Everything but laporoscopy: Hi guys, This... - Endometriosis UK

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Everything but laporoscopy

Jmaia99
Jmaia99
30 Replies

Hi guys,

This is my first time posting on here! Basically I have all the symptoms of endo and it’s just getting worse and more unbearable. However, I’m terrified of surgery and the thought of a negative laporoscopy is honestly the worst thing ever! So far I have only had transvaginal ultra sounds which have shown as normal but I want to go through as many non- surgical ways of finding something that suggests it’s endometriosis before getting surgery. If I have some kind of scan and it shown an abnormality then I would be so much more up for getting the laporoscopy as I feel it would be worth it! So what else can I ask for before surgery? My main issues are bowel, period and digestion related, would a colonoscopy, gastroscopy, MRI etc be useful??

30 Replies
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Endocapades

Hi there. To be honest, the procedures will only really be useful to rule out or in other issues. It's very rare for colon/gastro/cyst oscopies to show endo. An mri if interpreted by the right person may show up severe or advanced disease. Your best bet is the lap but definitely with a specialist who as at least a special interest in endo. You won't currently qualify for an endo centre also known as a bsge centre. But you do have the right to be seen by someone with a special interest in it. A negative lap, if done by the right person, would be difficult as you would not have a diagnosis but it would also be a major bonus to not have endo. It would leave you free to hopefully investigate what is actually happening and you could avoid years of being treated innapropriately with hormones that can ravage your system. I hope you get answers. It's definitely useful to have the other tests but I would be just aware that they are unlikely to show endometriosis (aside from an mri if there is very severe disease)

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Jmaia99
Jmaia99
in reply to Endocapades

Thank you so much! I’m going to book another appointment with my gynaecologist and talk to him about all this.

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Char411

Hi,

I had multiple scans, a colonoscopy, an endoscopy and an MRI due my my symptoms being bowel and digestive related and all were normal.

The only way endo can be confirmed is by a laparoscopy (mine was found in multiple places during surgery)

To be honest I found the tests more stressful than the surgery, especially the digestive tests, as you’re awake and they aren’t the nicest of procedures.

I think the other tests are more a process of elimination as opposed to tests for confirming endometriosis.

Wishing you all the best xx

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Jmaia99
Jmaia99
in reply to Char411

Yeah! Honestly I just wanted to rule out everything else before having surgery but I guess as you said, the local anaesthetic could be more stressful! Thanks so much, you’ve given me more confidence to go ahead with seeking out a laporoscopy x

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Char411
Char411
in reply to Jmaia99

It will not be as bad as you think I promise. Good luck x

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NW248

The only non-surgery diagnosis technique would be an MRI, the modern machines are reasonably good at picking it up if the radiographer is trained to find it. It is not certain that it will show it, but likewise a lap done by a standard gynae can miss it too. Don't let them fob you off and tell you that an ultrasound showing nothing proves it isn't gynae related as they did with me, for years.

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farahziya

The only formal way to diagnose endo is a laparoscopy as it needs to be visibly seen and the extent plus impact on organs viewed.

You can have detailed MRIs however these often will not show endo, if they do it's usually the scar tissue it creates not the active endo. It can however help rule out things like fibroids and PCOS.

There are other tests such as colonscopies, hysteroscopies, but you're awake for all those whereas in a lap they can actually do all that while you're under.

My suggestion is to check with your GP and be referred to an endometriosis specialist so they can talk you through what they would do and the process / procedures. Check out the website NICE Endometriosis (google it) for info on the pathway to diagnosis. Also have a look at the Endometriosis UK website for diagnosis information, there may be some other ideas on there endometriosis-uk.org/inform...

x

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Jmaia99
Jmaia99
in reply to farahziya

Thank you so much! I will check out some other options and speak to my gynae soon

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Pinkyy
Pinkyy
in reply to farahziya

Hi sorry to intrude on your converstation! My gynocologist has told me they dont perform laparoscopy anymore and because of this has told me i dont have endo because one hormone treatment didnt help my symptoms 4 months before he told me i did i have endo

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Jmaia99
Jmaia99
in reply to Pinkyy

What really?? That’s insane, I’m seeing a private gynaecologist at the moment because I could deal with the slowness of going through NHS... hopefully I’ll get some answers :/

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Pinkyy
Pinkyy
in reply to Jmaia99

Sorry to ask and its fine if you dont want to answear but how much was it to go private? Im thinking about doing this too but unsure of the cost!

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Jmaia99
Jmaia99
in reply to Pinkyy

I think consultations are £250 or so but it was so nice to not be rushed for time and to be properly listened to and be able to go through absolutely everything. In my consultation, he decided to do a transvaginal ultrasound too which was over £1000 but showed nothing which was annoying but I guess it ruled out cysts and things.... I’m not sure how much a lap is privately but I would defo recommend just going for a consultation with a private gynae as it’s a good way to know where to go forward

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farahziya
farahziya
in reply to Pinkyy

I've responded to a lovely lady about the same query:

healthunlocked.com/endometr...

You don't have to go all private as most endo specialists also work on the NHS so you could see one for the initial consultation and pay the £200 to £250, then go on their NHS waiting list, that way you know your care and operation will be with them x

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Jmaia99
Jmaia99
in reply to farahziya

Yes exactly, I just went for a second opinion tbh and to be able to go through everything that was going on and it was really helpful

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Moon_maiden
Moon_maiden
in reply to Pinkyy

I went private just before Christmas, it was £200 well spent, have follow up next week for £120. The first time he diagnosed as Endometriosis, with laparoscopy and Helica if it’s there. Option of NHS or private. Likely go private, quicker and you know who’s going to do the surgery, just need to ask questions first.

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farahziya
farahziya
in reply to Pinkyy

That's crazy! Here's the NICE pathway the NHS doctors should be following for diagnosis. It does mention laparoscopy and that's actually the only formal diagnosis recognised in the UK.

nice.org.uk/guidance/ng73

So at the moment if you've not had that laparoscopy by an endo specialist you are suspected of having endometriosis but will not know the stage, extent or whether it's perforated organs.

Any surgery costs the NHS and general gynae are pushed to give hormones rather than treat the actual cause so you'll keep coming back, an endo specialist will be more willing to consider a lap as they know how to spot and remove endo, thus treating the source and providing longer term relief.

It's one of those things where we have to read up and push for what we want with this!!

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Jmaia99
Jmaia99
in reply to farahziya

Yes I think I’m going to go back to my gynae (who so far has given me hormones and IBS tablets which made no difference) and talk to him about being referee to an endo specialist to talk about a possible lap

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Afrohair

Thing is while your waiting to rule it out not using surgery your endo will be getting worse I’ve waited 3 months for referall to gynaecologist another month for an ultrasound another 3 will be for mri then in end I should be offered a lap and I’ve got signs of severe disease jump off the chance of being offered a lap mine are ruling out everything because they said a lap is expensive . your better going straight for lap which WILL find endo with the right specialist

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farahziya
farahziya
in reply to Afrohair

don't forget to push for that lap! sometimes they just say there's nothing they can do, you know your body!

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Afrohair
Afrohair
in reply to farahziya

That’s what I’m trying to do my gyn is so dismissive though he has already said a lap is expensive but I’ve got a private consultation end of month and general gyn on the 13th Im either hoping he writes a letter of referral to my doctor to put on his nhs list or hope I can afford the surgery or part of my surgery they might say I need two cause I know it’s on my bowl and not got diagnosis yet it’s so stressful

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farahziya
farahziya
in reply to Afrohair

If you're going private discuss the bowel and an additional surgeon. My private specialist worked alongside a colorectal specialist so they talked about my case before my lap but he'd already done a lap with excision everwhere else so could see it on the bowel. I'm not sure they'll have two surgeons if they're only suspecting endo on your bowel, it's worth asking though.

Check out my post above regarding fees and how to sort out finances for private treatment, there are options :)

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Afrohair
Afrohair
in reply to farahziya

Thankyou for your help this is a worry of mine as I suspect I would prob need 2 surgery’s which I can’t afford so may have 1 private 1 nhs

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Afrohair
Afrohair
in reply to farahziya

Can I just ask how do I get my gp notes do I need these for a private appointment

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farahziya
farahziya
in reply to Afrohair

When you book your private appointment just go to your GP and say you'd like to be referred to x consultant at x centre, quite often you can hand in the details at your GP reception and they'll do the work. Your GP will then send your notes directly to your private consultant. It's usually stuff like medication, treatment, symptoms. But your private consultant will start from the beginning so you may find it useful to note everything down symptom and pain wise, including a month a page of those things if you can. Also note how it affects you mentally, and what you'd like done about it - they will ask, that's the difference they work with you. If you have a friend / partner bring them in as it's an extra set of ears; my hubby said it was really useful as the consultant also explained things to him, and what he could do to help including if he'd noticed things.

I've posted this about fees:

healthunlocked.com/endometr...

There's some info in there about finance options for hospitals and insurance so it's worth a read!

x

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Afrohair
Afrohair
in reply to farahziya

Also would I be ok to combine nhs with a private operation as I know I can’t afford two operations

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farahziya
farahziya
in reply to Afrohair

I think you can, sometimes the private consultant also has an NHS waiting list for operations so it's probably best to ask him / her when you have your appointment.

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Jmaia99
Jmaia99
in reply to Afrohair

That’s very true; thanks so much! This has really changed how I feel about it tbh!

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StefaniaJW

You should get an ultrasound done by an endo specialist (a regular gynaecologist cannot see endometriosis through an ultrasound) and get an MRI done (by an radiologist specialised in endometriosis). Then go for an extremely skilled and experienced endometriosis excision surgeon for surgery as the chances of getting a negative laparoscopy are close to zero (close because there is always a slight chance you might not have endometriosis) because they are trained to recognize all types of endometriotic lesions.

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Gemmagstar

Hi this is my first time posting on here. I had my diagnosis about 10yrs ago now and have had 2 laps to remove Endo lesions. Just wanted to reassure you that the op is nothing to worry about. Also it looks like there will be a diagnosing alternative in the near future, through a simple blood test...check out this story I came across the other day itv.com/news/2019-04-02/new...

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farahziya

The leading Endometriosis UK charity posted this in response to any articles about the blood tests:

Just for your information.

endometriosis-uk.org/news/f...

It looks like a work in progress for the moment so yeah near future, possibly x

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