TA ultrasound results

[Sarahlouisex]

Hi ladies, recently had an ultrasound. Come back that I have a bulky uterus. This has never come back before uterus has always been normal. Any ideas on what this could be? Seeing an endo specialist in a couple of months xx

[weekari]

I was told that I had a bulky uterus too. Sounded like a bit of an insult to me! 😂 Mine was also tilted and i had fibroids but was told that none of it was cause for concern.

I've since been diagnosed with severe endo (2.5 years later) so I don't think that your ultrasound will necessarily mean that much of you're querying endo.

It's not great that you just get this info without an explanation. I was told I had fibroid tumours and just heard 'tumor' and obviously thought of cancer. I was terrified until I went away and googled it. It only takes 5 mins to explain things properly to people.

[Sarahlouisex in reply to weekari]

Lol! Since I had the scan I’ve been in agony, they have clearly aggravated something 😩and my stomach has been so swollen since look around six month pregnant 😭

That’s the reason I posted in here because I know endo doesn’t show up on a scan however because of the lack of explanation I went away and googled it and 2 of the most common causes for a bulky uterus are fibroids (which I don’t have) and Adenomyosis. It also says on the top of my paperwork follow up needed.

No I would be terrified if they said that to me! Their lack of explanation causes unnecessary worry. X

[weekari in reply to Sarahlouisex]

Yeah that's what happens to me after any exam or pressure on my belly/pelvis. Hopefully it will calm down soon.

Do you feel like things are quite inflamed generally? I just always feel I'm really tender from by belly button down.

It sounds like you probably need further investigations. An mri can be helpful, that's what discovered my severe endo. Though not all endo can be seen on mri but it's easy and non invasive.

Hopefully you'll get some answers soon. Endo investigations are basically a test of patience and tolerance! 😂

[Sarahlouisex in reply to weekari]

Yeah generally very tender and feels swollen. What areas did you have scanned on mri? As I’m considering having one privately before I see an endo specialist in August but completely depends on cost lol. It’s better to have an mri during your period isn’t it? My nan and auntie both had it and I have all the symptoms so I’m pretty certain I do too X

[weekari in reply to Sarahlouisex]

My mri was fine through an orthopaedics referral due to hip/back pain so it wasn't looking for endo. I didn't have my period when I had it. I've been referred back to gynae and they want me to have a more specific mri. I've not had any actual information about my diagnosis or treatment. I just got the mri results read out to me, it was just a huge list of body parts that had endo. It was pretty overwhelming. I also had a clear lap 2 years ago. I think I may be an endo anomaly! (weirdo! 😂)

The endo consultant may want to do an mri so might save your money and see if they do it or ask for it. I know how desperate you can feel to find out though. I've paid a fortune in private blood tests over the years my to figure out what was wrong with me. Desperate times. Xx

[Sarahlouisex in reply to weekari]

I too had a clear lap 2 years ago, however every month things are now getting worse and worse.

The one I’m seeing is the only one for miles from us so I’ve had to pay to see him privately as it was the only way I was able to make an appointment. Apparently you can’t be referred to a specific doctor through the nhs (I’m pretty sure that’s not correct however my gp was insistent that was the case).

That was my reason behind thinking about doing the mri so I had it to take with me along with ultrasound my gp arranged when I go to see him x

[weekari in reply to Sarahlouisex]

What a carry on. We've clearly both had a total mess around.

You definitely can be referred to a specific Dr. I was just referred back to gynae and requested to be seen by the surgeon who did my lap 2 years ago so he could explain to me what's happened. I also jumped the waiting list by about 5 months,which I think is pretty fair since I've waited on gastro, gynae and orthopaedic waiting lists all for the same issues.

GPs don't often actually know how things work. I'm not criticising them, they have a tough job and can't possibly know everything. My GP didn't even know specialist endo centres existed. I had to Google it in the appointment to show her the referral pathway 🙄

Tbh, if I was you, I'd pay for the mri. It's shocking it comes to that kind of thing but you've obviously been through the mill and need to just get answers so you can get some help. If you can pay for it, or put it on credit card, it's probably going to be worth it just to have the information.

Xx

[Sarahlouisex in reply to weekari]

I can’t believe how similar our experiences are!

My gp said it’s something to do with waiting times but once you’ve seen them you can then be referred back to them.

Mine didn’t know they existed either until I googled it while I was there! However even after he told me he would only do the referral privately but once I’ve seen him privately I can be referred back to his nhs clinic to see him. The other option I had was to be referred to a general gynae again which i feel isn’t an option anymore. Sick of being fobbed off.

Once when I was referred they don’t no tests just offered me HRT and then discharged me!

Yeah that’s what I’m thinking if I go armed with the stuff it hopefully will get things going a lot quicker. There’s just so many areas you can have scanned on an mri I wouldn’t know where to start lol! X

[weekari in reply to Sarahlouisex]

Wow! You've been really given the run around. Have you been in touch with PALS (patient advice and liaison service) they can sort out things pretty quickly? I've haven't used them yet, I'm just waiting to see what the gynae says before I act. I'm determined I'm getting seen at the endo centre.

Have you had a look at at the NICE guidelines for endo? It helps to know what's supposed to happen.

If you've not had a formal diagnosis, then i guess you won't meet criteria for the endo Centre referral. At least of you pay for this private consultation and the endo is found, you'll then get the NHS referral and I doubt you'd need to wait too long as you'll have had the assessment. In my centre (Edinburgh) you need to be referred by a gynae. My GP tried to refer me but it got bounced back.

I actually think if endo is found, you'd have a claim for compensation? It's just shocking you should have to pay. They do seem to think a clear lap is irrefutable evidence there is no endo when it seems a lot of times its there, they just can't see it. I think they should always do trans vag ultrasound, mri, and lap in suspected endo. And it should be endo specialists not general gynae.

I really hope your battle is soon going to be won and you get the help you need. Aug isn't too far off I guess. At least its supposed to be a nice summer. You can rest in the sun ☀

Xx

[Sarahlouisex in reply to weekari]

I haven’t no, didn’t realise you could contact them so maybe will use that as a next step.

I also will look the NICE up too.

I think that’s probably my problem, I’ll continue how I’m going to get a diagnosis and then go from there. Although my GP didn’t know anyone actually specialised I. Endo 🤦🏻‍♀️

Thank you so much, I hope your next appointment goes well and you get the treatment you need xx