Hello!

[sineadoc45]

Hi,

I’m Sinéad, 38 years old and I’ve been diagnosed with endometriosis just two months ago thorough a scan. I have evidence of endometriosis and my ovaries are fixed/stuck in place. Waiting for gynae consultant appointment.

Pain has spiralled over the last month and especially over last week. I’ve fainted twice this past weekend and ended up in a and e on both occasions.

GP is trying to get me seen more urgently.

I’m quite confused and scared about what might happen next and I’d be so grateful for any advice.

Various a and e doctors have mentioned contrast scans, or operations yet nobody explained any of it to me.

I’m off work and on painkillers and worrying a lot!

[endokicker1 Administrator]

Hi Sinead,

I am so sorry about what you are going through. Endometriosis, though such a common disease, seems to cause a lot of confusion with doctors and that's because so many of them are not properly aware or educated about it.

I experienced what you are going through so I know the feeling. Is your GP getting you to see an endometriosis specialist? Since you have been diagnosed, make sure that they dont send you to a general gynea. Insist to be sent to an endometriosis centre. The website BSGE.org has all the accredited centres and you can find one closest to you and ask to be referred there.

Most times, the first thing they want to do is offer you pills to manage symptoms but once you see an endo specialist, you can discuss the best treatment option for you.

Excision surgery is the gold standard of endometriosis treatment, and since you have your ovaries stuck, they will also try to remove the adhesions and cut out the endo from the roots. Make sure they dont do ablation surgery on you. Ablation is when they try to burn off the endo instead of cutting it out. It causes a whole lot of issues and also the endo comes back most times.

While waiting for all this, I recommend that you continue to educate yourself. Nancy's Nook, a Facebook educational group has a lot of information, including details of specialists that can perform excision surgery.

I also suggest a few dietary changes. Many of us benefit from removing gluten dairy and sugar from our diets and feel a lot of relief. You can try that. Also keep a food and symptoms diary to see what foods aggravate your pain.

I recommend supplements like iron, magnesium, zinc, vitamin d, evening primrose oil, fish oil. Many endo sisters lack these vitamins and minerals and we truly need it. I also find relief from drinking yarrow tea, red raspberry leaf tea and ginger tea.

I know this can feel overwhelming but I need you to know you are not alone. I am here for you through it all.

Please message me if you ever need more information and any help.

I wish you all the best.

Xx

[sineadoc45 in reply to endokicker1]

Thank you so much for all this information, that's so helpful. xx