Help with treatment option given!

[Sarahpryor1]

Just wondering if any of you have been put on triptorelin injections as a way of treatment and if so how did it effect you? I have endo but also suffer terrible heavy periods which have decreased my iron levels dramatically. My gynecologists has told me a hysterectomy is the only thing guaranteed to help but as I'm only 31 is reluctant to do it. I have 3 kids so I dont see why however he wants to try this first. I get my first injection January and was given no real info just a little leaflet with very little information. I have heard horror stories about this treatment so I'm so nervous. Can anyone help? X

[luthien]

I've not had it but a quick google of the BNF from the NICE website suggests it is used to treat endometriosis:

bnf.nice.org.uk/drug/tripto...

If you google it then it does suggest a recommended dose, timescale, side effects. It does say it shouldn't be repeated though.

It's interesting that doctors suggest a hysterectomy or hormones as according to the Endometriosis UK website these methods of treatment do not get rid of endo, they can slow growth down but you may still have all the symptoms and it will still grow:

endometriosis-uk.org/endome...

This suggests that one of the best method of treatment which I personally agree with is excision of endometriosis via a laparoscopy; as this removes the endo dramatically reducing symptoms and of course regrowth.

endometriosis-uk.org/sites/...

Are you seeing an endo specialist; usually endo specialists will want to visually see how much endo there is and what it's doing via a laparoscopy before suggesting hormones. General gynaecologists don't know much about endo therefore will suggest hormones / hysterectomy / have children as these used to be thought of as the best ways to "treat" endo, before keyhole and excision became common practice. Yes excision still carries a risk of regrowth as with all of us whom have had it but the reduction in symptoms combined with all visible endo removed is a good starting point to having a normal-ish life for a while compared to hormones / do nothing which could allow endo to grow unchecked sticking organs together and perforating others, resulting in emergency surgery either due to increasing symptoms or rapid onset of pain, the surgery to "fix" this and excise endo could be more invasive. I don't mean to scare you, just being honest; this is what my endo specialist explained when I freaked out at the thought of an operation.

Personally i wouldn't opt for the injections; the thought of the side effects as well as endo symptoms means you wouldn't know which symptoms are from what. I'd suggest seeing an endo specialist / asking to be referred to one for a second opionion as it seems your gut instinct is to question the information you've been given.

The BSGE lists accredited endometrisis centers which you can ask your GP / gynae specialist to refer you to:

bsge.org.uk/centre/

Remember it's your body, so do what you feel is right. Read up about the hormones vs excision and see which you prefer / what fits your lifestyle.

x