Endometriosis / blood test - Fertility Network UK

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Endometriosis / blood test

Anna00 profile image
29 Replies

Hi girls!

have any of you ever done blood test for endo? I searched in google and it said there is a blood test which can detect a certain protein produced by woman with endometriosis. And if they find it in you blood then the second option is laparoscopy. It also said they can detect it with ultrasound which uses sound waves to produce images of your pelvic,this is not for 100% but they can detect and if they find a suspicious thing then you need a laparoscopy.but the blood test is the first thing to do. My dr offerd me laparoscopy to check if I have endo or not but they never mentioned the blood test, is anyone ever heard or done this test? ❤️xx

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Anna00
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29 Replies
AllWeNeedIsluv profile image
AllWeNeedIsluv

Iv never had a blood test did have ultra sound which didn't reveal anything but had lap and they found endo

Xxx

Anna00 profile image
Anna00 in reply to AllWeNeedIsluv

Yeah it said the ultrasound is not very accurate but they defo should do blood test to check. I should ask my dr, it’s good if they can at least be 50% sure I have it or not. Hope you’re ok lovely xxx

AllWeNeedIsluv profile image
AllWeNeedIsluv in reply to Anna00

Yeah ask hun. Iv never heard of it tbh and my drs never suggested it before they referred me to gynae they knew I believed i had endo. I'm not too bad thanks 💗🤗😘

Wishfully profile image
Wishfully

I think it’s commonly diagnosed via laparoscopy. They were going in there anyway to cut out Derek, my dermoid cyst, and discovered the endo while they were in there. I think if you can avoid the surgery to check / diagnose then that can only be a good thing! I now hate anyone going near my belly button, but then I am a complete whimp with these things! 😣 What makes you suspect endo? Xx

Anna00 profile image
Anna00 in reply to Wishfully

I hate someone touch my belly botton that’s why I’m searching and searching🤦🏻‍♀️😂 yes laparoscopy is the only way to treat endo it just said they can detect if you have it or not by this kind of blood test, it’s good if they can find out before the surgery, I’m so scared of it. My ivf failed recently and I have painful period each month just first 2 days,also I don’t have fertility problem but couldn’t get pregnant naturally, that’s the reason my dr offerd me, I don’t know if I have it or not. Was it really bad when you done it? xx

DianeArnold profile image
DianeArnoldPartnerNurseFertility Network UK

Hi Anna00. The only way to diagnose endometriosis properly is by laparoscopy. A scan can show up adhesions, but not what is causing them. Endometriosis can move around and hide behind the womb in the Pouch of Douglas. I've never heard of another way to diagnose it properly. Good luck! Diane

Anna00 profile image
Anna00 in reply to DianeArnold

Hi DianeArnold, Yes of course surgery is the only way to treat the endo but I’m just wondering if they can detect it before the laparoscopy, even if it’s 50% accurate,it’s so scary tbh. X

DianeArnold profile image
DianeArnoldPartnerNurseFertility Network UK in reply to Anna00

Hi Anna00. Yes, they can get a pretty good idea from symptoms and basic scans, but if it found during a laparoscopy, they can "tidy" it up, which would help with your fertility. Diane

Anna00 profile image
Anna00 in reply to DianeArnold

Thanks Diane x

Kiedy84 profile image
Kiedy84 in reply to DianeArnold

Hi, when I had a scan as a teanager I was told I had fluid in the Pouch of Douglas but nobody ever explained what it was and if it's dangerous. When I had a recent vaginal ultrasound the doctor didn't mention anything. Can fluid be dangerous? Shall I ask my doctor next time? Xx

in reply to Kiedy84

A small amount of fluid is normal.

Agee with allwwneedisluv and Diane- my endo never showed up on ultrasound. I was never offered the blood test, because of some symptoms my fertility doctor wanted to check for endometriosis so he recommend a laparoscopy. He didn’t suggest any blood test - he ordered a scan which as I said didn’t show any endo despite having endo- mine was in the place Diane mentioned pouch of Douglas which is a very common place to have endo and does impact on fertility. I would be very skeptical over blood tests and ultrasound detecting endo - if it was so accurate women wouldn’t be recommended a laparoscopy to check for endo. That is the only way to know if you have endo. In years to come I hope that changes xoxo

Anna00 profile image
Anna00 in reply to

Hi jess, I never done ultrasound basically they never done any test on me regarding endo,so might worth ask them. But yeah as you said laparoscopy is the only way to treat it. wish there was other way than surgery trough my poor belly botton. xoxo

in reply to Anna00

I know me too - I wouldn’t have to wait so long for my second laparoscopy ( in 2 weeks Friday) if there was a simple blood test we’d all opt for that 😊

The belly button won’t hurt promise 😊

At least you’ll know you’ll know for sure and not having hanging over you 🙌🏻 xoxo

Anna00 profile image
Anna00 in reply to

Really you doing it again in next 2weeks? You’re so brave😊

I know it’s not painful when they doing as I’m in sleep I’m scared after that,the stitches the pain🤦🏻‍♀️ I’m so bad I know. How many hole I get is it just one or it’s more? I know it’s better to do it to be sure the decision is more difficult I think.

Best of luck to you xoxo

in reply to Anna00

Nah not at all hun! I’m sure the endo is back since my miscarriage and stopping us from conceiving and my symptoms are horrendous so lap and hysteroscopy is the way to go 😘 definitely worth it 💗

I had 3 incisions- but only one I can still see. It’s very small on my left side- it’s where he inserted various tools to remove my endo implants. Other people wouldn’t notice it it’s so tiny.

Anyway you’ve nothing to lose by having it done and hopefully lots more to gain 🤰🏼🙌🏻 Seeing those two lines is worth it- it’s the best feeling in the world 💗

All the best with everything too xoxo

Anna00 profile image
Anna00 in reply to

You’re right seeing those 2 lines worth doing everything! If you don’t mine me asking do you have too much pain? What are your symptoms, I searched a lot and the only thing match with me is my period pain and of course the main one couldn’t get pregnant.

All the best to you too hopefully this year we will see our magic 2line🤞🏻xoxo

in reply to Anna00

It’s fine hun. It’s a long list!! You have been warned...,

- periods that start with brown/ pink/red for a fews before period starts.

- periods that vary in length-sometimes very short ie under a day other days very long.

-period pain that starts a few days prior period so bad at times I cannot do anything and am doubled over worse during the night. The pain actually makes me feel sick ☹️

- heavy periods, including huge blood clots which cause flooding. I have to wear dark clothes in case I flood.

- cramping and spotting between my cycles.

- diarrhoea and constipation really awful especially around periods sometimes faeces front end ( tmi i know 🙈)

- blood coming out back end during period ( again I know tmi 🙈)

- severe pain when having a pelvic examination and pain inserting tampons too.

- severe pain lower left abdominal side ( I used to think it was ovary pain till my lap) and sometimes I get it right side too now.

- fatigue

- low iron- I take 3 ferrous sulphate a day prescribed by GP.

-unexplained infertility for nearly 6 years till endo diagnosis!

I felt relief when I found the cause of infertility ( medics made me feel like I was paranoid but I knew I wasn’t) and was encouraging when we managed to conceive ( did miscarry) after 6 years of not it felt progress 😊

I find endo to be very debilitating indeed and I’m on prescription painkillers to manage this condition ( until my next surgery which I hope will sort the pain & infertility)

Endo is very strange- you can have little to no symptoms and severe endo or every symptom going and very mild endo ( that was me)

Hope this helps xoxo

Anna00 profile image
Anna00 in reply to

Thank you so much for taking time to reply! Very nice of you xoxo

I have few if your symptoms, I thought it’s normal to have brown or pink discharges before your period, my dr said it’s old blood,normally for a day before the period starts.

I have period pain on my first and second day some months it’s a bit better and the other the pain killing me. I have clots on my each cycle sometimes more sometimes less. I asked my dr million times and she said it’s normal to have clots!

I have a bit pain during pelvic exam but I guess my problem is every time they start to exam me I can’t telax my muscle and that’s the reason I get pain, even for internal scan took 15 min for my dr to calm me down and at the end I asked him if I can insert it by myself which took another 15 min!🤦🏻‍♀️😂 so embarrassing. I’m really scared to have lap I know you said it’s not that bad but I’m so so scared xoxo

Thanks again for your time and help xoxo

Hi Anna00,

I work professionally in the world of endometriosis and there is no blood test to diagnose endometriosis - the "gold standard" is laparoscopy. Diagnosis would definitely be easier if there was a blood test! What is sometimes talked about is the CA125 protein blood result which is often used as an indicator for ovarian cancer. Research has shown that women with endometriosis often have a higher level of this protein present in test results but this is only when they have endometriomas (endometriosis in the ovaries often called chocolate cysts). So, if you had endometriosis and it wasn't present in the ovaries, then it likely wouldn't show up in the blood test. If this rate was high, the medical team would want to do further exploration to rule out cancer so you may end up undergoing a laparoscopy anyway.

As you've said, ultrasound is hit and miss and would only show up large masses or nodules of endometriosis so would miss anything smaller which might be causing you problems.

It may be worth asking whether it would be a diagnostic lap or whether the team would also use the time they were in there to also treat any endometriosis they find. There's studies to suggest that removing endometriosis during the surgery can improve conception rates.

Wishing you all the very best.

Anna00 profile image
Anna00 in reply to Everyotherbiscuit

Thank you so much for the info! Very helpful. I only have the symptoms I said even my dr thinks there might be just 20 to 30% chance that I have it but they offered me anyway. You think is it worth to do that CA125 blood test? They never done any kind of test on me regarding the endo.

Wishing you all the best too xx

Well, I never have had anything like that...But, I've read a lot that Laparoscopy is recommended in cases of endo all the time. Plus, as if your doctor is telling you to get one. I think you should go with it. So, yeah! Anyway! Best of luck! Endo is becoming too common among infertility cases now...xx I hope you get better. xx

Anna00 profile image
Anna00 in reply to DaenerysStormborn

Thanks lovely xxx

Never heard of the blood test but I recommend a lap, it’s not fun but I fell pregnant twice in the year after mine having never fallen pregnant before. Sadly I miscarried due to other factors but I am so glad I had the lap.

Anna00 profile image
Anna00 in reply to Lizzielizzielizzie

Oh I’m so sorry you lost it,but that’s great you fell pregnant twice!! How painful it was? I just hate the way they go trough the belly bouton xx

Lizzielizzielizzie profile image
Lizzielizzielizzie in reply to Anna00

I’ve used bio oil on my scars and they are not bad at all now. Pain was manageable with paracetamol but I needed two weeks off work (only took ten days and that was a mistake)... I’m a teacher of young children so it’s a pretty active job. I didn’t react well to the general anaesthetic (sick) so that didn’t help but you get over it!

Anna00 profile image
Anna00 in reply to Lizzielizzielizzie

How many scars you have if you don’t mind, I thought it’s just one trough the belly botton. I don’t think I react well tbh as I had surgery in the past and reacted bad with anasthetic.this is another reason I don’t like to do it🤦🏻‍♀️ x

Lizzielizzielizzie profile image
Lizzielizzielizzie in reply to Anna00

I’ve got three, two near my knicker line as well. I think three is normal especially if you have anything treated in there. They’re all barely visible now, 18 months on. I think I’m the only person who can see them, I’ll happily wear a bikini next time I go on holiday. So don’t worry about the scars... a baby would be better than a perfect tummy and any pain or sickness doesn’t last long compared to being infertile forever. That’s my perspective anyway.

Anna00 profile image
Anna00 in reply to Lizzielizzielizzie

Yes so very agree with you! A baby is better than any thing. Wish we both get our miracle soon xx

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