Struggling to get diagnosis!

For the last four years ago I had severe symptoms and was investigated for endometriosis, I was booked in for my laposcopy. 2 weeks before the surgery was due, I found out I was pregnant. 2 years on my son is doing great, except the last year my symptoms have been so severe I've ended up in A&E countless times. After scans and blood tests coming back normal I've finally been referred to a gynaecologist! I'm really struggling to cope with the pain and the look of disbelief on the doctors faces when I tell them my symptoms! It's getting to the point I'm now signed off sick as I'm having periods every 2 weeks and with each period I'm having severe pain and constantly living on pain killers and spending the duration of my period rolling around in pain in my bed! today I went into doctors and he made a comment about if I am planning more children, and that they may choose to turn my hormones off? He made this sound like this would be permenant and that having another child wouldn't be possible, has anyone had this? What does it mean?

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  • Hi - I am sorry you are suffering so much. Sadly your experience does sound much like that of many women when first going to their GP.

    The medications he is referring to are called GnRH agonists that work on the brain to stop the ovaries producing oestrogen which is what feeds endo. But the pain can be from other sources such as scar tissue or nerve irritation that is not influenced by oestrogen so these medications do not always work and can only be taken short term anyway as they can cause side effects that can sometimes be permanent. Some women see them as a miracle drug and others have a bad experience so there is no way of knowing how they will affect individuals. They can affect fertility but this would be uncommon. They are serious medications though and serious consideration should always be given before taking them especially as they can only ever offer a temporary solution. Your GP is jumping the gun in referring to them before you even have a diagnosis.

    There is a clear protocol to be followed for suspected endo and the first course would usually be to try you on contraceptives which give a lot of women a lot of relief - this may be pills or the mirena coil. Are you on any of these already? If these don't give relief you would have a laparoscopy to establish what is going on. Treatment varies depending on where you are in the UK. In England you have more choices and can take control of your treatment (in theory) and opt for a lap straight away. The protocol covers England and Wales but as this is backed by European guidelines it should be the same sort of course in all of the UK. You can find it at this link:

    Your lap will usually be done in general gynaecology and be aware that endo can sometimes be missed as it really needs a skilled specialist surgeon to identify all its forms. As more and more centres are being set up there will be less and less gynaecologists in the general sector who have the experience to do accurate diagnostic laps and you might consider being referred to a centre from the start. There are a lot of ladies on here being told they don't have endo by general gynaecology when they have typical symptoms who then find it hard to get a referral to a centre for a second opinion. You have the opportunity to get your treatment right from the start. Click on my name and look at my post on finding a specialist centre.

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