Endometriosis Diagnosing

[LilyLily1999]

Endometriosis not detected on trans vaginal scan…😭

So since the start of the year I’ve suddenly been having symptoms of endo as well as fertility issues which I’ve never had before…my gp said it sounds like endo and I went for a vaginal scan on the weekend however they’ve just said my results are normal and nothings wrong. I feel like I’m going crazy as I know somethings not right but it’s as if everyone’s telling me I’m fine and ignoring me, I’ve heard endo is hard to diagnose but a few people told me a vaginal scan picked it up…I’m absolutely heart broken as even if it’s not endo there’s definitely something wrong with me as this really isn’t normal for me and only started at the start of the year. All my symptoms I’ve listed below and they all align with endo…I feel like I’m fighting for a diagnosis.

If I had anything wrong with me would they really not detect a single thing on the vaginal scan?

Symptoms:

Painful periods to the point painkillers don’t really help and I can’t do anything but lye still.

Bloated stomach that makes me look pregnant which happens after eating but can occur randomly.

Painful cramps in tummy and thighs which happen randomly.

Trying to convince for a year and so far no luck when I previously concieve quite quick.

Lighting crotch happens randomly.

I was eventually diagnosed with endometriosis and none of the internal ultrasound scans I had detected it as the deposits are so very small.

All your symptoms point to endometriosis.

I would keep up a pain and symptom diary listing all symptoms and pain on a scale from 1 to 10.

Will your GP refer you to a gynaecologist?. You may have a long wait though so if you can go private, even to see a gynae for an initial consultation would be advised. You need to see such a person.

Do not be put off by this and seek further answers. You will need to be persistent in order to get answers.

I was diagnosed by a transvaginal scan but I’d had about 4 previously over many years that showed nothing. It’s only because it prevented my ovary from moving around freely they found it. I’m on a waitlist for a fertility clinic to have a hycosy to see if my tubes are affected (I can get pregnant but have had ectopic and early losses). Could you be referred for that?

In terms of pain does your GP offer you anything? I suffer quite badly on the first day of my period (I get sickness and diarrhea from the pain, I go really hot and pass out so basically have to lie on the floor in a ball until it passes). Naproxen is the only thing that’s touched it and I have to start taking it the night before- definitely try it if your Dr will prescribe it to you.

I used to get the pain in my thighs, very common when you speak to an endo specialist. I came off the pill which had been masking my symptoms so suddenly had an onset of it all. Had constant uti’s feeling, bloating, thigh pain as well as just a niggle pain. Passed out once due to pain too. I went to the doctors everyday for 3 weeks and they just fobbed me off. Until the surgery had a doctor covering one day, she changed my life. Referred me to Chelsea and Westminster hospital and straight to see a specialist who said within 2 mins that u have endo. I had an operation to laser it all out and then he said I would have trouble conceiving as everything had been stuck together. Anyway 6 months later we decided to try and first time I got pregnant! Just keep pushing until they refer you. You know your body and don’t give up. Apple cider vinegar (braggs) I think also helped x

DD’s gynaecologist said laparoscopy was the only way to definitively diagnose endo. We are in Aus though so maybe guidelines are different. Turned out yes, it was endo so he cleared it out (I am sure there is a more scientific term for that). We went private though, the wait would have been up to two years for our version of the NHS.

@LilyLily1999 You Need to ask for an MRI (try and push for contrast) as it can be hard to see on a transvaginal ultrasound. They may also not be able to see it on MRI either as the only way for definite diagnosis is a laparoscopy and then they will often excise (ensure they don't do ablation) the endometriosis tissue if they find it etc.

The main symptom is not actually period pain because endo is not a period condition - it's a whole body inflammatory condition where the endometriosis tissue even produces its own oestrogen and the pain is felt throughout the month not just when on your period. Often endometriosis on the ovaries can form cysts containing old blood called endometriomas (also known as chocolate cysts) which can be very painful.

Some of your symptoms do indicate endo but could also be adenomyosis where the lining of the womb grows into the muscle of it, but unlike endo is localised to the uterus only. So to distinguish what it could be, you'll likely have another ultrasound perhaps transvaginal and then also an MRI. But crucially you can still have endo even if they don't see it on the scan, the only clear way for diagnosis is a diagnostic laparoscopy and then mangagement can look like pain medication depending on how severe your pain is (can be opioids, NSAIDs) and contraception and hormonal treatments (gonadotrophin releasing hormones).

Main endo symptoms:

• Irregular or heavy periods

• Pelvic pain

• Pelvic pain on opening bowels (dyschesia) and wider gastrointestinal symptoms (diarrhoea amd constipation)

• Pelvic pain on passing urine (dysuria) and bladder symptoms sometimes

• Referred pain to the tops of the legs or back

• Fatigue

The links below have much more detailed and useful information as does the Endometriosis Uk website. Hope this helps.

https://www.leedsth.nhs.uk/patients/resources/endometriosis-2/

https://endometriosis.cymru/diagnosis-treatment-and-care/diagnosis-pathway/

https://www.nhs.uk/conditions/adenomyosis/

Mine was diagnosed via laparoscopy.

Hi everyone! I thought I would add our campaign link here which is aiming to tackle the systemic sexism women face within UK healthcare. Our campaign, 'Sexism in Healthcare Destroys Lives', is working to change the experience of women with endometriosis. I really hope this resonates with at least one of you? Please find more information on my own personal post :)
www.mumsnet.com/talk/mumsnet_campaigns/5425043-help-tackle-sexism-in-womens-healthcare-every-donation-doubled-this-week?reply=147730668

Ask your GP to refer you to an accredited endometriosis centre: https://www.bsge.org.uk/centre/category/accredited-centres/
Unfortunately the waiting times are really long
It's very common for an ultrasound not to diagnose endometriosis, you might need a laparoscopy. I second the suggestion to speak with Endometriosis UK