Inconclus TV ultrasound

[Ambrose04]

I'm asking on behalf of my 19yr old daughter, she had a private transvaginal ultrasound last week with a gynaecologist however it didn't detect any endometriosis just some free fluid in the pelvis. Does this mean it's unlikely she has endometriosis? Have looked at seeing a private endometriosis specialist but his first investigation is a transvaginal ultrasound, which will obviously not show anything!!!!

I hate the thought of her suffering for the next 5-7yrs while she follows the NHS path but its a MASSIVE amount of money to spend to be told she doesn't have it.

[Lindle]

Was the ultrasound done by an advanced sonographer with training in detecting endo? The regular sonographers in gynaecology just look at the reproductive organs and endo is mostly deep behind the uterus or other areas they are not skilled enough to look at. The vast majority of basic ultrasounds come back clear.

A private ultrasound with a top expert is endo imaging would be around £400. Where in the UK are you - I run an endo groups and we have a list of them.

[Ambrose04 in reply to Lindle]

Thank you for your reply. We're in Surrey. I'm not sure how skilled she was but she is a consultant gynaecologist. We paid £400 for the consultation and the TV ultrasound.

[Lindle in reply to Ambrose04]

There are very few with the expertise required. It's a shame (obviously you would have no reason to know) but you are between two of the best in the world - one in Southampton and one in London.

[mjo44 in reply to Lindle]

hi could you let me know who the one in southampton is please, i joined a group on facebook and they provided a list but there wasnt any in southamptom which is closer to me than london x

[Linley]

May I ask what your daughters symptoms are?

[Ambrose04]

Painful ovulation, extremely painful before period starts, painful sex, frequent urgent urination. She's always excessively tired, we put this down to her having ADHD but it could be due to endometriosis and recently she has outbreaks of acne.After the TV ultrasound she was in agony and passed out very briefly. She also bled quite heavily the day after it.

[Linley in reply to Ambrose04]

Feel very sorry for her. I know her pain fortunately my Endo days are now over but let's get back to your daughter. A friend of mine said pelvic MRI imaging is better as it gives more reliable pics. But in my opinion a Laparoscopy is the ultimate procedure. More patients are taking to the private sector route, I found this out myself last month. Patients are dipping into savings or putting it on a credit card to get out of the pain they are in. There are a number of private hospitals in Surrey and some will give you a quote, suss out the credentials of the listed Gynas and decide. Wish your daughter well and good luck.

[Coral07]

no matter what type of scan it is it can not always detect endo if there a endo specialist they will be the first to tell you! I had multiple scans which never found anything when I finally got surgery I was diagnosed with stage 3 endo

[Ambrose04 in reply to Coral07]

Thanks for your reply. It's so hard to imagine that when someone's experiencing so much pain that nothing shows up but I've read so many stories that say the same. I can't stand the thought of years of this ahead of her possibly getting worse before a proper diagnosis is given.

[FriesLover]

Hi I had transvaginal scan many times and accept of small cysts they could not see anything. Last month I had laparoscophy and to my surprise they discovered endo on the womb and kidneys. So I think it is not always visable, good luck.

[Stollbats]

It doesn't always show up on scans, I have had multiple ultrasounds, and mri's nothing showed other than cysts. I had a laparotomy and was diagnosed with severe endometriosis. If you can afford the private route then definitely go for it, NHS waiting times are awful. I hope your daughter gets some relief soon

[Rasmol]

sorry to hear your daughter is having these issues. My endo was never shown in regular scans, it was only diagnosed by MRI scan by a specialist although the most accurate method for diagnosis is laparoscopy. I have only been able to get treatment via private health insurance. In the meantime the mini pill which stops periods has been super useful to stop my pain. I hope that helps. I wish you all the best.

[Ambrose04 in reply to Rasmol]

Thank you for your reply. She was on the combined pill for about 6 months last and it did help ease the pain, however she became very anxious, experienced panic attacks and very low mood so had to stop taking it . Understandably she's very wary of trying pills again.

[ccfd9]

Hi

There is an American endometriosis specialist Cameron Nezhat in Atlanta who has developed an app that asks a number of questions and will give your daughter a score. If the results are 90 or over then there is a 95% chance your daughter has endo. The research was published in fertility and sterility (the scientific journal linked to the American Society of Reproduction Medicine).

You could give that a try, it is free to use. This would arm you with information to take to your gp/ gynaecologist.

Have you looked at nutrition to help your daughter’s symptoms? A good nutritional therapist like Dian Shepperson Mills,who knows about endometriosis from first hand experience may help. She wrote the book “Endometriosis: a key to healing and fertility through nutrition”.

[Palomino13]

Hello Ambrose,

These scans are operator dependent, this was advice from all surgeons I have spoken with (all private). You need to have one done with a an experienced sonographer specialising in Endometriosis. Ive had a few with the NHS and the sonographer only ever picked up on an endometrioma cyst (which was hard to miss) nothing more. Any DIE affecting bladder and bowl needs a very skilled specialist.

Hope that helps 😊

[Sunflower6758]

Hello, I'm so sorry to hear of your daughter's painful journey so far. I couldn't agree more with the other comments, particularly that scans are not completely reliable and very often show up 'clear' but endo is found upon laparoscopy. Its unfortunate that the only definitive option at the moment is surgical intervention, but I think its worth it just to get some answers and hopefully relief. In the mean time I would recommend the book 'How To Endo'- it has been my bible! Written by a young Australian girl and it made me feel so seen and gave me so much useful info- there is so much mistaken info out there so make sure to research in the right places. Also following an anti-inflammatory diet as much as possible can be helpful for symptoms. Wishing her all the best and sending love x

[HT267]

Hi Ambrose04, Firstly so sorry to hear about your daughters symptoms it's horrible to go through this whether she has endo or not. I had a scan around your daughters age which showed just some fluid and nothing else fastforward 12 years later my symptoms were horrendous finally hap a laproscopy that showed my ovaries were stuck to my pelvic wall as was my ureter and my Bowel and uterus were also stuck which was all putting pressure on my bladder causing the frequent urination. I would say what's happening with your daughter is not normal and regardless of whether its endo or not don't wait keep pushing for lap on nhs if cannot afford private had I been diagnosed sooner it wouldn't have been so severe. I wish you and your daughter all the very best