Gyno says Endometriosis is 'cured' .... despite constant pain

[Abbiebleh]

I'm 22 and have always suffered with my menstrual cycles - I was wondering if anybody has any advice or can relate?

I miscarried 4 times and had multiple ultrasound scans. Eventually I had a lyposcopy in November 2017 and was diagnosed with endometriosis, which they lasered away and installed a mirena coil at the same time. Pain consisted and so from April 18 I was put on Monthly Zoladex injections for 3 months. I revisited the gyno to review how I got on September 26th and despite no periods I'm in agony - stabbing pain from my belly button to my pelvic region, stabbing pains in my hips, pain from my cervix, painful sex sometimes, and a general pelvic 'ache'. My gyno said that as I've had hormone treatment, had the small spots of endo lasered away, i no longer have endo to cause pain and could be discharged?! She's writing to my doctors to refer me to a grastronicolgy specialist as apparently my pain could not be related to the disease which I 'never had bad' according to her. I'm currently missing time from work I'm in so much pain, despite being on prescription painkillers and having had my diagnosis for this pain taken away from me and completely lost! Some days I beg my other half to take me to A&E I am hit that badly by symptoms

[weekari]

This is awful. I'm so angry on your behalf. I'm assuming that this Dr is not an endo specialist? bsge registered? Are you in the UK?

Unfortunately, there is no 'cure' for endo. Hormone treatments only aim to manage symptoms, the disease can still spread while you're on it, though it may slow it down. It certainly doesn't cure it.

As for your laser surgery, this is also not a cure and endo often comes back. Often people say that excision surgery is preferred, that's when endo is cut away but should be done by a specialist.

As for telling you that you never had endo that bad, this is such an awful message to be giving you. It's completely undermining your experience of pain. The severity of endo didn't match the symptoms anyway. You can just have a tiny patch but be completely disabled by it or you can be completely riddled with it and not even have any symptoms.

Your consultant didn't seem to have a good knowledge of endo. I think you need to get a second opinion from an endo specialist.

If you're in the UK, then you want to try get to an endo specialist centre. If you're in England, your gp can refer you directly. In other places, you need your gynae to refer you.

There is a national guideline for managing endo called the nice guidelines. This is what the drs should follow for your treatment. You can access it yourself online by Googling 'nice guidelines endometriosis' this will help you know what to ask for.

I hope some of this helps. There is definitely a lot more that can be done for you.

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