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Endometriosis UK
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Stage 4 endo confirmation

Just curious to see if anyone else has had a confirmed diagnosis of endo without undergoing a laparoscopy?

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I had a confirmed diagnosis of Endometriosis from an MRI scan. So it is possible to diagnose without a laparoscopy but it isn’t as easily diagnosed. I then had a laparoscopy that followed where they discovered how invasive the Endometriosis was and they also diagnosed me with something called painful bladder syndrome. I have stage 3 Endometriosis and it’s 4 days since the laparoscopy! Hope you get some answers x

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Hi Ali, I had an MRI in August last year which showed up endometriotic nodule between my bowel and womb which was misdiagnosed as a fibroid, but the consultant who has diagnosed me with stage 4 says she can feel my endometriosis and that I wouldn't need a lap to confirm, I've had 2 hysteroscopies since September, due to have my third on the 7th of May due to hyperplasia of the womb, she has also said due to where my endometriosis is it wouldn't be the best decision to have it removed unless I really begin to suffer from it as it is a bigger op than most and the recovery time would be lengthy, but I'm noticing each month my periods are getting more painful with it, I'll ask her for some more advice when I see her on the 7th, thank you x

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I’m glad you know exactly what you’ve got and you’re getting some treatment to help you, that’s a step forward. Have you considered anything to stop your periods to try and help with pain like contraceptive pill or mirena coil? I’ve just had the mirena coil fitted so hopefully it’s 3rd time lucky as two other pills I was previously given didn’t work for me. Good luck x

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I was on the pill until december 2017 from the age of 16, so 6 years all in all, I decided to come off it when i got engaged but because of my endometriosis they've referred me to fertility so I'm not using any contraception, I have invested in a livia tens machine, I use that with mefenamic acid and when the pain gets really bad I take codeine as well, it's just trial and error at the minute trying to find a balance of what works for me, hope the coil helps, thank you x

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Thank you. I’ve considered getting a tens machine as my GP recommended it to me but I’ve been unsure. Does it help you a lot? X

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What is painful bladder syndrome? I get painful bladder when full on right side..

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Painful bladder syndrome is like IBS but of the bladder. The way my consultant explained it was if you imagine you have a bin and you have a liner in that bin that collects the rubbish, the lining of the bin that I have had holes in it meaning acidic or some other foods irritate the bladder. It’s nothing I’ve done to cause it, it correlates extremely commonly with Endometriosis. To diagnose it I had a camera put into my bladder during my laparoscopy x

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Thanks that makes sense x

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It is possible to diagnose via mri but you are better to have a laparoscopy if endo is suspected even though it is a lot of hassle. A laparoscopy is going to show how bad the endo is and will also show if it’s growing on ovaries or fallopian tubes etc or maybe if the bowel is connected to an ovary, from there they can plan what further treatment you’d need, where an mri isn’t going to show that.

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I've had a hycosy so I know there's no endo effecting my ovaries or tubes, it's near the opening of my uterus, I think the regular hysteroscopies are determining any change, but my consultant doesn't feel as though I need a laparoscopy, I was just curious to see if anyone else has been diagnosed with it being felt on examination as oppose to seen on a laparoscopy

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Yes I had it confirmed from and MRI scan, because it was invasive. They found endometriosis nodules between my bowl and womb in the pouch of douglass, endo in this location is by default catagorised as Stage 4. They often do an MRI to help with surgical planning so they can see where the deep infiltrating areas of endo are, you should still be having a diagnostic lap, and excision surgery (often done at the same time) to remove these areas.

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My consultant said the operation would be invasive and recovery time would be longer than usual, I'd rather avoid surgery if possible, whilst my symptoms aren't to bad I will definitely be holding off for as long as possible, the location makes it difficult she said also, just gonna keep going for my 6 monthly hysteroscopies and see if from there she notices any significant changes

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MRI can often give a very good indication of Endo, but especially with the lower stages, laparoscopy is the only way to definitively diganose endometriosis, as the surgeon can literally see the endometriosis tissue in front of them. MRI is expensive and time consuming and when I was pushing for my diagnosis it wasn't a route my surgeon ever explored. After a 'normal' ultrasound a lap was suggested and I went for that. Endo found and removed.

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I had a laparoscopy which diagnosed stage 4 but they still needed an MRI to see where exactly it was attached to.

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I've never had a laparoscopy, just a few hysteroscopies, on my MRI it only showed the one nodule and every other test I've undergone has shown up as normal no endometriosis

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I have been lucky that I had access to a private gynea and could find someone who specialises in endo. She asks for specifics with the MRI scans within the private hospital she works in as a bog standard scan may not have shown it.

My gynea suspects that it has moved up to the diaphragm as keep getting chest pain at TOM. Had an MRI with chest clinic but gynea said it was clear but we wouldn’t see it on a normal scan she will double check when she does the next operation. Maybe have to zoom in further?

My gynea also works NHS at a Centre is excellence for endo. So next op is going to be through NHS (as some of her team don’t work privately)

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I work in the NHS myself and feel my case personally has been dealt with really well, I haven't had to wait months on end for tests or anything like that so I would say I've been really lucky with my care, I'm glad to hear it was clear for you, hopefully on further examination it remains clear for you, good luck with your op x

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Hi there - I had a laparoscopy over a year ago, have been confirmed stage 4 endometriosis, they fitted the coil and hoped for the best, I have been referred to a specialist hospital in Aberdeen which have taken an mri and I’m due to go back for surgery to remove the endometriosis, but there are a lot of risks and my endometriosis is in the sack of Douglas which is attaching my uterus to my bowel.

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Hi, so sorry to hear that! I can imagine that to be painful, I have only ever had the MRI and a number of hysteroscopies, my consultant seems to keep me on her books and has seen me monthly since July last year, they did offer me the coil but only due to having hyperplasia of the womb but I refused, good luck with your surgery x

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I was in hospital with heavy bleeding, I had to have 2 units of blood transfused after collapsing because I lost that much, that's what prompted them for the MRI to see what was causing the bleeding as this was my second bleed and much worse than the first, this is where they found the endometriotic nodule, my USS didn't show anything abnormal either, I have asked my consultant why I haven't had a lap and she's said it's not needed as they can feel my endometriosis on examination as she's the gynae professional I just take her word for it, position of my endo also makes it difficult for removal she's said unless i begin to suffer really bad she wouldn't reccomend removing it

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Hi purple0502, I have been diagnosed with stage 4 endo through MRI. I haven't had a lap yet due to the advice of my consultant due to very possible negative effect on fertility, which for me is my priority.

I agree with the other comments that the standard and best way to diagnose is through a lap. Even in my case, where you can see the endo is quite extensive (Endometriomas in ovaries, in pouch of douglas, nodules in bowel) you will not know the degree of the endo in its entirety without a lap. Having said that, as in my case, everyone is different. Depending on whether fertility is your priority, how your symptoms affect you, where your endo is etc a fertility specialist and/or BSGE endo consultant should be able to advise the best course of action i.e. lap or not for your needs

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Hi Nicki, fertility has been number 1 for me also, that's been my main focus throughout my whole journey, I'm quite lucky as my endo hasn't effected my ovaries or tubes as of yet, I am under fertility and I am hoping to start on clomid later this year depending on my next set of biopsy results, I am so sorry to hear about the severity of your endo! My consultants in both fertility and endo don't seem overly concerned for me to have a lap so I just leave it to them as they're the professionals in these things, I wish you all the luck in the world on your fertility journey x

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Thanks! I am under fertility now also and will be starting IVF later this year.

Wishing you the very best of luck in your journey too! X

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Praying it all goes well for you!💖 thank you x

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I have been diagnosed with endo without a lap - or an MRI! They did an internal scan and saw the endometriomas on my ovaries. This means I do not know how extensive it is but, with the help of my specialist, we decided not to go any further until more symptoms arise. However, this does mean it is always at the back of my mind and every pain is quite disconcerting. I also have to see my specialist every 6 months to monitor what is happening with more internal examinations. I don't know whether having a lap would be good or not - after all, sometimes ignorance is bliss!?

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I didn't have any symptoms until May last year when I thought I was having a miscarriage which just turned out to be heavy bleeding so i ended up going to hospital where on examination they found a lump and fast tracked me to be seen within a clinic in 2 weeks to rule out possible cancer, I was diagnosed with fibroids and was told the bleed was a one off and unlikely to happen again and was discharged, 5 weeks later I was back in only the bleeding was worse and I was kept in and transfused, sent home with a follow up MRI which confirmed the endometriotic nodule after another misdiagnosis of fibroids, but it weren't until my hysteroscopy that it was confirmed endometriosis, I am due my third hysteroscopy since september on the 7th of May to see if my cells have changed as the lining of my womb seems to be thickening, I think if you don't have symptoms don't worry but then in the same instance I had no symptoms and got to the final stage of endo, so maybe do worry? I don't know

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On my goodness. How horrendous for you. I can't believe so many people are misdiagnosed, it really makes you lose faith in the whole system. I don't have the heavy bleeds, just crippling pain about twice a month - normally at night, which means I am then not taken overly seriously by doctors. It was only when work called an ambulance one morning that anything happened!!

It's so hard to know what to do for the best isn't it. And when you start losing faith in the system you just don't know who to trust. I am just so happy I found this online community!

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Hi,

I was initially disgnosed with endo stage IV with a diagnostic laparoscopy and then I had a further laparoscopy for the excision.

The second time when it came back I was diagnosed with it via a MRI with contrast and then I had hysterectomy via laparoscopy/vaginal.

It has now come back for the third time round and this time has showed up in the transvaginal scan and now waiting for surgery again.

I think whether it shows or not in a ultrasound or MRI depends on where the endo is located, the radiologist'skills and the equipment used.

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That's what I was thinking, so sorry to hear it's came back, I think when they have an idea of what they're looking for they look at more angles and stuff, thanks for commenting, I also think it's a skill that can come overtime for specialists they know what to feel and look for, I hope your surgery goes well x

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Yes I strongly think that a skilled radiologist makes a difference. My MRI was done on the NHS and the radiologist reported that everything was fine. Based on my pain my gynae suspected the report being incorrect so I requested a copy of the MRI CD and got it reviewed privately by a radiologist skilled in identifying endo. Well... I had endo and 3 fibroids and all had been missed!

Thanks for your wishes x

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Hi,

Yes I had severe endo confirmed by scan. It was a very detailed scan that took about 30 mins and the doctor actually saw the fluids, severe adhesions, endo on the bowels as well. It is very possible but they have to know what they are looking for and be very skilled. They always say it can only he confirmed by surgery though , but if you have been told you have endo via scan, it is most likely because your symptoms are really severe so the endo is now infiltrating some organs.

It might be worth doing a few things to help your symptoms if you still have to wait for confirmation through surgery. Things like avoiding gluten/dairy/sugar/soy/alcohol/drinking or eating hot foods from plastics. Also gentle exercise, supplements (as many endo ladies seem to have low vitamin D, magnesium, zinc etc) and just try to guard your mind through all the pain and negativity.

Wish you all the best xx

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