncture and Chinese medicine? I've found it very effective for endometriosis symptoms and treatment.

Happy to discuss the above via private message and also all the alternative natural products that help me. Can't post here as Endo UK don't like links to other websites posted.

Feel free to send me a private message as everything alternative I've found has been very helpful to reduce pain and inflammation.

Best wishes

[Skyhigh20 in reply to TennisAM]

Hi roshsp2012

Thank you so much for your advice this has given me the push I needed I was feeling so low this weekend thinking about how I’m going to get through another year. I have been told about acupuncture I’ll give anything drug free a go as I’m tired of taking pills.

[TennisAM in reply to Skyhigh20]

I'm glad and happy to tell you about the other things that have worked if you want to send me a private message. Remember you're not alone. Many of us are going through the same or similar x

[Moon_maiden]

At one point a couple of months back I looked into a different hospital waiting list, I was told it could be a year. I did speak to the secretary of the consultant a few times, she was really helpful and I said available anytime and had surgery end of last month. They may just have been sick of me by then 😆, but I couldn’t have gone on much longer.

As has been said there will be cancellations and some won’t want to go because of covid concerns.

🤞 for you that you get somewhere very soon. If you were due surgery before covid you should be higher up on the list. Don’t speak to appointments or general admin, make sure it’s someone that can really help.

[Skyhigh20 in reply to Moon_maiden]

Hi Moon_maiden

Thanks for the tips I’m writing an email to the secretary now hoping she will be able to help me. 👍

[Moon_maiden in reply to Skyhigh20]

🤞, let us know how you get on?

[Brighton-Redhead]

Hello. I have endo in my bowel which i am managing with hormones. I have a large nodule the size of a tomato in a place which would cause complications so I don’t want to risk surgery. The good news is I have been managing the pain now for 6 years. I take provera which stops my periods and is meant to slow the growth of nodules. I would recommend it. I do not recommend the other drug noresterone or however you spell it. That drug made me depressed. Provera is much better

[Skyhigh20 in reply to Brighton-Redhead]

Hi Brighton-Redhead

Thanks for your reply. I’ve not heard of Provera. This was the only option they gave me I wasn’t told about any other treatment.

[Brighton-Redhead in reply to Skyhigh20]

Provera is quite a standard treatment you should ask your doctor about it. I really did not like the other drug. Provera works well for me and I have avoided surgery which is good