Where is my follow up appointment?! - Endometriosis UK

Endometriosis UK

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Where is my follow up appointment?!

DM14 profile image
DM14
9 Replies

*RANT*

I had my first ever laparoscopy 3 weeks ago..and am still currently off work.

The consultant spoke to me when i woke up,but I was too out of it to remember what he said other than he cut things away and sent things off for biopsies.

Sincr sirgery day I have heard nothing from my consultant and Im all anxious/angry/worried/frustrated. Why havent i been contacted? What did they find?

I have emailed twice and phonid hs secretary twice who said- "he hasnt forgotten about you"

What else can I do?

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DM14
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9 Replies
PandoraPenguin profile image
PandoraPenguin

Seems normal from my experience. When I had my lap I was spoken to by the Dr, like you, when I was still woozy. As I came to some more a nurse went through the basics of what had been done and how to recover. She managed to get a sick note done for me as I pointed out I needed one for over 4 days at my job and no way would I get a GP appointment in that time.

I had my stitches taken out by the nurse at my GPs a week later, as per instructions, saw my GP for a further sicknote and she had got the details of the op, where they found endo, what they had removed. I saw my Consultant about 3 months after the surgery to confirm all was going well. I was then discharged as symptoms had gone away.

The only thing I am unsure of is that my remaining fallopian tube was cut. I am unclear if this was a mistake in that they started removing the wrong one or if it was cut accidentally when they were removing adhesions; I recall being told I was messy inside. I'm not fussed either way so have never pressed this issue!

DM14 profile image
DM14 in reply toPandoraPenguin

Was this nhs or private, if you dont mind me asking?

PandoraPenguin profile image
PandoraPenguin in reply toDM14

This was NHS. I was seen at one of the BSGE centres.

luthien profile image
luthien

They should send the details of your op and their findings to your GP, you could try contacting them and booking an appointment. Hopefully you'll have some insight. Definitely get details! If that helps you; I like details, I want to know what they've done to my insides!!

I recall coming round and having my specialist (also my surgeon talk to me) he then came round later on after he'd done his morning ops to talk to me about what they had done (briefly), as I was still tired, but reassured me he'd have another appointment soon. I had a follow up appointment 2 weeks after my lap with my specialist to check how recovery is and go through what they found / did. And then another 4 months later after that to discuss next steps. But I did go private, I don't know if that makes a difference. My GP hasn't had anything do with this other than referral and reading the details my specialist sends through! I had glue rather than stitches (apart from dissolving ones in belly button) so didn't need to have those removed either.

DM14 profile image
DM14 in reply toluthien

I also went private and have had 2 appointments, paid of course....

But my specialist also works in the NHS do he said he wpuld bump me up the NHS list so I dont have to pay which of course was great..

He did my surgery and now nothing...

I had dissolvable stitches so didnt need to be seen for those

luthien profile image
luthien in reply toDM14

it's the difference between private and NHS I think :(

DM14 profile image
DM14 in reply toluthien

But im still under him privatley so sutely he should be contacting me?

luthien profile image
luthien in reply toDM14

you're not paying so that's probably the difference, it'll be NHS rules that he'll be governed by, private would mean you'd have to pay as it would need to be recorded as such. I guess he's done a favour with the op but can't get away with it for the actual appointments. I have medical insurance through work so they pay but I can see that each additional appointment costs, it's not part of the operation package :(

jjeemm profile image
jjeemm

Hi DM14

Yes, the same thing happened to me. I still had a mask over my face in the recovery room when my consultant came over to tell me that the surgery had gone well, endo had been found on my bowel and I'd need further surgery. That was it.

I had no further visit from the consultant or any other doctor after the surgery.

I was told I had to stay overnight in the hospital because I was unable to pee properly. Although it was a gynae ward, none of the nurses seemed to realise that apparently it's quite common to lose some bladder function after you've had a catheter inserted during surgery and the main nurse in charge seemed to be a panic that the bladder wasn't draining properly. I was woken up several times in the night so that she could perform a bladder function test on me, when it turned out the bladder was absolutely fine!!! As you can imagine, I had no sleep at all even though I'd been up since 5am the day of the surgery because I was told to arrive at the hospital for 7.00.

When I left the hospital I was given no information at all about medication, cleaning my wounds...absolutely nothing.

A few days later I received a discharge note detailing what had been found during surgery, which consisted mostly of a list of incomprehensible acronyms, with phases like 'obliterated US ligaments', etc. When I read through it I burst into tears!!

No-one once bothered to phone me to check to see that I'd understood the discharge note and no-one bothered to see if I was okay.

About 2 weeks after the op I then received a letter from the hospital advising me that my follow-up appointment was 6 months later....not 6 weeks, 6 whole MONTHS.....this was after I'd found out that I had severe rectovaginal endo (which had taken 17 years to be diagnosed), as well as adenomyosis.

Enough said 😩!!!

If I were you, I'd definitely contact the PALS at your hospital and tell them that you'd appreciate a phone call from the consultant or one of the consultant's team to go over what happened during surgery and to tell you what's going to happen next. I found that doing this at my hospital was the only way I've ever got anywhere with anyone. Like you, I tried phoning the consultant's secretary but didn't get very far.

In the meantime, try your best not to get too stressed. I went through exactly the same emotions, feeling a mixture of bewilderment, upset, stress and anger for at least 3 months...all of which did me no good at all. What gets me even to this day is that all the upset we go through could so easily be prevented if someone could just go out of their way and make a simple phone call....

Best of luck with PALS - I'd really recommend contacting them.

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