Laparoscopy found nothing

Dontgonearthecastle · 2022-04-08T09:20:13+00:00

Hoping someone has had a similar experience and got some answers! After YEARS of unexplained bloating and pain (had all the tests in my 20s diagnosed as IBS), heavy clotty periods (sometimes mostly just clots) and pain that spread to my back I finally convinced a gynecologist to suggest a laparoscopy for potential endometriosis. (I'm 41 now this started when I was 18) He wasn't keen as I'd had two children with no issue and don't suffer pain when having sex, but I felt I had all the other symptoms. However, when I woke the surgeon announced that she'd found nothing but scarring, which may have been endometriosis

ohthejoysoftoddler · 08/04/2022 10:23

So they did find some endometriosis? Not enough to warrant it being removed?

Original poster

Dontgonearthecastle · 08/04/2022 10:25

Pressed send thanks to the massive ad at the top!!

I had a bad reaction to the GA so I was still out of it when she spoke to me (which I will complain about) so couldn't ask any questions.

My follow up is not for 4 months! But I need answers as the pain can't be normal. Just before the op, I suffered the worst ovulation pains ever. It spread into my back and hip to the point I could barely walk, and was in tears daily. I thought it was sciatica as it dragged on for 4 days but then I woke up one day and it was gone! With no remaining pain.

As for the scarring - I thought endometriosis didn't just disappear? She seemed to suggest that it had once been caused by endometriosis which has now "cured" itself.

If anyone can help I'd be grateful. I just can't believe I have to wait 4 months for an answer from the consultant.

Many thanks for reading all that.

OP posts:

Original poster

Dontgonearthecastle · 08/04/2022 10:27

Surgeon said no endometriosis. Just scarring which could be from "old" endometriosis which had been "cured"

OP posts:

ohthejoysoftoddler · 08/04/2022 11:31

I had the same issue, spoke to me after the GA and it was so hazy!

I do believe that endo can cure itself during childbirth. But tbh the amount of pain you are in etc, I think you'd expect them to find more

AttilaTheMeerkat · 08/04/2022 12:00

I would certainly complain about being spoken to so soon after surgery as this is poor practice on behalf of the hospital. You should also have been given a follow up appointment far earlier than 4 months down the line. In both respects I would contact PALS if this op was performed at a NHS hospital.

Original poster

Dontgonearthecastle · 08/04/2022 13:25

@AttilaTheMeerkat

I would certainly complain about being spoken to so soon after surgery as this is poor practice on behalf of the hospital. You should also have been given a follow up appointment far earlier than 4 months down the line. In both respects I would contact PALS if this op was performed at a NHS hospital.

I will do as I'm not happy. Thank you for your advice - I've read many threads you've commented on and am grateful for that!

Still bemused by endometriosis scarring but no active endometriosis, especially as the pain has worsened since my second child. Hopefully I'll get some answers!

OP posts:

AttilaTheMeerkat · 08/04/2022 14:09

Endometriosis still cannot be ruled out here, it could well be that the surgeon missed it because it can present atypically as well. Chronic endo can cause pain too.

Have a look at Endometriosis uk's website:-
www.endometriosis-uk.org/

AndSoFinally · 08/04/2022 17:10

Or it could just not be endometriosis.

Why aren't you convinced by the IBS diagnosis? That would explain everything bar the heavy periods, and some people do just get heavy periods.

Not enough information here to judge really.

AgnesNaismith · 08/04/2022 17:14

Have a look into adenomyosis too OP!

Porridgeislife · 08/04/2022 17:24

Endometriosis at its end/terminal stage becomes fibrotic which is what she most likely saw and deemed to be scarring. At its worst it becomes “frozen pelvis” which is where your pelvic organs are glued together.

It doesn’t mean you don’t have active endometriosis not least because it may well be there underneath the scarring. It’s a chronic, lifelong disease sadly.

The UK has a defined pathway for endometriosis care and dedicated tertiary treatment centres for severe endometriosis. Unfortunately being fobbed off by a general gynae is a common experience. There’s an excellent group on Facebook called “Endometriosis Guidance and Information Resource UK” with lots of ladies with a very good understanding on how to navigate the system.

Original poster

Dontgonearthecastle · 08/04/2022 17:34

@AndSoFinally

Or it could just not be endometriosis.

Why aren't you convinced by the IBS diagnosis? That would explain everything bar the heavy periods, and some people do just get heavy periods.

Not enough information here to judge really.

Because the pain and symptoms are cyclical, they're not random. They're not triggered by any specific food (done all the dietary exclusions with the hospital dietician/nutritionist) I don't have IBS-C or IBS-D, my movements are normal, except when I have pain there is mucus. But again that symptom was dismissed by the gynaecologist.

I will gladly accept it's not endo as no one wants such a disease, but I do want answers as I don't see why I should spend one week a month (if I'm lucky) not in pain and not looking like I'm in my third trimester. The doc suggested some water retention pills once when I complained I painfully bloated up by an extra 7-8 inches regularly, and suggested I lose some weight (5'8 and size 12 apart from the size 16-18 days)

I've also had scans and blood tests for CA 125, all clear and I assume they would have seen anything nasty in there when they looked. Least I hope so.

OP posts:

Original poster

Dontgonearthecastle · 08/04/2022 17:36

@Porridgeislife

Endometriosis at its end/terminal stage becomes fibrotic which is what she most likely saw and deemed to be scarring. At its worst it becomes “frozen pelvis” which is where your pelvic organs are glued together.

It doesn’t mean you don’t have active endometriosis not least because it may well be there underneath the scarring. It’s a chronic, lifelong disease sadly.

The UK has a defined pathway for endometriosis care and dedicated tertiary treatment centres for severe endometriosis. Unfortunately being fobbed off by a general gynae is a common experience. There’s an excellent group on Facebook called “Endometriosis Guidance and Information Resource UK” with lots of ladies with a very good understanding on how to navigate the system.

I didn't know that. Thank you, that's something to ask about.

OP posts:

itsnotmeitsnotmyfamily · 10/04/2022 11:42

I was told similar re endometriosis, they saw adhesions on MRI from both ovaries to bowel - but then said they doubt it’s endometriosis and probably ‘just one of these things’ . I remember GP at the time saying if it’s not endometriosis then what is it - she said only other thing would have eg peritonitis or appendicitis neither of which I’ve had .

My local hospital won’t do laps for endometriosis unless your BMI is between 20-25 so no way I’m going to find out anytime soon !