Advice on getting prompt diagnosis & treatment

Hi everyone, I'm new to the forum and have read through several posts but haven't seen much related to my questions but please feel free to direct me to old threads if you think there are useful ones I haven't found yet.

So, I've been having pretty classic endometriosis symptoms that have gotten progressively worse over the last three years since I stopped taking hormonal birth control & switched to a copper IUD (I suspect I had it before but was being 'treated' by the birth control). I finally got a GP to listen to me last summer and after regular blood results was sent for an ultrasound that revealed several cysts on my right and left ovaries. I then had to move and registered with a new GP who referred me to a gynaecologist, though I'm pretty sure I only saw a nurse of some kind. She ordered an MRI and a follow up after that in 8 weeks. I'm in increasing pain and keen to get treated quickly as my husband and I would like to have children (soon hopefully) and the cysts being rather large and on my ovaries seems to not be a good sign.

From the reading I've done I have some questions I'm hoping those with experience can help me with:

1) Diagnosis: I'm confused about the MRI being ordered. Is this standard? My understanding is they can only diagnose via laproscopy. Should I be asking for a laproscopy?

2) Surgery: The woman I saw at the gynaecologist said she is fairly sure its endometriosis and surgery will be necessary but gave no specifics. Is it always laproscopy or do they commonly use other surgery methods? Are there different types I should be aware of asking about?

and finally,

3) I've heard that you can sometimes be referred to an endometriosis specialist. Do I have to first be diagnosed in a particular way? Is this something that has to come from my GP or can it come from the gynaecologist? When and how can I ask for such a referral?

Many thanks to everyone for any information and for all the other great posts on here!!

4 Replies

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  • I don't know about MRI's as I've not had one, so I think this depends on the hospital and the specialist. However it is sometimes possible to see endo on ultrasound/MRI if carried out by a specialist who knows what they are looking for.

    Endo is pretty much always treated via laparoscopy BUT you need to be aware that this just refers to the keyhole method used (cut in your bellybutton, they blow you up with gas and then put in a camera and take a look around). There are then various things that may happen, so not all laps are the same. Sometimes it is just diagnostic, which means they look for the endo but do not treat any of it. Sometimes they will laser out the endo lesions (this generally only works if they are very small and the disease is mild). They can also cut out the endometriosis lesions (excision) - this is best for more advanced disease but can become quite major surgery. Often they won't know until they actually carry out the surgery exactly what they are going to be able to do.

    The specialists you see referred to are at bsge approved endometriosis centres. There's a list of them here.

    bsge.org.uk/endometriosis-c...

    Anyone can be referred to one of these centres. Your GP can do it if you tell them where you want to be referred to and who you want to see (though be aware that not all GP's are fully aware of these centres or what they do). However they were set up to only treat women with very severe endo that cannot be treated by a general gynae, so you may be referred back to general gynae for surgery. This doesn't mean you shouldn't ask to be seen at a centre first. Might be worth checking if you are already at one first though.

    If you are struggling with pain please see your GP as there are lots of different types of pain relief we can use and sometimes it's a case of trial and error to find one/a combination that helps.

  • 1. MRI before a lap is not uncommon ultrasound is also used. They can help inform the lap though they often do not show small endo. Lap is the gold standard in terms of diagnosis ie the most definitive diagnosis. It is best done in a specialist bsge centre as sometimes general gynaecologist miss it as it can be hard to spot.

    2. It depends where your endo (e.g. bowel) is but usually laparoscopy or less common and preferable laparotomy the equivalent open procedure. Not all endo is treated surgically and there are different types of surgery. This is a good overview of treatment options and what they entail. endometriosis.org/treatments/

    3. yes this is a bsge centre and are specialist endo multi disciplinary team focussed as endo can affect multiple areas and organs. They are the best place and some severe or organ affecting endo types eg rectal must only be treated in a bsge. Your gp can refer you directly. bsge.org.uk/centre/

  • You don't say if the cysts are endometriomas (endo of the ovary) or regular cysts. If endometriomas this would be an endo diagnosis and often suggests endo elsewhere. An MRI can show deep disease and can be helpful in locating it prior to a lap, but endo can be there and not show on MRI. It may still be useful though. All endo surgery should be done by laparoscopy - a laparotomy would only be used if laparoscopy wasn't possible, which would be a decision only a surgeon could take.

    Surgery is by ablation and/or excision depending on the stage and location. These days laser is usually used for both. There are other methods of ablation called diathermy (heat treatment) that are only suitable for mild disease and may only treat the surface.

    The situation for referral to specialist BSGE accredited endo centres depends on where in the UK you live and not anyone can be referred. In England we have NHS Choices and can see who we want so referral for undiagnosed endo can be easier, but referral for initial diagnosis is vague. The centres are for confirmed severe endo (stages 3/4/RV) and less severe cases that haven't responded to treatment. Also if symptoms suggesting severe disease are present this would be grounds for referral.

  • Thank you for all the responses, this is all very useful information. The mention of staging is particularly useful as no one has mentioned this to me before. From what I can tell looking online and at my ultrasound results I think I likely have at least moderate endo though I'll be sure to ask at my next appointment. Also very useful info on BSGE centres as I think there is one at the hospital where I'm seeing the gyno but I'm pretty sure I'm not actually being seen by them yet.

    One last question, I'm very concerned about fertility and given what the nurse said at my last visit and my GP before I have reason to believe this could be a problem due to my endo. I'm concerned that leaving treatment to the NHS timeline may diminish my chances of conceiving naturally if my endo gets worse while I wait for surgery. I know endo and fertility is very difficult area, but does anyone have experience or advice on this? Or where I might find estimates of how much I'd be looking at paying if I sought private treatment? I'm not sure it'd even be an option but if it saves time and expense of fertility treatments later....

    Thanks again for all the helpful feedback!!!

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