Zoladex?? Advice and experiences?

[Bluehusky96]

Hello,

I'm a year into my journey of a diagnosis.

I've had a lap from a gyne who doesnt specialise in endo, and a private mri scan.

After a horrific hospital appointment, I had a follow up call to tell me they're recommending I have Zoladex injections along with a new daily tablet (I couldn't understand the doctor well, but he said I'll have a letter soon with the name in).

Please can anyone share their experiences of Zoladex, reading about it online has made me feel rather anxious.

They've said they're putting me on Zoladex so they can determine if my pelvic pain is Gyne related. If I'm still in pain on them, then they have said it definitely is not Gyne related.

Thank you as always 💞

[Lindle]

This sounds to be a very uninformed gynae where endo is concerned. You should only be treated anyway by a gynae with a special interest in endo so if this is just a general gynae who doesn't declare any such interest they shouldn't be treating you or recommending anything.

Using these medications as a 'test' for gynae issues is totally flawed and it's not clear where this came from as it isn't in any guideline. Working through the process of what these drugs do, they act on the brain to stop the pituitary gland producing the hormone required for ovarian follicles to develop (FSH). It is the ovarian follicles that produce oestrogen to build the womb lining in readiness for a pregnancy. So stopping follicles from growing stops oestrogen production by the ovaries. It is often assumed that it is this oestrogen produced in ever increasing amount during the first phase of the cycle that drives endo. This may or may not be so but there are other means by which the body produces oestrogen, including endo lesions themselves, so as this 'test' assumes that it is only ovarian oestrogen that influences gynae issues it is unreliable from the start.

These drugs (GnRH agonists) aim to stop periods as well so may be more reliable at determining whether the uterus is a problem (eg adenomyosis), so in cases where most pain is at period time it may be that they stop it. That isn't surprising but there could by gynae problems that aren't actually causing symptoms (yet) which could still be there. There is still a perception that persists, driven so often by awareness campaigns, that endo is all about periods and bleeding which presumably play into this sort of belief by some general gynaecologists with little endo knowledge. The drugs also suppresses systemic inflammation so might have a beneficial effect on general pelvic pain.

For many if the drug does stop pain they may be glad to accept the explanation that they have a gynae problem. But what happens when the drug has to stop as it is only licenced for a limited period? Periods recommence and pain returns. So they are back to square 1. Has the gynaecologist indicated what would be done then - would they propose to put you on another longer term medication without any diagnosis? It is well recognised that this is a risk factor for severe disease progressing and appearing years down the line as endo can still progress when on medical treatment.

The worst aspect of this 'test' with GnRH agonists is when they have no effect on pain and the statement you have given above by the gynaecologist 'if I'm still in pain on them, then they have said it definitely is not Gyne related' can then precede a long path of worsening suffering with no treatment plan. What they are effectively saying is that no matter what gynae problem someone might have, no matter how severe or advanced, if you still have pain after these injections then no such problem can exist. This is totally outrageous. It is clear in the NHS England treatment specification for severe endo that:

'The cause of the disease remains unknown but many theories exist. Treatment involves medical methods to suppress the female hormones or surgical treatment to destroy or remove the disease or the affected pelvic organs. Medical treatment is only of benefit in mild cases'

For someone with mild endo that has only affected the pelvic lining (peritoneum) with perhaps pain just at period time then it may be that these drug work like magic and stop all the pain as it may be that these early lesions depend on oestrogen from the ovaries. But in considering severe disease the pain is often month round and of a different type. Severe endo is characterised by dense endo adhesions (fibrosis) that can crush or even invade nerves and they stick organs and other tissues together, sometimes as hard as concrete. The pain from this can be utterly debilitating, sometimes preventing the person from being able to move, and common sense should tell a gynaecologist that just altering circulating hormone levels is not going to stop this pain. So the tragedy of this test and the statement you have given is that so often those who fail to respond already have severe disease that was never going to respond to this treatment. But they are told they can't have endo.

Going forward, first of all you need to be under a gynaecologist with a special interest in endo. We had a new ESHRE guideline published in February of this year and the treatment pathway is clear. A lap is no longer the gold standard for diagnosis, there should be a scan first. If a scan shows evidence of deep endo then referral should be straight to a specialist endo centre. So you have had the MRI which I assume showed nothing so the next step is either medical treatment or a diagnostic lap. I should ask yourself what would having zoladex prove given what we know about how flawed it is as a test it is. It is your choice entirely whether to have it or not but you have a right now to a diagnostic lap by someone qualified to carry it out.

[Bluehusky96 in reply to Lindle]

Thank you, thats really informative. I've had a laproscopy but from a general gyne. And theyve said that because they saw nothing, and the MRI was clear they do not think its endo.

So this is where its causing confusion. My symptoms 100% line up with endo, but due to it being pain in the pelvis, the gyne is saying well it could be gastro or a urology issue. So he seems to think the Zoladex will help identify what speciliaist help i need...

Its so hard when hes asking me what i think they should be doing, and laughing at me when im querying things such as, do they have a specialist interest in endo. He claims all gynes know what endo is, how to diagnose it etc. And i try to reassure him im not questioning their compentence or professionalism.

Its been a year now of this pain and its so difficult to know what is right or not with regards to next steps