Endometriosis spots seen during c-section- wasn’t told

[EllieJai44]

So back in 2021 I had my son and needed a c-section, the whole labour was something I always look back on so I requested my notes for the pregnancy and birth to read through.

In the notes of my c-section it has under other findings and in the written note section- ‘Numerous endometrioic spots on uterus, tubes and ovaries’

That’s it, nothing else- I was never made aware post surgery and it hasn’t been passed onto my GP

I do and have had symptoms for many years but never had anything investigated as kind of thought nothing would happen and it would be brushed off as ‘normal period’ 🙄 even though my periods are really heavy and painful and I suffer with fatigue too, the GP just always sent me for a blood test to check iron levels

What can I do with this information? I’ve read up the diagnosis pathway and it states referral, then either ultra sound or MRI and does say it needs to be visualised to confirm endometriosis but what happens if it’s already been visualised in a surgery by a obstetrician and gynaecologist?

I have booked a GP appointment for 2 weeks time

If they’ve already seen it then i imagine it would be back to gynae to discuss treatment
mine went gynae, ultrasound, MRI, gynae, MDT meeting, gynae, surgery

I’ve never been to gynae for this issue so guessing it would start as a whole new referral 🤔

This happened to me, too! It was just dumped on my medical records post-CS with no follow up and no one told me. My GP found out a few years later during an investigation for something else. It's up to you what you do with this information. You could make an appointment with your GP and ask to be referred to gynaecology for endometriosis if you're having symptoms. I'm on a very long waiting list for gynae.

I don’t even think it’s in my GP notes as it’s not on any of my discharge letters but I am going to speak to my GP hopefully they will refer me forwards, I do have symptoms and actually it would explain quite a few things from fatigue, how heavy my periods are and wierd painful muscle spasms I get in the lower pelvic region!

I hope you get somewhere with it all.

Anyone else had any similar experience?

A lot of women have endometriosis, but the symptoms depend on severity and location. When I had CS (and I had a surgery for endometriosis 1.5 years prior to it) I was told they see during CS all the time in patients who never had and never will have any complaints/ complications. Sometimes it's so prolific they couldn't believe the patient had no complaints.

You can have Mirena coil inserted (I'm on my 2nd already) and most likely your symptoms will go away.
I had a huge endometrial cyst and it was the only reason I had a surgery, noone will perform a surgery on you for the symptoms you have described, and most likely you'll only get referral for ultrasound.

My biggest point is that post section I was never told about their findings nor asked if I had any symptoms, which if they had asked me I would have said actually yes I do- I don’t really want any surgery if I can avoid it but more wondering if based on symptoms and it already being seen on my uterus, tubes and ovaries if they can make a diagnosis off of that- ultrasound and MRI’s I’d have if offered

Unfortunately my periods are extremely heavy, for the first 3 days I cannot go too far from a toilet because I will bleed through a super tampon and pad within 1-2 hours, I also have to take co-codamol to get even a touch of relief from pains, around ovulation I get a day or 2 of bad pains too, luckily in between these I don’t have too much pain, sometimes need an ibuprofen, but I do experience cramp like spasms (like what you can get in your calves) that happen with no warning and have me doubled over.

i know this isn’t comparable to some women’s pain and experiences

I’m also currently not on any form of hormone contraception and I’m dubious to go on any as they can have an impact on weight and I really don’t need to become any heavier than I already am