Who to trust in the medical world?!?

[Kate8989]

I’m feeling reflective at the moment....
I had a laparoscopy for pelvic pain a few weeks ago... was told by one gynaecologist that’s the only way to diagnose Endometriosis and I understand that.
HOWEVER I went to a specialist centre this week for internal scans etc and they found MORE and gave more of a detailed diagnosis than the laparoscopy did.
Just feel a bit emotional that I potentially put myself through an op for nothing and have to have another one anyway 😢 x

@Kate8989 I had a laparoscopy for apparent endometriosis which it wasn't it was something completely different. Impacted bowl! I went through the op for no reason so I understand what you feel x

Firstly scans often don't show endometriosis, so they can't be relied on to rule it out. In the majority of cases the op is required to make a diagnosis (I am an example of this)

Secondly not all gynae Drs are specialised in endo and it can actually be missed by Drs that aren't specialists. This would explain they found more when you went to the specialist centre. Sadly not enough is known about endo and there isn't enough specialists.

I'm sorry the way you're feeling the way you are. Unfortunately battling endo can be long winded and exhausting. More than one op is often needed anyway. I know it's crap but try looking on the positive that they've spotted the extra endo which means they can now work on treating it

Was it an MRI scan? A specialist in this area can look at an MRI scan and see signs of endometriosis (eg things out of place due to adhesions), deep infiltrating disease, endometriomas, nodules and possibly adenomyosis. On the flip side, a non-specialist may miss things in a laparoscopy. My disease is mainly clear, yellow or orange rather than typical dark red / black presentation.

I had to have two laps before diagnosis and no treatment until the third - fortunately those two laps got me in front of an endo specialist who I wouldn’t have seen without the diagnosis, so it’s not wasted.

Unfortunately, despite how common endo is, it seems many gynaecologists have very minimal knowledge or skill in dealing with it.

I heard something like the average time for diagnosis after onset of endometriosis is 7 years. This is just to give you a bit of perspective that mot doctors don't have much of a clue and consider this quite a niche area (basically all of women's health is).

It will take time, but you are being looked into - serious progress has been made!!! Look at the progress, not the future. No one knows the future.

@Bambamber- thank you, I appreciate your comment. I’m new to this “endo world” and learning things all the time. I couldn’t believe how much the specialist could see from the scan.
TammySwansonTwo- Hey, yes I understand what you’re saying. I just always want to make sure I’m doing the right thing especially as I’m wanting to have a baby. They found 3 nodules during the scan. 1 in my left uterosacral ligament and the other 2 in POD area. Luckily all are less than 1cm and haven’t infiltrated so the next op shouldn’t be as tricky as I feared. I just can’t wait to get sorted x
@physicskate- Hey lovely, you know what I’m like at the moment lol. Very reflective and ALL I can think about is the future even though it feels so out of my control what will happen. How are you doing!? X

The laparoscopy is needed to confirm whether there is endometriosis there. A scan in itself is not diagnostic but once the diagnosis has been made and the findings of the laparoscopy are known a scan can be used to assess things further.

If you hadn’t had the laparoscopy they would still be able to see the nodules on the scan but they wouldn’t have known if it was endometriosis or something else.

I went through all this in my early 20s, didn’t try for kids until 33 and got pregnant right away so the findings don’t necessarily mean you’ll struggle to conceive - I have one mangled tube and I managed to conceive twins, so you never know.

@TammySwansonTwo- thank you! Did you go through all the fears, worries and emotions im experiencing now? X

@kate8989 - I'm ok. Next scan is tomorrow after four days of stims. Not sure what comes next, but I've got a shopping bag full of drugs! Had electroacupuncture today, which was strange!

I know you're focused on the future. The only thing keeping me much more sane than I felt earlier in the year is focusing on now and not dwelling on the future. OK sure, I still think about the possibilities, but try to focus on all the stuff happening today. Hour by hour, sometimes minute by minute. Be kind to yourself!!!

Of course. My Health was no good, I’ve had six surgeries now and every form of hormonal treatment - hasn’t gone too well for me but I have my boys so I’m beyond grateful for that. I hope the surgery goes well for you.