I have an ultrasound on Weds to (hopefully) get a diagnosis. I've had symptoms since I was a teen but after getting the implant a lot of them cleared up. However, the implant isn't helping anymore and my last period made me want to scream in pain.
I'm terrified that the ultrasound won't show anything and that I've been through this all for nothing.
Basically I'm wondering if endo is good at showing up on ultrasounds and what can be done to relive symptoms (preferably surgery-less)
I also want to have kids in the near future and I'm scared that this will ruin mine and my partner's chance of conceiving in the future.
Basically this is scary and I just need someone to tell me it'll all be okay
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theallnewme
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Hiya, unfortunately ultrasounds aren’t very good at showing endometriosis. The only way of knowing 100% is by actually having the diagnostic laparoscopy, so that if you do have endo they can see what stage or how bad it may be. For me, I had an ultrasound that showed a cyst, and rather than waiting for my gp to refer me to gynae I booked privately and had an internal ultrasound, which shows a bit more. From that I was put on the waiting list for surgery and finally got a confirmed diagnosis.
If you want to try and relieve symptoms maybe request a different conception ( I was given microgynon pill and has helped me greatly) or you could also try an endo diet to try and reduce inflammation. Hope this helps
I had stage 4 endo and it didn't show up on an ultrasound. MRIs will also show up endo and are much better at showing it than an ultrasound and obviously a lot less hassle than a laparoscopy. As the MRI can show them the extent of the problem, it is good to have before the lap so they know what they're going to be dealing with.
Do you think I should bug them for an MRI if this ultrasound shows nothing then? Because I'd assume they'll be stubbornly against doing it cause of the cost they cause for the NHS :/
If they did that they would surely be in some 'breach of trust' of type situation, as it is very widely known and understood (even among the public) that ultrasounds do not show most Endo tissue*.
The purpose of the ultrasound is largely to rule out other issues and conditions which could be causing the problems. Internal ultrasounds can sometimes* show certain types of Endo, such as endo growths on the ovary, as placing the Endo probe in the vagina, puts the probe in close proximity to the ovaries. I had this done on several occasions (when younger) in relation to other issues as well as Endo. It isn't too uncomfortable and if you are lucky enough to have a lovely well-trained medic, she will talk you through everything. I opted to see the screen and found it fascinating to see the ovary. We probably all need to be less squeamish and more aware and knowledgeable about our own bodies.
Honest, trust me, it's safe, okay and is the best step to have before going onto a laparoscopy, if that is to be the next step, but even if the ultrasound does not show any endo, it's really worth having it done, to rule out other issues.
Take care, and try not to worry: if you can, take someone with you.
Thank you so much! Unfortunately my partner works full time and his boss is a twat and my family lives over 3 hours away and also couldn't get time off so I have to fly solo. This was really reassuring to read and has slightly put my mind at ease it's annoying it's so hard to diagnose it's been 3 years since I first went to a doctor about it and I'm only just now being taken seriously since moving to the North of the country 🤦♀️ it's nice that there's such a supportive community of women supporting women here!
If it helps, although it may not seem like it, things really are better now (well … there may currently be a bit of a downturn due to the entire economic situation being a mess) but generally it is better.
I am in my early 60s, and it took from my late teens until my early 50s to get a proper solution. I didn't get a lapraroscopy until my late 30s, when the patient/Dr relationship was crap. At that time, I was told that they had done nothing during the lap, as the endo was scattered and too general to be worth removal. I spent most of the next 15 years on the pill.
(NB My husband had died not long before that first lap, and the reason for the lap had been that I'd stopped the pill and the pain, periods, etc. had got so much worse). Then, when I was 50 I was told to stop the pill, 'cos of my age: that's when things got dreadful. I had another lap - which by current standards would/should have been purely exploratory in case I needed to see a BSGE gynae - but this chap removed quite a lot of scattered endo. I was pain- free for less than a year, then it all grew back and gradually things got worse and worse.
I finally saw a leading Gynae, privately, and he suggested the mirena (on the NHS), which worked brilliantly for me, until I was definitely post-menopause and had it removed.
So, - if you are not planning to try for kids, soon - I would recommend one. Okay, they don't work for everyone, but it was a lifesaver for me. Also, your local GP can remove it for you, unless it's known you have a tilted uterus or other issues.
Hope this helps and that all goes well: take care.
My first was an internal (trans-vaginal) showed nothing, I was dismissed as imagining the pain by my GP and over 5 years the pain got worse. I was adamant then it was endo. (It gets better!)
A couple of months ago I had a normal ultrasound (like if you were pregnant) and a cyst showed up in my uterus, I was referred to an NHS hospital as this was private (funded by the NHS though), and on Wednesday had another internal ultrasound, two cysts showed- one on each ovary.
Never stop pushing for a diagnosis if you firmly believe you have it. Really, if it is endo and not just cysts, and this is my opinion with little to no experience (I am not a doctor!), then it possibly won’t show up first time on an ultrasound machine as it’s similar to scar tissue and therefore skin. Skin doesn’t show on an ultrasound. As others have said, a lap is the only way to definitively diagnose endo at the moment. I’m waiting for my lap but have been told it’s almost definitely endo and given my options. I’m not gonna lie, at this stage it is scary. I’m only 25 and with two cysts I’m not sure what my future for kids is. Luckily my Partner and I don’t want kids for a few years so we have time to discuss treatments and possibilities. A lot can happen in a few years and new technology is becoming available all the time for science & research around the world.
I really hope you get an answer to your problems and that it may be easily fixed or managed. Let us know how you get on in the thread!
Thank you I will do! I'm in the same position as you age wise and life stage wise me and my partner want kids in a few years and that's my biggest fear I guess.
I'm hoping that since my pain has increased the past month that there may be something visible on the ultrasound so fingers crossed but doubtful 😂
I just read that you have to go solo on your next appointment. I went solo last week too. My mother lives 4.5hrs away in London, my boyfriends boss is also an idiot who won’t give him the time off for me (he actually had to cry in front of her to show he needs time off for me!) and I find it very strange that the North are also taking you more seriously than your previous area. Without knowing it we have a lot in common, so you won’t be alone as you can see someone else has had a very similar experience. You will be fine, and if you’re not, you have everyone on this forum to speak to.
PS- have you kept a ‘pain diary’ and noted your last dates of your period? My consultant found the info handy regarding period and was concerned over how I described the pain (like a jack hammer trying to break concrete, only on my hip bone, or like carrying a bag of stones around my abdomen)
My GP would rather play 20 questions but I'm a human diary I remember dates and times for everything 😂 and thank you unfortunately I'm currently spotting which is frustrating I'm just hoping they'll still do the ultrasound since it's meant to be transvaginal 🤦♀️
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