Today I found out that my ultrasound was clear, most people would be happy with this, but I'm disheartened and kinda devastated. Knowing something is wrong but scans and Dr's telling me everything is fine, just makes me feel like I'm going crazy. My family are baffled why I'm upset thst it's clear , as surely I should be relieved. But I've been in so much relentless pain, and still nothing to show for it, nothing to prove that it's not normal, and I'm not exaggerating or seeking attention. I know I have to keep trying and pushing for more tests, but it's draining and this clear scan makes me twonder if I should just duffer in silence and keep quiet about my pain, as without something to prove it, I hate the thought of people thinking I'm seeking attention or I just can't cope with normal period pains.
I'll keep fighting, but feeling lost and disheartened. I know the average diagnosis takes around 7 years, the journey ahead feels so daunting and unreachable at the moment.
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burke123
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Hi, I'm really sorry that your suffering. All my scans showed up clear too. I kept going back to my gynaecologist though who finally gave me a laproscopy and found it was stage 3 endo with ovarian cysts.
Keep fighting its not in your head! Even if you have to put your foot down. I hope you find some relief soon.
I had exactly the same thing happen to me last week, so don't feel like you're alone! It is a horrible feeling because you want answers.
I don't have any advice for you, sorry, but just know that it is okay to feel upset over clear results.
Has your GP followed up with you after you've received your ultrasound results? My GP has said to keep monitoring everything but said that because nothing has been found on my ultrasound, they're putting my heavy periods as menorrhagia. I'm now trying tranexamic acid to lighten my periods, but I still don't feel like this is a good enough answer when endometriosis has been mentioned to me.
Other people on this site have really good advice for different things, and the general advice is to keep pushing your GP for answers, especially if you're in pain!
Hi, sorry read your reply. Do go back to your GP, tell them ultrasound is useless and that if any scan is used MRI is the best option, but no guarantee. Your GP should be helping you more. Referrals are taking ages, putting in for one now and still monitoring is best, and GP sorting MRI.Take care 🙂
Scans will only show deep endo and endometriomas as I expect you will know and ultrasound is the best for diagnosing rectovaginal endo, But it requires advanced skills. Telling GPs that ultrasound is useless isn't really helpful to be honest.
Honestly you want to get bitchy again? What is your problem? GP’s need to understand that until proper training in ultrasound to detect Endo, it is useless and unless they are made aware they will continue to use it as a guide for diagnosis. It could be the best tool eventually and so much cheaper.
Remember the conflict the suffragettes had in getting the vote?
The only voices that will make all this aware to others is our own.
The forum is not here for you to get picky about words.
It’s about confidence to chase to have a sufficient diagnosis and treatment, not waylaid by years and the chance of losing the ability to have a life.
Telling a GP that ultrasound is useless is not helpful advice. In fact it is worse than unhelpful really as it will simply perpetuate this belief in GPs. Women have the means of acquiring knowledge now to not only empower themselves but to educate doctors. Clearly this should not have to be the case but it is and if women have opportunities to educate their GP with evidence-based info then the opportunity should surely be taken.
You yourself have just said that GPs need to be aware and understand that proper training in ultrasound to detect endo is needed so how can telling them that it is useless help? They should rather be told that ultrasound will only detect deep endo (and endometriomas) but regular sonographers only look at the uterus and ovaries and it requires at least a level 2 sonographer with non-ovarian training and an ability to detect the sliding sign, which is the cardinal test on ultrasound for rectovaginal endo. This is all the more important when endometriomas are found as they are almost always associated with rectovaginal endo. If every opportunity was taken to tell this to GPs by those who have a clear basic ultrasound, especially with symptoms of severe disease, or those with endometriomas, there may be hundreds more who are then referred by a GP with this knowledge to a sonographer proficient in the sliding sign, which Susanne Johnson (world renowned expert in Southampton) has said is very easy to learn. Pretty much all cases of severe/rectovaginal endo would potentially be picked up early with referral on to an endo centre. So educating members on here on what to tell GPs in order to get the scan they need rather than telling them it is useless seems better advice.
Even if MRI was the best diagnostic tool it will only show deep endo and then only if the correct MRI endo protocol is used. MRI often comes back negative because incorrect protocol was used and/or it wasn't read by someone with the right expertise. That applies to MRI every bit as having the right expertise applies to ultrasound.
An MRI would only be done if there is evidence of deep disease at this stage in an endo journey and a GP is simply not going to be able to send someone with pelvic pain and a clear ultrasound for an MRI. There are processes to be gone through. I agree that this forum should be about confidence to chase to have a sufficient diagnosis and treatment but that assumes correct information is given. I'm really not sure how giving correct information is bitchy and it is really unkind of you on the poster to use her post in this way to try and inflame an argument.
I wasn’t trying to inflame an argument, you were and I bit deliberately. The trouble is if you didn’t get picky about a single word we are actually on the same side with views. That’s so frustrating and not united, this site is about support.
What happens and what should happen are still entirely different things. That’s obvious by the posts that continuously repeat how women are being fobbed off by their GP because the GP doesn’t know what to do because the system hasn’t moved forward enough. Yes we should push for the best outcome sooner rather than later for whatever condition. They get blinkered and incorrect info comes back for any test. Last month I had my gallbladder out, Feb was bowel adhesions, nothing much showed on scans, a few small stones, yet my gallbladder was inflamed and with adhesions and my bowel was tethered from left to right. The bowel should have been done at the hysterectomy. Unfortunately if I hadn’t pushed and delved I wouldn’t have got treatment. I’ve had to ignore so much crap over the last three years.
Yes we have to have confidence to move things forward, ignore scans and even doctors/consultants and know our own bodies. Now I’m dealing with potential heart failure because of a CPET I did before the last op. I paid a cardiologist to review the results because the GP and anaesthetist ignored them. Soon as GP reviewed the cardiologist report he referred for scans. I’m on benefits at the moment because of so many delays by doctors.
I can totally relate to the double feeling. Of course you don't WANT to have a chronic condition! So when tests, exams, ultrasounds come back clear, you should simply be happy? It makes you doubt and question yourself in a relentless way!
I've been in the doctor-rollercoaster since 2019 now, and only know about the existence of endometriosis since a few days. I mainly sought help for severe deep dyspareunia and kept quiet about painful periods, because I didn't want them to blame it on menstrual pain 🤦♀️ Now I understand that it could actually be due to the same condition.
My ultrasound came back clear too, in Sept 2021. They think my pain is due to stress and depression, and have been getting different kinds of 'help' since, that haven't changed a thing.
I'm also trying to take the advice of most endometriosis warriors, to push for a laparoscopy. There is absolutely that fear that the laparoscopy will come back clear, and the doctor's saying 'You see?! You're fine.'. But should that scare us out of investigating the pain we're experiencing?
I'm looking at it like this. You may not have endometriosis, but nobody can know for sure until you have a laparoscopy. So as long as you have symptoms, we should keep pushing to find out. I've started to write down my history of symptoms, and started tracking since yesterday. Symptoms are symptoms, whether it turns out to be endometriosis or not! The pain is not in your head!
Definitely not in your head and I hope they didn’t palm you off with antidepressants. It’s not down to stress, it’s an imbalance of hormones. Keep going 🙂
It’s to get rid of patients being annoying. Unfortunately it failed when my GP suggested it, and then every GP after until I proved it was something tangible.Have you weaned off them?
The general thought in Gynae world is ops aren’t always a solution. They want to try other things to see if it works. My cousin, who likely has Endo, has been on the pill and it stops the pain. I ignored it for a very long time and is possible I have residual damage.
Line of sight is still better than any scan until training improves. In other European countries they use ultrasound more successfully.
I've noticed that too looking at some endomitrosis information coming from medical professionals online.. To just prescribe the pill when endomitrosis is suspected. But isn't that unfai? Because it can do more damage over time and mess with other organs, fertility, and the list goes on!
I'm very surprised at the health care I have received in Norway, expected it to be further ahead somehow.
I've weaned off the antidepressants but not the beta blockers.. But looking for an alternative way to reduce migraines.
It’s very unfair and I agree can do harm overtime if unmanaged.Fertility is very important to most and should be acknowledged far more. The first Gynae I met in Dec 19 was amazing. I’d had a tough time all year with severe pain and GP’s did nothing off their own back. He diagnosed Endo I was 51, he’s probably one of very few who would have. They aren’t all bad I know.
You surprise me as well, I thought you were way ahead. I know some Drs in Denmark are working with the BSGE to improve Gynae consultations. I took part in a questionnaire survey. It’ll really change things if/when it comes out.
That’s great you’ve weaned off the antidepressants 🙂 migraines can be various causes, is there any particular time of day they occur? Have you noticed a pattern?
I used to wake with horrible headaches and tested for severe sleep apnoea, I think the whole hormone mix is to blame.
Apparently the worst thing for any humans mental well being is uncertainty. Hence a clear scan only extends that uncertainty forward and it’s utterly understandable irrespective of the root cause . We literally need answers. So I get your feelings.
Scan wise like others I’ve had countless clears as have relatives and all of us had nothing to show. All of us have endometriosis. All it represents is that either the sonography wasn’t to necessary standard or yup it will take a lap to reveal itself. A clear scan doesn’t mean you don’t have endometriosis. Keep pushing for answers. Your not mad, your pain is real.
HiUnless the radiologist knows what Endo looks like on an ultrasound, very rare, it won’t be seen. Even CT or MRI doesn’t always show. Endo didn’t show for me on any scan, had loads. Look up the NICE guidelines and info on Endo UK and RCOG sites. Print off for your family.
Your GP should know this by now and they should be referring you. You aren’t attention seeking and your pain is genuine, please don’t let anyone tell you otherwise.
It’s important you remember this and remind yourself.
If you want children at some point make sure you tell the GP so they can refer you to a knowledgeable Gynae. Don’t ask GP, tell them (nicely), far harder to back down. Using the econsult leaves a paper trail. Include a link from the guidelines.
What do you think is a normal period? I suffered/ignored for a very long time, I didn’t want children. It’s important you get the right help now to give yourself the best possible life you can.
Your GP can give you better pain meds, they’ll hate it, but just using in the run up should give you more control.
I’m not saying it will be easy, trust your instincts 🙂
I’m so sorry you are going through this. My 20 year old daughter is going through the sane thing. She is waiting to see a gynaecologist who specializes in endometriosis. I hope you find some help and don’t give up when you are in pain everyday you deserve to get help. Good luck
I had 7 clear scans in the years leading up to my diagnosis. The last two were in the year I was diagnosed, the last one a month or two before my MRI showed I had stage 4 endometriosis. Push to get an MRI, push to get referred to a BSGE registered gynaecologist.
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