Stage 4 Endometriosis

[Kelly313]

Hi i have stage 4 endometriosis i am 32 and having a complete hysterectomy in July. My bowel is stuck to my womb and i have been told i have a servere kinking of the bowel too. Just wondering has anyone ever suffered with the same and can you actually claim pip for it.

[confusedandworried]

Hi, I'm sorry to hear what you are going through, particularly when you are still quite young.

Can I ask why you are having a hysterectomy?

The reason I ask is because Hysterectomy rarely cures endo, especially if endo is not thoroughly excised in the first instance. Endo can, and often does, effect other non-reproductive parts of the body including the peritoneal lining, bowels, bladder, ureters and in rare cases even the kidneys, lungs and brain. So if endo in other areas remain unaddressed then symptoms will continue.

Furthermore oestrogen is considered to play an important role in endo. Even after hysterectomy our body's can continue to produce some oestrogen meaning existing endo continues to grow and there is the potential for further endo to materialise.

As endo is so complex specialist endo centres were set up nationwide, particularly for women with more advanced stages of the disease. General gynaecologist unfortunately tend to lack the skill and expertise required to (a) recognise endo in all its different forms and (b) thoroughly excise it (ie cut it out) - excision surgery is considered the gold standard for endo treatment. Burning it off, particularly severe endo which tends to be deeply infiltrating, is ineffective in that all it does is remove the top. It doesn't remove it from the root meaning, much like a weed, it tends to grow back.

Women with endo have the right

to request to be referred to anyone of the BSGE accredited endo centres nationwide. Are you being seen by such a centre?

If not you can find the list of accredited centres at the following website by clicking on the tab labelled "Endometriosis centres" then "BSGE Accredited Centres":

bsge.org.uk

Your GP may not have heard of these centres, despite NHS guidelines existing recommending referral to these centres. Mine hadn't until recently when I printed off the list myself and gave it to her!

Obviously I do not know all of the facts but if endo is the only reason a hysterectomy is being considered please do not rush into this. Take the time to look at all your options and get a 2nd opinion from an accredited endo centre.

Best wishes, Jo

Best wishes, Jo x