Laparoscopy yesterday, no diagnosis, don’t know what to do?!

[04gddness8]

As I came round from my general anaesthetic laparoscopy yesterday my gynaecology consultant put photo on my Bed and told me it showed my “pristine uterus”

Previously he told me it was a higher than 50% chance he wouldn’t find anything and that the next step is hysterectomy.

But I have no diagnosis. I feel a bit desperate and very disappointed. I have the symptoms of Endo but no one can find it.

So what do I do now?

[luthien]

Ah no

If you're still unsure you can ask your GP to refer you to a different consultant; you ideally should be referred to an endo specialist as they'll know what to look for and where (checking all round the bladder, uterus, ovaries, bowel, round the back), general gynae can often miss endo as they can just limit their investigation to around the uterus.

You don't necessarily need to have a hysterectomy and that shouldn't be considered at such an early stage of your diagnosis; it is down to how you feel about it too. Check out NICE Endometriosis (google it), it has a pathway / flow chart which specialists should follow, it's useful for us as then we know what route to push for.

Just remember it's your body; if you want to know more / find out more, unfortunately you have to be proactive. You can push for a specialist / second opinion. Also read up on endo treatments, have a search for Endometriosis UK, charity that helps with this page, there's a section on treatment.

Hope that helps xx

[Thecraftyadder]

I can only sympathise having had a previous laparoscopy myself that apparently showed nothing. Around 8 years later I had deep endometriosis diagnosed on my us ligament which must have been missed previously. I don't understand why they would want to remove an organ/s that according to them are healthy! I would definitely be seeking a second opinion as endometriosis can be missed by general gynaecologists and you need to know more about treatment options to make an informed decision. I understand its not possible for everyone but I consulted an endo specialist privately for advice. It cost about £180 but talking to him helped me see how much wrong information I'd been given previously and understand more about my probable diagnosis and choices. I'd discuss your concerns with your gp and see if you can come up with a plan between you to get more advice.

I hope you find some answers soon

[StefaniaJW]

I suggest you reach out to an experienced and highly skilled excision surgeon and ask them to have a look at the photos. I recently saw another woman in the same situation.

Negative lap, sent the pictures to a renowned excision surgeon with extensive experience in the area and he said he would have taken a few spots that seemed like endo for a biopsy. So maybe a second opinion would be a great idea!!

[Lindle]

The UK requirements are that you are only seen by a surgeon with 'expertise in diagnosing and treating endo' so this means having done additional training above their basic ob/gyn training and, in practice, that they are doing diagnostic laps for suspected endo often.

The first thing I would do is get a copy of the lap report and any histology. The BMA guidance is can be downloaded here:

bma.org.uk/advice/employmen...

Be aware though that laparoscopy isn't the gold standard for diagnosing endo - it is only as good as surgical skill/knowledge, pre-lap work up and quality of any samples taken. Often deep endo won't have any endo cells at all and is just fibrosis, but many surgeons will then say it means it isn't endo.

A thorough clinical exam, including internal to feel for buried nodules, is essential and must be done while you are under as well. The lap report can be very enlightening - often when done by inexperienced surgeons they will report only on the reproductive organs which is often a red flag for them having not searched very thoroughly. The ESHRE guideline details the thorough systematic inspection that should be carried out at 1.3.1:

eshre.eu/Guidelines-and-Leg...

I run a dedicated UK guidance and support group based on all UK guidelines, standards and regulations. Send a pm if you would like the link - you can post documents on there.

x

[04gddness8]

Thank you this is all really helpful. I will see my doctor and try to get the lap report and photos.

Would it be worth asking for an mri?

[asoullessstatic]

I'm so sorry you are going through this. I had the same thing happen to me on Tuesday, all the signs and symptoms of endo, being told they had seen it on scans, that they'd seen it on a signmoidoscopy, that I had cysts all over my ovaries, that 101% had endo...when they went on on Tuesday. Nothing. Not a damn thing. They didn't even take photos.

I'm so sorry that you're in the same boat as I am and I wouldn't wish it on anyone at all.