Cancelled surgery

[salendo1403_]

I was due to have my second surgery on the 4th March, I arrived to be told it was cancelled because the surgeon didn’t work on Fridays. I was then told it was because my ecg was abnormal, I went to see a private cardiologist and my ecg was normal. I haven’t heard anything since and the pain is unbearable, I keep being told “we’ll pass on this information” and I am tired. It has been dealt with so unprofessionally.

[Brambledoggy]

I’m so sorry. It’s just not easy at all and you know when you’re turning to strangers on the internet for advice that a) the help we all need ain’t out there and b) no one seems to be available or listening. I’m just saying I AM! Cancelled surgery seems to be normal these days. All I can advise is keep pushing, keep slogging away to be heard, try and stay strong and if I can help further I will try. If you have severe endometriosis pain, I found from my own long, shitty experience that TENS machines can help and in particular one called a Livia Device which targets the pelvis. And despite all the vast array of pain relief, good old paracetamol together with nurofen (go steady) worked for me. I hope you get some relief soon. Nina.

[logit]

Have you contacted PALs? Explain to them what has happened and they will investigate/speak to the department.

[Endo_Jaded]

I’m sadly in the same position; my surgeon cancelled my surgery because he didn’t work after 11:30am and I had a swollen leg from the Endo pain.

The pain is horrifying - at least for me and others. I find that paracetamol and ibuprofen are totally crap for treating the level of pain associated with severe endometriosis. I’m on Reletrans Transdermal Patch nearly at top patch, still need codeine for breakthrough pain and now I’ve been put on Gabapetin for nerve pain from buttock to foot.

Firstly, write a complaint to the health board covering your area - usually pals.

Secondly, contact a solicitor and speak with them regarding your medico legal case and treatment.

Thirdly, pay for a private MRI and get this report. For every year you wait repeat the MRI.

I’ve been left since 2017 - even though my Junior surgeon tried to operate in 2019 he removed nothing and literally closed me up within 33 mins. He did this because he was incompetent and misread my CT; refused a pre surgery MRI and thought the stage 4 Endo wouldn’t have gotten worse in 3 years after 20.. I’m not still waiting!

Your journey is your journey and sadly in my experience you will come up against some women with endometriosis who will make it their mission to dismiss your pain, your complaints, issues or pleas and even your request for support. Ignore them and do not allow them to infect your emotions!!

You deserve high standards of care and treatment and clearly you’ve been let down!

If you are in a significant amount of pain I would request stronger pain relief especially if you require if often. You could also request Synarel which places you in chemical menopause and is far superior to Lupron or Prostap - both of which are one and the same and have many legal cases against them from endo patients; as well as cancer patients and trans patients too. Again, this is your choice so don’t be bullied into something. Many medical professionals push Lupron/Prostap and it’s not because of treatment but financial gain.

Feel free to DM and anytime and I’ll try and help where I can.

Love

J

[BloomingMarvellous]

So sorry you’ve had to go through this. Go through Pals, put it in writing. Don’t put up with the delay . Ask for a copy of the abnormal trace. Deliver the results of your private one to their desk in person ( or an advocate on your behalf) take a photo of the delivery. Give them a time line to respond. Copy in their PA. Copy in your GP. Unless you say or do something it will get queued.