Endo?

[OchAyeTheN00]

This is the first time I’ve considered this so apologies for a lot of info.

back in 2019 I started struggling with bloating and abdominal pain. I was subsequently diagnosed with hypercalcaemia which can cause constipation, bloating etc so assumed it was that. It got worse on the first couple of days of my period, always. Had surgery which cured my hypercalcaemia, gastro symptoms continued. Cut out gluten, it improved day to day but still had issues most periods.

also intermittent pelvic cramping outside of menstrual cycle. Ultrasounds (3) all normal.

also since around this time, I started suffering with spotting before my period. Sometimes up
to 5 days before my period, usually brown / dark.

forward to present day. Back in August I started suffering with left sided abdominal pain most of the time. Assumed it was gas. But noticed when my period started that I only ever got pain on the left side and it’s tender to the touch. It’s painful to walk, if I don’t move I’m ok. I always assumed it was trapped gas. If I try to move I’m in pain, like moaning out loud, clutching my left ovary area pain, whimpering and being a general baby. After a day or two of my period, it goes. It feels like I say, tender, like a really strong stitch. It doesn’t feel like period cramps.

It Google tells me trapped wind shouldn’t hurt to the touch and neither should period pain.

so I’m just wondering if this sounds like potentially endo? My GI tests have come back normal, bloods normal etc

Ive had a pelvic Ct, all normal too.

Endo is usually diagnosed via a laparoscopy which is keyhole surgery. Other tests like internal ultrasounds and blood tests do not detect it. Any symptom that is cyclical in nature and or gets worse up to and including menses should be checked to see if endometriosis is present.

@AttilaTheMeerkat thank you, I did read that and don’t want diagnostic surgery really. I just wondered if my symptoms indicate it could be endo, particularly the spotting and tender areas on the first couple of days of my period. The pain feels quite extreme and makes me quite anxious, thinking there’s something serious going on and then it lessens / disappears / sometimes doesnt f always appear so I forget about it.

One possibility is an ovarian cyst. How recent were the ultrasounds? You would see a cyst on an ultrasound.

It could be endo but there are other possibilities.

Hard to say really
I have stage 4 endo with adenomyosis and 2 ovary cysts
My pain is either very ovary specific and like someone is twisting it tighter and tighter, or like period cramps on steroids. It's totally random, worst at ovulation and on my period but can happen any time

If a lap op is performed you do not want this to be just diagnostic.

I have very similar symptoms, particularly the very intense left side pain. I have always believed and assumed I have endometriosis based on the symptoms, but unfortunately have never been able to get a GP to either understand or be willing to investigate. The closest I got was one GP who said that yes endometriosis seems very likely but come back when you want to have a baby. The NHS is shockingly awful when it comes to endometriosis. I hope you have more success than me.

Endo doesn’t always show on scans so if nothing shows up it doesn’t mean you don’t have it, but if there is a endometrioma cyst that can show on an internal ultrasound. That pain does sound quite like my endometrioma. If you have one then it’s likely you have quite severe endo so I would say worth pushing for that ultrasound if you haven’t had one recently

Should add I haven't had an op yet as they diagnosed via ultrasound and MRI, the op will be to remove rather than diagnose

Thanks all. Ultrasound and CT scan were within the last 6 weeks so would have expected other causes to have shown up at those which is why I am suspicious of endo as I understand negative scans don’t rule it out.

When the pain strikes it’s very scary! Weird how I’m comfortable if I don’t move though.

My niece had an MRI to check for endo which is obviously a much better choice than a laparoscopy.

It is often missed by ultrasound technicians unless they are done by someone with knowledge of endo. I follow an incredible doctor who performs a lot of endo surgeries. He also reviews scan images and ultrasound images that patients have been given when they are told there is nothing to see and there is a giant 10cm endo cyst in the middle. He shows snippets of his surgeries too. Here is his website drvidali.com/

Having been diagnosed over 20 years ago I find the best approach with GPs is to state what you want and then why you believe you should be referred. The symptoms you have are not normal, your pain level is also not normal and you can state that in your GP appointment.

The best pain chart I have found to describe pain is this one because it details how it affects you

attackofthecraps.wordpress.com/wp-content/uploads/2014/03/painscale.jpg

I have endo and was diagnosed without surgery. I had an MRI and two ultrasounds, I think because the first one was a bit rubbish. I think the cysts and adhesions were enough to diagnose. I'm not a big fan of surgery, so I just take the mini pill and I've had no symptoms since I started that.

My pain was really localised, I think because one of my ovaries is stuck to my uterus, so cramping really pulled at it.

Internal ultrasound diagnosed mine which is chocolate cysts on my ovaries. And I had symptoms like this.

I was diagnosed with endo in my 20s, via a laparoscopy, and my main symptoms were pain and brown spotting a few days before my period. I think experienced clinicians can look for endo using transvaginal ultrasound, my gynaecologist had certain techniques. I found the mirena coil helped me.

Thank you all. The pain is the worst its been and due to the tenderness when you touch it and the fact I kept waking up all night due to the pain any time I moved I’ve contacted 111 in case I’m barking up the wrong tree and it’s something else that’s urgent.

got an OOH appointment in an hour so I’ll let you know what happens

Consider adenomyosis

Doctor was lovely. Did a full work up and ruled out anything currently urgent, but safety netted with ‘if it gets worse then present to A&E’.

he suggested an enlarged ovarian cyst that’s suddenly grown (although the fact I’ve had it more than once just not this bad suggests it’s not that) and the other thing he said which he went into detail about was endometriosis.

I need to see my GP tomorrow to arrange an ultrasound.

Thanks for the update. Are you mid cycle? I had pain mid cycle (ovulation) and around my period.

No im on day 2 of my period. I had some left sided pain mid cycle though, I’d had an ultrasound done a few days before and it was clear so I was relieved I had because otherwise I’d have been worrying.

then period has started and the pain is much worse. As in it hurts to walk worse, hurts to pee, any kind of movement really. And tender to the touch as I say.

So today is day 3 of my period and the pain is so much better. No longer unable to walk without pain, I can press on where the pain is quite firmly now and it’s like a 1 on the pain scale whereas yesterday was like a 3/4, I could barely touch it and even my underwear hurt.

does this sound like anything you guys have experienced from a point tenderness perspective?

Yep, I can't even touch my stomach some days

Wow I had no idea!

Sorry for the delay, it was my twins birthday party yesterday! The ultrasound will be able to rule out a lot of things. I go privately to the baby scan/well woman clinics as they can usually see you quite quickly and can refer back to the NHS. I think they usually cost around £130 and saves the wait.

Endo is very painful and I had it on my bladder (thankfully not bowel) but the point being that the pelvis is affected as a whole so it doesn't surprise me that you experience discomfort when you go to the loo.

I use a heating pad, period pain menthol patches, paracetamol, dihydrocodine, naproxen and oral morphine for the pain

@Hillsmakeyoustrong i hope you all had a lovely time!

I’ve had a recent private ultrasound scan but he wasn’t a consultant radiographer, just a sonographer and whizzed through the scan, looking at ovaries, endometrial thickness and size of uterus only really. I think an nhs scan with a specialist radiographer would be more likely to pick up endo but given symptoms are fairly recent (spotting started in 2021, pain more recently) I doubt there’s serious endo there (if it is endo) and won’t show on ultrasound anyway.

@buffyspikefaithangel bloody hell! You must be in so much pain.

Then the more sinister stuff is unlikely which is good. All I'd say is that endo can progress quite rapidly but it is treatable but you do need to get on it if it is. Endo had tethered my left ovary (also where my pain was as that's where i ovulated from every month) to my uterus and a consultant gynaecologist was able to diagnose that through vaginal ultrasound. If you're having pain when you pee, have you had a urine test?