Terrified for scan: EDIT: Had my scan now... - Endometriosis UK

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Terrified for scan

xximilixx profile image
18 Replies

EDIT: Had my scan now but I'm going to be making another post about it...

Currently going through the process of diagnosis, I've had the blood tests, internal swabs (which was a horrendous experience, never had anything done like this before which I told the nurse and she was blunt and really hurt me)

On Tuesday i'll be having the ultra-sound. Being quite anxious about most situations i've researched it, looked for stuff on youtube, trying to put my mind at rest that it won't be as horrible as my last appointment was. Knowing that an operation is the only real way to diagnose endo, going through all these other (painful) examinations is just putting me so on edge, getting the swabs done alone almost had me in tears with the pain, I'm assuming an internal ultrasound isn't going to be any better.

Can anyone tell me their experiences with having ultra-sounds, and then how the diagnosis process progressed for you from here?

Feeling very lost and alone with the lack of the whole process being explained along the way, especially by the staff who are carrying it all out, felt very rushed and hasn't left me in a good place.

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xximilixx
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18 Replies
Jessjesssophia profile image
Jessjesssophia

Hey, how are you? I'm so sorry you're having such a time of it. For me I went through a similar experience getting diagnosed. After the swabs I had an ultrasound where they checked my womb and kidneys. They did an internal examination with the ultrasound probe. It's a bit uncomfortable but if you're worried about pain maybe consider taking some Kalms or Rescue Remedy? I also chew gum to take my mind off things. As you said the only sure way to diagnose endo is via laparoscopy but I think it's really standard to do these checks first. After my ultrasound I got scheduled in for a laparoscopy but out was a really long waiting time (from memory for the first one it might've been about 5 months). Personally, heat pads, ibuprofen, getting my partner to rub my tummy and reiki really help and I've been fitted with the mirena coil. Hope this helps a bit but if you've got any questions this forum is a lifesaver for a rant & helped me realise there are loads of other fab supportive ladies in a similar position with this horrible illness. Sending you lots of love x

littlebrownbird profile image
littlebrownbird

I'm sorry to hear you've had a poor experience. Some staff couldn't be nice and then you come across the one who is insensitive and careless in their treatment​ of you.

I've had three internal ultrasound scans. It's less painful than a speculum being inserted but be prepared for some discomfort when they move it around to get a better view.

If necessary, ask for a chaperone so that you have someone to support you during the process.

I hope it's​ a more positive experience for you

My first internal ius (which was private) resulted in me being diagnosed with adenomyosis and identified the position of a couple of huge fibroids and a tilted womb. I was fitted with a Mirena IUS (I'm on my third one and for me it's been brilliant). My treatment beyond that was back on the NHS.

To be honest, I find the best approach is to take the opportunity to ask lots of questions, as information isn't usually offered to you and if it helps write your questions down so you don't forget what you want to ask. Sounds a bit literal/obvious but when you're anxious, you don't always remember what you wanted to ask.

I hope that helps x

Make sure you take some painkilllers half an hour before. One nurse also let me do the initial insertion of the probe, which helped. Take time to explain to them that you are scared and you need them to take it slowly. Hopefully you will get a more sympathetic nurse!

xximilixx profile image
xximilixx in reply to Lizzielizzielizzie

That was nice of her. I told the other nurse that I was scared the speculum would hurt and she said "it'll be just like when you have sex" to which I replied "yeah, but that hurts" and as much as I'm glad she got it over with quickly it did hurt me quite a bit

Lizzielizzielizzie profile image
Lizzielizzielizzie in reply to xximilixx

That nurse was incredibly insensitive. A speculum insertion from someone you don't know is nothing like sex with someone you love, plus she clearly has no idea that sex is painful for some of us. I dread to think what emotional trauma she might cause to someone with a history of sexual abuse/rape. Personally I would make a complaint about her manner because I'd be worried about other patients experiencing this insensitivity, but then, I am a bit of a complainer... I don't believe in putting up and shutting up!

Whilst I do agree with the person below saying about taking a Kalms or similar, I do think some people don't understand that it can be physically painful because of your gynaecology, not just because you are tense. I'm now pretty used to internal ultrasounds but I still take painkillers every time because it is physically painful without them. It's unfortunate but true. However, the scans are necessary so we do it.

Lizzielizzielizzie profile image
Lizzielizzielizzie in reply to Lizzielizzielizzie

Also, for future reference (e.g. When you go for a smear or similar), they make speculums in different sizes. I now always check with them that they are using as small a speculum as possible and explain that I don't just feel discomfort, I feel actual pain.

xximilixx profile image
xximilixx in reply to Lizzielizzielizzie

I'm quite the complainer myself! At any opportunity I can get. But I'm just so tired and exhausted with the process already even though it's only just begun, I can't even remember her name to do so. She didn't even explain to me what a speculum was so it's a good job I've educated myself. I didn't know they came in different sizes I'll remember that, I was expecting there to be lube on it or something but she just put it in without much warning.

She was also quite annoyed at me for not knowing where to put my legs / how to place them. When she told me to stop my knees I did it wrong and she ended up pushing them herself.

Lizzielizzielizzie profile image
Lizzielizzielizzie in reply to xximilixx

I dislike her so much on your behalf. Maybe take someone with you next time... I took my mum after a bad experience and felt much more confident with her there xx

Katarzyna profile image
Katarzyna

I was in a similar situation several years ago. After some horrific outpatient gynae procedures just the thought of a trans-vaginal ultra-sound was a nightmare. Fortunately I found a woman doctor trained in psycho-sexual medicine, asked my GP for a small amount of diazepam, and the procedure was fine. Please do tell the person who does the scan about your previous experience. Wishing you the very best.

KEndo16 profile image
KEndo16

Hello, you're not alone. The other advice given is great, write questions down, take painkillers. My advice would be this:

Remind yourself you're doing this to keep healthy, to retain your independence and choice.

During any procedure (even the dentist which I dislike!) I wear a ring or other piece of jewellery that I can fiddle with and focus on.

This is the best bit. Choose a reward for yourself if you get through the procedure (and you WILL get through it). Choose something nice like a hot chocolate, bunch of flowers, walk in the countryside, a new pair of shoes. Focus on your reward. You'll feel happier when it is over and focussing on the happy feelings your reward will bring might distract you.

Stay strong.

Kathryn x

xximilixx profile image
xximilixx in reply to KEndo16

Thank you for this x

KEndo16 profile image
KEndo16 in reply to xximilixx

I wanted you to know even though you're terrified, you will get through it. You'll be a better, more informed and stronger person. X

NW248 profile image
NW248

The internal ultrasound should be less uncomfortable that a swab, because with swabs they have to open you up enough to see where they are taking the swab from. The probe for the internal ultrasound is only about 1.5cm wide (I think, I didn't get out a ruler when I had mine).

I would think that relaxing tablets such as Kalms should be more useful than painkillers. Also, there is a pressure point called Shenmen or PE6 on the wrist (it has an equivalent on the ear lobe) that helps with anxiety, and Hegu or LI4 on the hand that helps with stress and pain (not to be used in pregnancy). If you get the travel wristbands designed for travel sickness, they work just as well for anxiety if placed on Shenmen point. Look up pictures on the internet.

An ultrasound won't usually see endo, so don't let them fob you off for years with "Nothing wrong with you" as they did with me if it shows nothing. I had 6 of them. An MRI with the more modern machines should show endo, so push for one of them rather than a lap. It seems that many GP's and gynaes don't know this, they're a bit behind the times. Sometimes a lap doesn't see endo because it is hiding in places that they don't go.

xximilixx profile image
xximilixx in reply to NW248

Thank you for this! It was really useful x

Claireyboots profile image
Claireyboots

I've had quite a lot of internal scans due to endo and ovarian cysts. The process has always been the same for me- external scan with a full bladder, tummy first then each side so they can check kidneys. Then get to go to the loo to empty bladder and then have internal scan.

I have always been so impressed with the ladies who've done my scans. Never had any pain from it, just slight discomfort when they try to get just the right angle. The probe has lube on so it's always gone in really easily, and they are obviously experts as it's in before u know it!

I hope yours is the same experience as mine and it's over before u know it. Once this is done hopefully u will be given a plan of action that can help u deal with what's going on. Xxxx

xximilixx profile image
xximilixx in reply to Claireyboots

Hopefully mine goes smoothly! I was waiting a long time for my test results to be sent to me, got fed up of waiting and went into my doctors to ask and they just printed them off for me at reception with no explanation to what any of it meant. Hoping after this I can sit down with someone and talk it through although I'm finding the internet to be more helpful!

Loulourice1982 profile image
Loulourice1982

OK I will be completely honest I have had all the tests you have had and they all proved some discomfort . my nurse at my gp was amazing. I severed sexual abuse explained all this to her and she was amazing. The worst one I had was the internal scan at hospital and I believe this was due to her personally. I explained my past to which she said you will have to get over that if you want a baby!!!!! I went on to have a MRI scan which showed severe endo. Like one of the other ladies said do not let them fob you off . the best advice I can give you is be honest explain your fears . goods luck

Devils_Advocate profile image
Devils_Advocate

Hi, I am sorry to hear that you are having such a difficult time. You always meet some dreadful people like in any profession - I would complain.

I have had several internal ultrasounds, and they were uncomfortable but not unbearable. My last one was not pleasant as I have had significant surgery so have adhesions/scar tissue.

But I have been fortunate to have lovely ultrasound technicians. I have explained to them beforehand that I have endo, have had surgery and I generally find them unpleasant. They have been gentle and reassuring - asking me about the pain etc.

Like many others said I would take painkillers beforehand. I would also take someone with you for support.

In relation to diagnosis - my ultrasound diagnosed polycystic ovary syndrome. They tried to fob me off after that, but I pushed for a laparoscopy (which then confirmed my stage 4 endo). I have had loads of tests colonoscopy, sigmoidoscopy, endoscopy, MRI, countless blood tests etc. I found it so frustrating but it did rule out other conditions.

I hope it goes OK

D x

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