Those of you with endometriosis diagnosed..

[worldwidetravel2017]

... ' how ' did u get diagnosed please?
Thank you

Laparoscopy 25 years ago

No symptoms at all until a few months ago, when my second child was a year old. Periods suddenly became very painful and heavy. Went private and did a MRI scan which showed deep infiltrating endometriosis plus adenomyosis. Completely took me by surprise as I never had any symptoms until a few months ago. Now trying to decide what to do about treating it.

I only started with symptoms probably 2 years ago now
Looking back there were signs, my periods were always heavy and I had pain not just on the first few days, I mentioned to a doctor I thought I had it and they brushed me off
Suddenly started with severe ovary pain then period pains which were nothing like I ever had before

If your tubes are blocked, you are definitely going to need to do ivf. Are you thinking about a laparoscopy to treat endometriosis or to diagnose it?

I had a funny result in a smear test - so they did a laparoscopy to investigate and found the endo which had been causing lots of issues.

Excision is the gold standard treatment, not ablation. The inflammation from endo can have a negative impact on egg development and quality. We tend to have poorer eggs and less viable embryos.

The best options are excision before egg collection, or a long down regulation before egg collection. You'd then want to down reg and use lupron and letrozole for 2-3 months before embryo transfer. Post transfer you want progesterone support for 10 weeks as we have lowered levels and inability to absorb it as well, so you want pessaries and lubion buttock injections.

I've always had symptoms and had a 'suspected endometriosis' dx at 20, with confirmed PCOS. I was told to stay on the pill. I had a miracle baby after a few years TTC naturally. I've since been through multiple private rounds of IVF to get pgt-a euploid embryos.

My GP has been refusing me a gynaecology referral for 8 years. I'm currently bedbound in pain,expecting my period in the couple of days. I'm too scared to transfer and lose a very hard to get embryo due to GP blocking lap and excision.

Hey - we start IVF very soon

Given multiple factors - consultant - ivf / gynaecological consultant has advised we do ivf and see how things are...

( some peoples ivf shows on mri apparently - depending on ivf outcomes / time lines - might get a private MRI sometime)

Had 2 mris in 2023 - one private - one NHS

One did look at my pelvic area

My bodies had a lot of invasive procedures.
Given miscarriage history - and our desire to be parents -
They didnt wana do laparoscopy in late 2023.
( only learnt tubes then blocked oct 2024 ) - werent blocked when we concieved but then early miscarriage b4

Typo
Some peoples endo or ademoysis shows on MRI apparently

Thank you
My smears are up to date and all normal

Our ivf is long protocol - ( with down regulation)

So glad you got your miracle ♡

Hey

Thanks so much 4 this

Our ivf will be down regulation / long protocol.

We are doing pgta testing on any embryos - to reduce miscarriage risk given we have history of an early miscarriage from a natural conception..

When i had miscarriage - i hadn't been on blood thinners or pcos meds.
This time il be on both

My consultant discovered my blood likely clots a bit fast

I had 3 Letrozole cycles last yr - low dose ' - i ovulate myself _ anyway
But goal was apparently to get me to super ovulate
.
Shortly after that - did private hyfosy to show blocked tubes..

Continued , so sorry to read that you are currently bed bound :(

@overtothere

Out of curiosity - did any of you have elevated crp ( inflammation) marker due to endo ?

We keep an eye on my crp as ive had 3 x reoccuring benign colon polyps scenarios..

MRI scan as it showed my bowel was stuck and ovaries too. Also had a laparoscopy.

Had two children before I was diagnosed but had some issues which may have been due to the severe endometriosis although nothing was noticed during emergency c section.

I have no symptoms now but had various tests due to bowel symptoms which would have been called IBS without the scan.

Hey
Thanks 4 this

Yeah - I've been given ibs label ' from a gastro consultant
But my dad and sis also have IBS

Im open to private mri 1 day

Just ivf attempt 1 priority right now

Have had a bunch of colonoscopies to remove polyps ( all benign)

One ovary has been harder 4 them to find twice on transvaginals etc
But latest scan was apparently wrong time in my cycle 4 them to be able to find / see both ovaries easily anyway

OMG this happened to me too! My GP told me 4 years later that I was diagnosed in 2018. But literally the only health care I had that year was antenatal, then the CS, so she said they must have seen it during the CS. No further details e.g. stage, where it was or anything. Just a note from 2018 that I apparently have endometriosis (which fits with symptoms, fertility issues etc). It's been hard to take in, so it's amazing to see that someone else got diagnosed this way, too.

I'm waiting for colorectal polyp surgery right now but IDK about crp markers. They found mine after I went for a surgery consultation to remove what I thought was a haemorrhoid.

@MiraculousLadybug no way! I wonder if we had the same surgeon 🤣 I have spoken to several Endometriosis charities who have all been shocked at how / when I was diagnosed. It must be quite unusual!

Hey - when u say colorectal polyp surgery - dya mean a colonoscopy?

Crp marker = 4 looking at whole body inflammation
An easy / quick nhs blood test that nhs gp can order

Adenomyosis can alter the shape of the uterus which is why it can be diagnosed on an ultrasound. Mine was picked up on an mri aswell with endo prior to my last op as I had a large growth on one ovary.

not until I had a hysterectomy at 39 following years of pain and bad periods, the histology showed endo and adenomyosis

No the surgeon said mine's in an awkward place (without TMI) so apparently it has to be excision surgery under GA potentially removing part of my intestine/bowel/whatever it's called at that point. 😳 I'm getting a second opinion next month (we've moved areas so I've gone back down the waiting list but get to see someone new) and hoping they can just do a colonoscopy instead and that the first surgeon was wrong.