Is it worth paying privately for a mri to diagnose Endometriosi

[Redandpinkstripes]

I'm awaiting a lap for possible Endo, but I have no idea of how long I will wait. I was originally told I had fibroids in Oct 22, causing my pelvic pain and associated issues. My scans, however, were clear. The consultant said she could feel 2 on exam.
I have seen a private consultant who has disagreed with this and says fibroids are not causing the issue.
I was in such a state at the appointment, so didn't get out what I wanted to say.
I'm now concerned as not sure who to believe. Is it worth me paying private for an mri/scans? What is the likely hold that endo will show? I live near Brighton, if you have any recommendations.
Thank you xx

My endometriosis was diagnosed during an vaginal ultrasound which was ostensibly to examine a defective c section scar.

It was very obvious on the scan that my ovary was stuck down and I was riddled with it. My only symptoms were secondary infertility, nausea and mid cycle bleeding. I didn’t have pain so endo had never been previously considered as the cause of my infertility.

I had the scan done privately on Harley Street in London and was referred there by my gynaecologist. After the scan I had surgery to remove it.

I hope you find some answers. X

No it isn't because an MRI can't diagnose it. You need a laparoscopy.

In your shoes I'd probably hold out for the laparoscopy as a) it's the most definitive means of diagnosis (or at least, that's the impression my consultant gave me) and b) assuming they find endometriosis, it will be treated then and there.

If you have an MRI it'll give you answers, but you'll still be no closer to treatment (unless you go private for it) and you'll have paid a fortune for an answer that you'll get with the laparoscopy anyway.

On the other hand, I suppose it all depends how likely you think it is that you have endometriosis vs a different issue. Plus, if the scan is affordable for you, you might feel that there's nothing to lose.

There is also a blood test https://www.ucsfhealth.org/conditions/endometriosis/diagnosis

Sadly I would say yes, you do need to go privately. But it's not an MRI you need. As pp said, it's a laparoscopy.

Women's healthcare is a total shit-show on the NHS.

Thank you for your responses. It's probably best to wait then, as don't want to pay 5k for the lap procedure.
I just wish I knew how long the wait was. You can't speak to anyone 😢

I would seriously consider going private as waiting times to see a gynae on the NHS are miles long, I have been reading recent reports stating that some women have been waiting a year already.

I thought of Endo when I was reading about your symptoms. Would not bother with scans of any sort, you need the lap op.

I was diagnosed with an MRI and am due to have extensive excision surgery tomorrow.

If you have extensive adhesions and organ deformities (i.e. severe endo) it can be seen on an MRI scan, saving you having a diagnostic laparoscopy.

The problem with having a diagnostic laparoscopy, especially with a non-endo specialist, is that if you have extensive involvement of other organs (e.g. bowel, bladder), or your endo is complex and messy, the surgeon will do a bit of lasering, close you up, and - if you’re lucky - arrange for a second surgery with a specialist team.

I have avoided this process by getting diagnosed on MRI (initially during a cancer scare) and having an excision surgery organised with a BSGE specialist centre via my husband’s work health insurance.

You also do not want any more surgery than is absolutely necessary either so a purely diagnostic lap op is not helpful.

As endometriosis becomes more chronic it can cause less pain to arise. It is when its in the early so called "mild" stages that pain really does feature.

The thing is, I'm happy to wait, as long as I can manage the pain. It had died down but is starting to niggle again. Nothing works, even Morphine 😢
I've always had pains in my left hand side but just assumed it was normal. The pain has ramped up significantly. Not sure what to think anymore. I actually don't cars what it is, as long as they can treat it!

I was asking a gynae friend about endo earlier as adult Dd is waiting for a consultant appt as the GP thinks she has endometriosis. Consultant said they no longer do any investigation, no lap, no mri, etc. they just offer oral contraception as if it’s endometriosis it should respond to this!! To be honest this seems bonkers and not right to me. Because not all endometriosis responds to contraceptive pill surely? I think the idea is try it and hopefully it works and if not them they might do further investigation. Seems like cut backs to me. I’d certainly prefer an mri over a lap.

Sorry, that was I’d prefer an mri if that was less invasive and good enough. But if a lap was gold standard it would be better to wait for that. I don’t know what to do for Dd, maybe we’ll have to pay private for a lap of the nhs locally have decided to stop offering them!

I think routine laps are up to 2 years wait in Scotland anyway. A myoovi can help with the pain.

Why does the private consultant think it’s endo? Did you broach an MRI with them? If it’s advanced / extensive it may well show up on an MRI. But if they didn’t suggest it maybe they think it’s not.

If it’s one sided pain you could have an ovarian cyst but they would usually show up on a transvaginal ultrasound

I have stage 4 endo and had private excision surgery in October. It is without doubt the best thing I've ever done, it's changed my life.

My endo didn't present on a transvaginal ultrasound (performed by the NHS) and only mildly on a second performed at a private clinic. I didn't accept the scan results and went to a private gynaecologist who referred me for the MRI, which then confirmed stage 4 "severe" endo. Interestingly that gynaecologist then referred me on to an endo specialist to perform the surgery and cautioned me to not allow and gyne to perform it as the effective rates and rate of recurrence is linked the experience and skill of your surgeon.

PPs are correct, the only effective method to diagnose is via a laparoscopy however depending on the nature of your endo it may show on the MRI. As mine was throughout my ovaries, uterus, bladder and bowel it was confirmed on the MRI.

Good luck OP, it's an awful condition and the route to diagnosis and treatment is hard. Harder than it should be! My surgeon was Mr Tariq Miskry for anyone looking for a recommendation.

My endometriosis was diagnosed on vaginal ultrasound, my left ovary had adhered to my pelvic wall which explained the absolute agony I had been in for years.

I had a diagnostic and therapeutic laparoscopy 3 months later (NHS but at a private hospital as it was during covid).

Initially the relief was amazing however 2 years later the pain has returned.

I was told I would likely require further surgery in the future. I didn't think it would be this quick. I found recovery from the op difficult and I wouldn't have wanted a purely diagnostic surgery to then have to do it all over again.

I had excision surgery yesterday afternoon for my (diagnosed now) Stage 4 endometriosis.

Despite surgical pain, I am now in less chronic pain and have a higher baseline energy level than pre-surgery. I noticed almost immediately (within hours of surgery) that my nagging back pain was gone.

It isn’t a casual surgery (better than a c-section so far, but that’s the comparison point), so I wouldn’t do it diagnostic only. Not sure how things will pan out as the days go on, but thought that might help.

The endo found was pretty much identical to what was seen on an endo-specific MRI.

I've had left sided pain for 20 years. All of the scans have always been clear. I've had ovarian scans and ca125 blood tests. Things have deteriorated and I know have bowel/bladder symptoms.
I really don't know what to do for the best. The wait times are hideous but I don't want to pay 5k for them to tell me they can't find anything.
I am down for a diagnostic Lap. Is this a bad thing?
Thank you so much for all of your messages xx

Best wishes for your recovery @Londonwriter

It's interesting to hear your immediate relief. I experienced similar but wasn't sure if it was a trick of the mind. Even in my difficult first week I knew I was different, like poison had been removed.

I would ensure that any laparoscopic surgery is not just purely diagnostic in nature because this would mean more laparoscopic type surgery.

I would be asking the consultant directly about surgical experience re endometriosis and their approach to such cases.

You do not want to have any more surgery than is absolutely necessary.

Something has been causing your symptoms and it is certainly in your interests to find out what it is. My guess is that a physical cause will be found by an otherwise skilled surgeon.

When I saw the photos of my laparoscopic type surgery a week or so post op I was horrified, my uterine cavity in particular was covered in endometriosis. No wonder I had been in pain all those years. Removal of this made me feel so much better in the days and weeks post surgery.

How do I get in contact with the consultant? Our gynae dept at the hospital and consultants secretaries are impossible to contact 😫