Diagnosed with Stage 4 next step Synarel - Endometriosis UK

Endometriosis UK

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Diagnosed with Stage 4 next step Synarel

chezachuck profile image
3 Replies

Hi all.

Had my follow up consultation with my gynaecologist on Friday following on from my lap and the news wasn’t great.

I have severe endo (stage 4) which has basically fused most of the organs in the left side of my pelvis. Was shown my photos and the ‘disease’ was everywhere and the doc said that as I have probably had it since I was a teenager ( I am now 42) it was deep and very wide spread. After my mini meltdown in the office (blubbering from relief and shock) the doc told me my only options really are a hysterectomy. When I had my surgery the put in the Mirena but my pain is so severe he has now prescribed Synarel for 6 weeks to support me whilst the Mirena gets to work and also a try before you buy to see how my body reacts to having my ovaries shut down and whether this impacts my symptoms positively before I contemplate the surgery.

Has anyone else tried this sort of approach? Having had constant pain now since age 15 I am almost at my wits end so I am hoping this medication can give me some level rest bite.

Would appreciate your thoughts and guidance. Xxx

3 Replies
JOSANDY40 profile image

Well having everything removed may help. Firstly there will be issues with the opp and maybe problems but it is unlikely you will get rid of the disease. Especially if it set up self contained pockets in other areas in the body. I have stage 4 +. My surgeon has refused to operate anymore. Only if my life is in threat. She said I would loose my bowel, bladder, repro and part of stomach. She couldn't promise anything. My body seems to convert or override hormones to create what it wants. There are several glands in the body that can make different hormones. There is little know about this but the Thanus in the brain is being questioned as when the pituitary gland is switched down by a drug like Zoladex it has been noted that hormone s at lower levels are still current! x

S-Joys profile image

I was diagnosed with stage 4 endo with bilateral cysts and on my bowel and in the summer had excision surgery. Its not a cure and I'm likely to need surgery in the future as there's no guarantee but worth speaking to an endo specialist as I've heard having a hysterectomy is not the answer as pain and endo can continue post menopause. Did they remove any during your lap? Or was it solely diagnostic? Sending my best wishes xx

chezachuck profile image
chezachuck in reply to S-Joys

Thank u both for your replies.

The consultant didn’t remove any of the tissue as it was just a diagnoses op plus he said it was pretty deep set and had been there for some time.

I guess I need to see how the medication impacts and make a decision from there on the next steps. This condition is confusing nightmare!!!!!!

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