Concerned with letter from surgeon

[Elephy]

Hi

I had a laparoscopy on Thursday and received a letter today from the surgeon who carried out the procedure .

On the letter the diagnosis says - superficial endometriosis on the left uterosacral ligament otherwise normal pelvis.. it also says there was no evidence of any other endometriosis but he told me on the day of the surgery there was endo found in 2 areas, one which he burned away (which was the uterosacral ligament) and the other area he was unable to burn it as it was on or near blood vessels. I can't remember where the other area was as I was not with it due to the anesthesia and pain killers.

I am really worried and concerned that he has not put this crucial information in the letter.

What should I do? I have no contact information and they dont appear to answer the phone on the ward.

He also kind of annoyed me as he came across almost like 'oh there's barely anything its just a small bit'. You have no idea the pain I've had to ensure for years so please don't downplay my pain like it is nothing.

Please any advice would be appreciated as I am very worried

Thank you!

[MewMauw]

Does the letter say about next steps at all? Like, what the next steps for what was found on the left uterosacral ligament is?

I think if the letter doesn't give any next steps/contact info, I would sit down with GP and check what they can see on the system. Sometimes, at least in my case a lot of comms went on between surgeon-specialist-GP that I was not privy to. So maybe hopefully GP can give some reassurance about next steps and if not, at least follow this up for you?

I believe GPs have some sort of direct line to local hospital surgeons, so do the specialists in the hospital...

[MewMauw in reply to MewMauw]

I have not had the surgery yet btw, but I have seen the GP as well as specialists call the surgeons directly (to discuss pre-surgery issues) so I am guessing they should have direct line for post-surgery too?

[Elephy in reply to MewMauw]

The endo on the uterosacral ligament was treated with diathermy. It says in the letter "I have not arranged any routine follow-up for you" but I have an app with a gynecologist on the 16th so hoping to have all my questions answered then. I remember he showed me photos of the endometriosis that was around the blood vessels so at least I know there will be evidence somewhere.

[MewMauw in reply to Elephy]

Ah, in that case I also have gut feeling your Gyneac will know more and your Qs will be answered on 16th! Take care Xx

[Pray4health]

Hi Sorry to hear about your experience. I find mamy consultant letters miss out of crucial information that was discussed and often information is vague, perhaps to cover themself up for various reasons. Contact your surgery and ask them for contact details, or ask to add this information on your behalf?

[gettingusedtoendo]

Oh the amount of inaccuracies in hospital letters. It’s beyond frustrating when it relates to your everyday experience that you know so well. I was took a letter in to my consultation annotated with corrections! It’s important. I hope you are able to contact someone

[Ronsk]

Hi

I've been in the same position several times with unanswered questions. I normally call my consultants secretary and ask them to get my consultant to phone me. Good luck.

[Lilmuzza]

Hi there, you should be able to find the name and contact details online for his secretary. Good luck and get them to update the letter xxx

[Elephy]

Hi everyone I managed to get the surgeons secretary's number and have left a voicemail so hopefully this will get sorted soon.

[eunha]

So sorry you felt like your pain was downplayed 😣 Theres a lot of insensitive doctors out there, some overworked, some just jerks. I've cried on many appointments. But we know your pain is real! I hope you get answers and start feeling better 💕

[Helena45]

Please don't be too upset about the surgeon's comments - the reference to small areas relates to physical size and spread of the endometriosis and is not a reflection on degree of pain it causes - pain is subjective and his investigations are objective findings. The reports are dictated at the end of the surgical sessions and bits of information are sometimes omitted due to sheer volume of patients being seen in a day and only pertinent findings being disseminated. The full details are always recorded on the theatre notes and photographs so you can trace them through your hospital records (Contact PALS if needed) and not the correspondence letters sent to your GP.

Hope you get your answers at your appointment.

[Elephy in reply to Helena45]

I spoke to the surgeons secretary, should get a call back tomorrow from the surgeon herself but she confirmed there was nothing on record about this. Hopefully get answers tomorrow.

PALS is only available in England.

Thanks

[Helena45]

Sorry didn't think that you wouldn't have an equivalent Patient Liaison service - hope you can get more information when you speak with your surgeon. 🙂

[Elephy]

Still haven't recieved a call back yet, was told by the secretary I would be phoned a few days ago and I've left another 2 voicemail. Still nothing 😒

[Elephy]

Update -

So I got a call back yesterday and the surgeon told me that there has definitely not been any endometriosis left and she burnt away the bit that was found. Find it weird the registrar told me there was a patch they couldn't get due to blood vessels but I suppose I have heard it from the horses mouth I should just forget about it.