Help! Stage 4 endometriosis diagnosis

[Mysterywomen]

Help! Just been diagnosed with stage 4 endometriosis. During lapascopy my consultant could not remove the cyst from the ovary due to large amount of endometriosis and it’s on my bowel too. Been given Zoladex for next 4months. Now referring me to a endo specialist. What are the next steps? Will I need a a hysterectomy?? Bit overwhelmed at moment...

[luthien]

It's good that you're being referred to an endo specialist.

I know it's all not the best news and can be a bit overwhelming, but just try to take things step by step. You've been put on hormones which the idea behind is to help with your symptoms, if they do help your endo specialist may keep those going. You can have a chat with your endo specialist about the extent of your endo, and what he/she recommends.

It's a good idea to do some research, so here's the link to the guide UK specialists should follow for treatment of endo:

nice.org.uk/guidance/ng73

Also check out the Endometriosis UK Charity documents:

endometriosis-uk.org/inform...

endometriosis-uk.org/public...

Your endo specialist may want to start from the beginning so have all your symptoms on a page a month type calendar. Include: pain levels, location, medication, periods, heaviness, tampons / pads, additional things like hot water bottle days, sick days, bowel movements, any other odd symptoms, if you know your ovulation days add those in. It'll help the specialist know whats going on month by month. If you can't remember don't worry.

Regarding endo on your bowel; your specialist should talk to a colorectal / bowel specialist; usually that's someone they normally work closely with.

Treatment; don't worry from the information above they shouldn't jump straight to a hysterectomy as that doesn't sort endo out. They'll most likely ask you what you'd like to have sorted, as in what symptoms, so make a list of what bothers you the most. You'd like excision surgery as this removes the whole bit of endo, other methods such as ablation and laser are effective too but they tend to be more for surface endo. Excision aims to reduce symptoms by about 50% so it's worth considering what symptoms most bother you.

You can decide what you'd like to do; surgery to remove endo, hormones to help symptoms or both. In summary endo will continue to grow and spread, which can perforate organs so surgery should always be considered but it doesn't have to be right away. Some women find hormones really help, some simply don't want an operation, some would like to decide later, others it's that bad that they just need to remove the endo and then decide, some have the endo removed and have hormones. It's really up to you! So don't feel pressured, or that you have to decide in your appointment

Have a list of questions sorted too:

What treatment do they usually do in your case?

How many women do they re treat / see again after the above?

Do they perform the operation?

What is their waiting list like?

Amongst other questions you have too.

Oooh happy to help out if you have any further queries, but we're all here to help so if there's anything you're not sure about / want more information just ask!

I've put a link to my post about myself below as I've had endo on the bowel too, it may help answer some questions / explain my thoughts!

healthunlocked.com/endometr...

xx