Hi
I've been going through a diagnosis for about 12 months and I was about to be referred to the gynaecologist but my GP wants me to try some treatments first such as painkillers or hormones. I was on the pill when I was 17 for a few years and I didn't get on with it and I really don't want to go back on any form of contraception. Does anyone know if I have to go through the treatment to get the referral or can I reject the hormonal treatment?
Have you had a scan yet?
Yes I had two scans in the end because they saw a cyst on my ovary in the first one. My doctor did say it could have been an endo cyst and that's why she was going to refer me but now she wants to try treatment options first
An endo cyst (endometrioma) should be easy for a sonographer to identify so it first needs to be identified from the report whether this was the case. When these are found they often indicate deep endo elsewhere so the next stage would be a more expert scan to look for deep endo. Medical treatment isn't appropriate at this stage unless you personally wanted it.
I would take the appropriate pages of the new ESHRE guideline to your GP. There is a flow diagram on page 187.
eshre.eu/Guidelines-and-Leg...
Those guidelines are fantastic. I'm going to print them out and send them to my useless GP. Thank you.
That's so helpful, thank you so much! I will take those to my GP because I'm finding it really difficult to get across to them what I want
Hi HollyBriant9875 It's also important to note that endometriosis does not always appear on scans. I had a scan 1 month before my diagnostic laparoscopy, which showed no endo. A month later, during my surgery, endo was found on 8+ areas of my pelvis and abdomen, including an endometrioma on my right ovary which was hiding next to an artery.
As I said before, keep fighting until you find a doctor who listens to you 💪
Take care,
Claudia
Hello Claudia. HollyBriant9875 has already had 2 scans with potentially a suspected endometrioma and the new ESHRE guideline requires that, in that case, a more expert scan is done to look for deep endo. A suitably qualified scanned should be able to identify the sliding sign on TUS. Your scan was probably done by just a regular sonographer.
In the link you have posted it says 'At the moment, the only way to diagnose endometriosis is through an operation called a laparoscopy'. This is incorrect and a diagnostic lap is not the gold standard for diagnosis. X-rays are referred to which are not appropriate for endo.
It refers to the BSGE accredited centres but having a suspected endometrioma alone does not qualify for referral which is important to note. Women can only be referred to a consultant in their team in secondary care and are invariably seen by general gynaecologists . It is really better to identify gynaecologists with additional training out of centres as those listed will rarely see those with just suspected endo without evidence of deep disease since this is treated in secondary and not tertiary care.
It also says 'You may find it helpful to ask to be referred to an endometriosis specialist, as not all gynaecologists specialise in the condition. This may be particularly useful if it is suspected that you might have endometriosis affecting other organs such as the bowel or bladder'. This totally excludes the most common presentation of severe endo, rectovaginal involving the pouch of Douglas, cervix/vagina and US ligaments, as confirmed by the NHS specification for severe endo. And it is a NHS requirement that such women are referred to a specialist endo centre, they shouldn't have to ask as if it is a choice.
Hi HollyBriant9875
Nice to hear from you 😊 It sounds like you're on a long journey, fighting for your diagnosis. Sending you strength and compassion, as so many of us have been in your shoes! Yes, you can absolutely reject the hormone treatment if it is not what you feel is best for your body.
Endometriosis UK has a resource which I think you'll find super helpful. It's an information pack on getting diagnosed and you can read it here: endometriosis-uk.org/sites/... It provides advice on how to tackle those tricky conversations with your GP or consultant. On page 2 there is a section on 'how to get a referral'.
Please feel empowered to get a second (or third, or fourth) opinion if you don't feel your doctor is listening to you. You know your body best 💛 Hope you get the referral you need.
Best wishes,
Claudia
Oh thank you so much, Claudia! That's so helpful and I will be definitely reviewing that for when I have my next appointment. I feel so much better knowing that there is support out there and advice that can help me and make me feel better about the position I'm in! Fingers crossed using the advice I've been giving, I'll get the referral I need!
The NICE (National) guidelines are that you have to take a hormonal treatment for 3-6 months before a referral - the Gynae will ask you to do the same before considering surgery - but they will do a scan to exclude any other cause of the symptoms.
I empathise - the pill did nothing for me after 6 months and the GP refused to refer me. I thought it was making me depressed, but I think this was just the pain/ lack of treatment.
I am taking Desogestrel post surgery and it’s now having an effect on my periods when it did not before surgery (but I have 1 ovary now, not 2 because the GP refused to refer me). It’s not making me depressed because I am no longer in pain.
Make sure you track your periods whilst you are taking meds (using an app such clue/ Flo)
& the symptoms
& track the pain out of 10, including what it prevents you from doing/ effect on your life.
Take all this info to the GP & if they don’t refer you ask why, refer to the NICE guidelines and consider making a formal complaint if they don’t follow the guidelines.
Referral to endo centre/urine infections
Referrals
Referral
Referral 
Do I have a right to ask for a referral to an endo specialist?
