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Hi,I have recently been diagnosed with stage 3/4. Previously tried different pain killers, coil etc. Pain killers don't even touch the

Pedlar76 profile image
5 Replies

Hi,I have recently been diagnosed with stage 3/4. Previously tried different pain killers, coil etc. Pain killers don't even touch the pain.

I have been bleeding everyday since the coil was fitted. I want to have surgery but my Gynocologist didn't seem keen. How can I push this?

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Pedlar76 profile image
Pedlar76
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luthien profile image
luthien

Hey,

Push for a referral to an endo specialist, they'll be keener to actually perform surgery!

Have you had your diagnostic lap or is it just suspected? It can only be diagnosed by lap and again I'd suggest an endo specialist as they'll look at other organs such as the bladder and bowel for any endo there whereas gynae will just look at the uterus, tubes, and ovaries.

Check out the NICE Endometriosis website for a guide on what the specialists should be doing. This means you can push for treatment you want.

nice.org.uk/guidance/ng73

Perhaps your coil doesn't suit you, it doesn't work for everyone; side effects do include bleeding. In addition it can take up to 9 months for it to settle so gynae quite often will make you wait until then before they consider anything else.

You're doing the right thing by questioning stuff.

Pedlar76 profile image
Pedlar76 in reply to luthien

Thank you. I haven't had a lap. I've had ultrasound, hystreocopy, MRI and Biospy. The endo seems to have been diagnosed from the MRI, (the summery said enlarged right ovary with several cysts, serous cystadenoma, Adenomyosis, Endometriosis and adhesions in the pouch of Dougles….not sure what this means?. Gyno has suggested I ask my GP to refer me to Endo clinic, but I'm still waiting on biopsy results, so they won't refer me until those results are in. Do you know how long Biospy takes? It will be 3 weeks tomorrow.

luthien profile image
luthien in reply to Pedlar76

pouch of douglas - recto uterine pouch - the bit between the uterus and bowels. It's a common place for endo.

I'm not sure regarding biopsy results but if they're meant to go to your GP then it'll be worth calling up and checking as sometimes they don't call to say you're result are in. I would think three weeks is more than long enough.

Pedlar76 profile image
Pedlar76 in reply to luthien

Thank you, just received them this afternoon, benign, which is great! Just got to get the right treatment now

Lindle profile image
Lindle

Stage 3/4 must only be treated in a tertiary endo centre by advanced excision surgeons. Severe endo can often be diagnosed by clinical exam or scans and is actually often missed at a lap. Will pm you as to the treatment pathway for severe endo.

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