I have recently been diagnosed with deep infiltrating endometriosis via an internal scan, my bowel and ovaries have merged together and my bladder is also becoming affected. Obviously I'm shit scared of this new diagnosis and trying to come to terms with things.
My question at the moment is how have people prepared themselves for their endometriosis specialist scans? I have one in 2 weeks time, they've advised it will take 45-60 minutes and I'm so scared as I can barely tolerate 10 minutes without crying out in pain. I will not be having any anesthesia for this as us women are such warriors we have to deal with all these things no matter the pain it seems...
Any advise appreciated
Thanks so much ☺️
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moodeng
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45 mins does seems excessive for an internal scan without any anaesthetic. What does the scan involve? Is it an MRI scan or something internal like an ultrasound or laparoscopy?
Did they not mean the full appointment including consultation perhaps before and after will be 45 mins all round?
Hopefully you aren’t lying there 45 mins being poked and prodded 😪
I have queried this but it is 45 minutes of internal and they’ve said I can have a couple breaks inbetween if it’s too painful 😣😣 it’s to prep for surgery I believe… yet to have a surgery date yet but have been informed I’ll need 1 or 2 surgeries in the very near future x
Every doctor/surgeon is different so everyone’s experiences are different. I don’t know why they need to do more scans if they have already diagnosed you with endo.
For me personally nothing was detected on MRI or ultrasound and it wasn’t until I had a laparoscopy that they found the endo. So anything before was pretty useless.
Nevertheless I hope it all goes well and if it is too much you have to let them know. Good luck!
Hey lovely, my internal scan shows similar. But I haven't heard of a 45 minute scan before. I have a second scan on weds next week (just another internal ultrasound- and honestly I think its just a tick box to appease me that I'm "being seen" and things are "going forward" where they definitely arent). Have you got a consultant appointment with this scan? That sounds incredibly painful so I hope it isn't just 45 minutes of prodding you!
So it is definitely 45 minutes of prodding ☹️ I've called the department to double check and they have advised I can take a couple breaks in-between. It's a very in depth scan pre-surgery (which I have yet to have dates for) with an endometriosis specialist. My previous scans have been by sonographers who do not specialise in the condition.
Is it a mapping scan? I believe I’ve had one of those before and it was about 45 mins long. From what I remember (been a fair few years) I was able to stop for a moment when it got a bit too much and my consultant was as gentle as he could be during it
So a mapping scan is typically done by a specialist as they know better what they’re looking for. It’s essentially a more in depth and longer tv ultrasound. They look at everything going on in the pelvis, finding what triggerd pain and looking more closely at it.
Can you ask for an MRI instead? I have the same diagnosis as you (deep infiltrating, and involving bowel) had surgery in January, and never had an internal exam. Only an ultrasound on tummy and then an MRI before surgery. I was originally sent for an internal ultrasound but I rang up and said I would rather it was external, because I knew it would be painful. An MRI would need to be sent for by your GP or consultant. Definitely better! No need to go through something painful if you don't have to. Hope you get sorted x
Hi I have recently been diagnosed with DIE following an MRI. I have now been told I need a diagnostic laparoscopy before any treatment. Did you have to have a diagnostic lap before any surgical treatment?
No, it was all done at the same time for me. If they know it's DIE, then I wonder why they need more confirmation. Maybe to prep for surgery or something. I would ask if u can get all at same time.
I know I'm really confused by it, I've been told I have endo on the uterosacral ligament and on the rectovaginal septum. As an urgent patient I have to wait until April or may for pre op assessment and then up to a year for the diagnostic lap before any treatment is planned it's so frustrating. I've done everything that has been asked of me, I've lost weight changed my diet had the Mirena fitted the only thing I'm not prepared to try is the Prostap because the impact on my weight which I have struggled with. It's such a horrible waiting game. How have you been since your surgery, I hope it has improved your symptoms.
That's all v frustrating. I went privately so I didn't have to wait, but can imagine how hard it is to not know when you'll be seen for surgery. To be honest, I am a bit of a weird case because I didn't have major symptoms even though my Endo was extremely severe, stage 4. I had it everywhere and it was urgent because it was in my bowel, And near the nerves in my leg.
Unfortunately for me the Endo has grown back somewhat since the surgery in January, partly I think because I delayed taking any medication For a few months after surgery. I was silly. But in general doing better. I had an MRI in July and showed quite a bit back. I'm getting a follow-up MRI in December so I'm hoping it hasn't progressed anymore Now that I'm on hormonal treatment. I was on Dienogest originally and now on the mini pill. The lesson For me is I should have just gone on medication as soon as I was told to, instead of second-guessing the consultant! My consultant suggested the next level of treatment will be Marina with dienogest. Not sure if that's the same thing you're mentioning As drugs can have different names...One of the side effects is supposed to be weight gain but I was on it from May to October and didn't gain any weight. Maybe depends on the individual
I had endometriomas removed in 2014 when I lived in India was on ocp got married and got pregnant delivered in may 2017 in USA had Mirena fitted in jul 2017 removed Mirena in dec 2022 switched to ocp until Jan 2024 got breast fibroadenoma endo symptoms returned all in April flew back to India in may took ultrasound mri as pain wasn’t manageable with pills it showed endo in pouch of Douglas, uterosacral ligaments, fibroids flew from Chennai to Mumbai in June to get surgery from top endometriosis specialist discharged within 24hrs I wish He took out ovaries and uterus. He does 15 such uterine surgeries in a day. We wanted to try for 2nd child he doesn’t put patients in suppression medication after surgery so symptoms returned after every period with pelvic infection and inflammation I came to USA in aug next day after arrival went to UCSD ER got STAT referral to ob/Gyn got a good Gyn surgeon due to an appointment cancelation was on antibiotics and Lupron just a week before got Mirena fitted. These hormones make my breasts sore never had this when I got Mirena for the previous 5yrs. Ocps didn’t help at all I got serious side effects like breast fibroids and fibrocystic breasts from ocp. Next year I am planning to go during summer vacation and get the uterus and ovaries removed along with sub cm endo seen in recent mri. It works very fast in India the doctor who did surgery for me is called king of endometriosis surgery he gets referral now from other Asian countries. DM me if anyone needs more details. Sending lots of love and hugs for those who are fighting and waiting for appointments.
They have advised it has to be internal to get the best idea of what needs to take place when I go in for my surgery, the external scan wouldn't give a good enough result in preparation apparently. Such scary times x
Other option apart from MRI could be a diagnostic lap. You'd be knocked out. Other suggestion If they're set on doing this internal exam, is to ask can you have a general anesthetic for it. I spoke to my GP about getting the marina coil and she was happy to refer me to get a general anesthetic to get it put in, because of my Endo. I told her it was painful to put a tampon in, so she was easily convinced. And it would be on NHS. There are ways around these things, So I wouldn't give up yet!
I had endless painful internal scans with someone on the nhs and then when I had a private specialist scan it was almost completely painless and much longer like this, so it definitely depends on the skill of the sonographer. So there’s every chance they will be skilled at causing minimal pain. I was so worried about mine I cried the night before and it was all over nothing. Worth taking painkillers 20 mins or so before just incase too. Really hope it’s a good one for you.
I believe there are benefits to both the ultrasound and the MRI providing the scanner is skilled.
Thank you so much for the reassurance. They have told me this should be much less painful despite how long it will take, as it is an endo specialist doing my scan and not just a midwifery sonographer.
I take codeine for my pain anyways so will definitely take that prior to the internal in hopes that it eases the pain.
I had to reply to this again as I hadn't heard of one of these scans until you posted and mentioned I was having a normal scan. I had exactly this today! It was done by an endometriosis specialist with a trainee. It lasted about an hour and they covered every part of my insides they could reach. She has diagnosed me with adenomyosis on the spot.
I also cried for 40 minutes out of the hour due to the pain. The student was so upset that she was hurting me bless her but it wasn't her fault!
I just wanted to check in and see how you are after yours?
Omg hi thank you so much for reaching out again about this 😭
My scan is a week tomorrow on the 5th, I’m so so nervous, but it’s reassuring to hear someone else has gone through this too as some other responses were confusing me abit!
I’m so sorry it was painful, I know it will be the same for me 💔 Did you take pain killers before? Can you give me any advice to prepare beforehand?
Stupidly I did not take pain killers before-but what a great idea! I did take my portable heat pouch thing because the cramps during and after were honestly horrific.
I made sure I told them my concerns before hand and honestly they were so lovely, when I started crying the one who wasn't crying came round to hold my hand and continually asked me if I was okay and wanted to continue. I said yes every time, not only because do more sonographers need to be trained in this and I know it will help others but also because I want some answers for myself!
Just sending all of the love and I hope it goes well for you and it isn't sore! Plenty of deep breaths, especially when they're doing a 'deep dive' so to speak to help relax the muscles!
I went for my 45 minute internal scan, cried the whole way through but they were much gentler than previous sonographers as this doctor specialises in endo.
She also diagnosed me with adenomyosis during, and cysts on my ovaries. I’m now awaiting consultation with a surgeon prior the urgent surgery.
Bumblebee11 seems we had a very similar experience so thank you for reaching out prior ❤️🩹
Sending love to all you lovely ladies over this Xmas period (and all the time!!) but now more so as everyone is expected to be so happy this time of year when we can’t help being in pain.
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