I chased my GP up today and had a call from the hospital this afternoon saying the first stage in investigating is a pelvic and transvaginal ultrasound, I now have this booked in for next Friday, does anyone have any advice or help with what to expect or questions I should be asking?
Thank you xx
Hi i was diagnosed from doing my first transvaginal scan. Keep calm, the TV scan isn't comfortable but it picks up better view than a ultrasound although MRI is better than both those scans.
Whilst the sonographer checks you can ask questions like does my ovary shows any sign of endo or pcos. You can also tell them if they Don't ask you where your getting the pains.
You do need to drink 1litre of water for ultrasound which they will then tell you to empty your bladder for the TV scan.
Good luck. Any questions please feel free to ask.
Morning,
My transvaginal scan didn't show up anything at all - even though I was experiencing horrible pains at the time. The sonographer even said that all my parts looked "very healthy."
I know the previous poster said you'd need a full bladder, but I was told the exact opposite for mine - best double check whatever literature they've sent you & give them a call if unsure. Maybe it depends how mean they're feeling 😅!
You can certainly ask if they think they can see any endometriosis, but it's likely that if you have to ask, then they're not experienced in finding it in the first place. You can point to exactly where your abdomen hurts so they can focus the probe around that area, if it's specific.
Endo can only be accurately diagnosed with a laparoscopy but can sometimes be seen on an MRI. It's rare (& very lucky) that a form of ultrasound picks it up.
It takes an experienced professional to interpret scan results & in some cases, endo is even missed during a laparoscopy because the surgeon is either inexperienced or doesn't look in all of the likely places. (in Australia, they take a biopsy of the endometrium in the womb to diagnose endo, which is far less invasive. But UK has a long way to go before we catch up).
It's likely that you'll end up going in circles with general gynaecology, if nothing shows on your scan, but keep pushing for more tests and answers. Don't give up!
I recommend looking for a BSGE that's local to you because they know what they're doing & talking about - ask your GP to refer you to them. Search on Google for local BSGE centres.
That's where I'm up to on my journey right now. The pain is very real but the care & treatment isn't. I hope you have more success than I have so far xx
Just to add that its possible the sonographer won't tell you anything - I had many scans both privately and on the NHS. In the private scans I get a full commentary, with the sonographer freezing the picture to point out features of interest (it's harder to ooh and ahhh at an ovary, than it is for a baby, but I did my best to oblige!). In the NHS scan the experience has varied, I've had one sonographer who was happy to answer questions, but I've had several who are evasive or even obstructive saying 'We will send the results to your GP within 2 weeks, and they will tell you what you need to know'. (and she wouldn't budge even when I explained that I needed to know if the abscess was resolved or if I needed to pick up another course of antibiotics before the 2 weeks....)
The letters I've had have said arrive with full bladder. They do the abdominal scan with full bladder then you go for a wee and they do the TV scan. Abdominal scans you can see better with a full bladder, TV scans it makes no difference but they are uncomfortable with a full bladder so you'd want an emptyish bladder for those
Thank you so much for all your responses this is so helpful! I’ve been told to arrive with a full bladder but not a lot else! Fully expecting to have to push for more tests for anything endo related but do you know if they will speak to me regarding cysts if they see anything? I’ve just been prescribed mefenamic acid alongside prescribed cocodamol for the pain so today is day one on seeing if that will help me with the pain at all, have any of you tried any pain meds that’s actually been helpful for the pain? Xx
I had an ultrasound initially to do a scan of bladder and kidneys. This was because of frequency, she told me they were ok, but enlarged uterus and three fibroids. This started the whole process of diagnosis of endo. There was no hint of it on ultrasound, it’s not a diagnosis tool for endo, but will show/rule out other things. Did have another ultrasound during covid to check on other things. This showed the same things. Different person, she told me what she could see.
If you sign up to see some of your records online, you’ll see these in results, and much quicker.
If you want to see what it looks like online I can post.
Thank you so much for this, I didn’t realise you could sign up to see records online, do you have a link for this or is this something I should ask for at my appointment?
Would be really helpful if you wouldn’t mind posting online? I’m trying to make sure I’m fully prepared to ask as many questions and get as much out of my appointments as possible, I’ve been waiting a while to get the referral and am struggling so much with pain and fatigue at the moment so just want to know more about what’s going on and how to manage it! You’ve been so helpful thank you so much xx
For GP records ask at reception, they’ll give you a form, some have the form on their website and you can email with ID. You won’t see everything, but I see test results, a summary of conditions, consultations and medication. They don’t show the notes of consultations, but you can request these as well. It’s now free of charge for anything stored electronically. For hospital these are through their website, there is an online form and you upload ID. You’ll need your NHS or hospital number. Be prepared that with full notes you may not like what may have been written. I’ve whinged a couple of times re referral letters.
If it was me I’d make sure the referral had been received, I did this during covid because a referral hadn’t as the surgery sent it to an obsolete email address rather than through the system. That was for an ultrasound.
I’ll show an example shortly.
This was an ultrasound in November, not much info, but no mention of endo.
'Both kidneys appear normal in size, shape and texture. The renal outlines are smooth and cortical reflectivity is normal. No calculi or masses seen. There is no upper tract dilation. Views of the filled bladder show a normlal symetrical shape and emptying is complete most micturition.
The anteverted uterus is bulky in size and shape A 36mm fibroids is seen in the posterior uterine wall at the fundus. A 32mm fibroid is also seen inthe poeterior uterine wall towards the cervix. A third measuring 28mm is seen in the right lateral uterine wall. The endometrium appears smooth in outline measuring 8mm at the fundus. Neither ovary was seen but no obvious adnexal cysts/masses seen. No free fluid seen.
Conclusions
Normal renal/bladder scan
Bulky fibroid uterus.'
No mention of endometriosis anywhere, yet he found it in the pouch of douglas and pelvic walls, he couldn't get everywhere because of the uterus.
The one this year
- US ABDOMEN AND PELVIS
Comment: (NE526) - Speak to Doctor (Not urgent) Exam Date & Time: 14/05/2020 15:30:00 Exam Name: US Abdomen and Pelvis Loss of apetitite and abdo pain. Also noted lump around umbilicus. FINDINGS: No evidence of an encapsulated lipoma, subcutaneous lesion or gross structural abnormality in the area of concern indicated by the patient (umbilical region). The liver appears normal with no obvious focal lesions. The spleen, pancreas, aorta and both kidneys appear normal. The gallbladder was normally distended and thin walled with no obvious stones seen within. No biliary duct dilatation seen. Transabdominal and transvaginal scans performed with patient's verbal consent. Non latex gloves and probe cover used. There is a multi fibroid uterus, with the largest two fibroids being posterior subserosal and measuring 47mm and 36mm respectively. There is a 48mm anterior subserosal fibroid with several smaller anterior subserosal fibroids noted. The endometrium is regular in outline, measuring 3mm, in keeping with the patient's recent cycle. Neither ovary visualised however there were no obvious adnexal masses or free fluid seen in the pelvis. CONCLUSION: Multi fibroid uterus No obvious cause for patient symptoms on scan today'
This was after lap and the follow up where he said it was deep, I'd had a couple of Zoladex. GP made the comment that although the fibroids are showing as bigger, they could have been bigger before the zoladex and this has shrunk them. No mention of endo. Both ovaries have never shown on a scan or MRI and at lap he could only see one. It will be interesting at next op to see how much or if any endo still there or he did manage to get rid of it at lap. As he couldn't get everywhere I would imagine it's still there and if he's correct that it's in the bowel, this hasn't been treated specifically.
Not sure if any of this helps, sorry a bit longwinded
I’ve just been for this scan today as I get unbearable period pains. They said my scan liked clear. But I know the pain I get isn’t normal. It honesty feels like I’m dying when it happens. I’m not sure what I should do now as I know there’s something wrong
Any advice
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