Janeylou

Sorry to hear your suffering. So tough for you, hope you have a range of pain meds, I’ve found suppositories good for me.

In my time with endo I’ve had to see urologist due to endo blocking my ureter & kidney so they had to do a joint op. I did get annoyed as my endo consultant did his bit & I was over to urologist but he had done his bit I suppose & any issues he sees me quite quickly. Joys of nhs & there figures I suppose.

I’ve got it all in my bowel so waiting on gastro now but it would be joined up working with the endo guy as that’s the main cause!

I had my left tube removed December then further surgery March to reconstruct my bladder & ureter so if your ovary needs to come out they should do it, you can live with one. I’ve had a surgery nearly every year since 2011, so it’s possible to have multiple surgeries.

Sounds like it’s about the professionals working together to tackle this situation. You can’t b expected to carry on, they need to operate.

I hope they resolve it & sending you healing & positive thoughts x

RebeccaJB in reply to Janeylou

Sorry to hear about what you have and currently going through.

I understand the two teams working together but who i seen is a Urologist who is not specialised in Endometriosis, he stated he can only work on it a small amount. I was abit frustrated as i was told i was being refurred to an Endo Clinic but this has not happened. I just dont know where i stand. I am worried that i am just going to be left in all this discomfort for months now untill something is actually done.

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Christin_a

Hello Rebecca

Are you in the UK? And do you know where endo was found? Just wondering if you meet the criteria to be seen at a bsge centre. You are entitled to in the UK a second opinion by a different gynecologist.

Do you know why they are saying that another lap would mean removing your ovaries? I saw that you said you had a cysts on one ovary but that shouldn't mean removing the ovary just removing the cyst (not just draining it as it'll come back) but removing the sac the cyst was in too

This isn't something I've had before but is something I've read other women have had to deal with gynecologist says as x didn't work I'm going to send you to this other area of expertise as I don't think it's anything to do with me..

RebeccaJB in reply to Christin_a

Hello

Thank you for replying, yes i am in the UK, i was told on my last appointment by my consultants junior doctor that i was going to get refured to james cook hospital at the Endometriosis Clinic to be seen. But then yesterday my consultant has changed the plan and went with refurring me to gastro. Last year when i had surgery he stated i had Endo and leasions around my womb and bowl and there was a cyst removed from my right ovary but my ovary does not function now but no other scans have been done, i was admited to hospital 6 weeks ago for the pain and i was just on pain medication and kept me comfortable and nothing was done.

I am just at my wit ends really as this is effecting my life massively now and i am just worried it maybe getting worse.

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Christin_a in reply to RebeccaJB

So based on endo being on your bowel I believe you do meet the criteria for being referred to a bsge centre. If you do then your gynecologist should not be making decisions like that. Your gp can refer you if you surgeon won't.

These centres are there for people with more surgically complex endo such as being on the bowel as they work in tandem with other surgeons who can safely remove it from those areas.

I would either contact your surgeons secretary and tell them that you want to as discussed before be referred to the endo Centre and you believe you meet the criteria as did your surgeon at one point. Or go through your gp (in the UK you are entitled to a second opinion so you could use this and stipulate who and where you want to be seen).

I know its difficult but try and remember that when you are in the right hands it won't be as difficult as this to get the help you need.

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