Advice needed for returning endo please!!!

[frasere1]

Hi everyone,

I had surgery last May for endo, and followed up by the Zoladex treatment and did everything I was supposed to and it was all going well, up to 2 months ago when the symptoms started again!

Since then everyday has got worse, I am in so much pain, more than before I had surgery, and waiting to be referred again as the consultant I saw said I had to start again as he had technically discharged me!!

Has anyone had this happen to them?! And any other medication or herbal remedies that have helped!?

Any advice would be great! Thanks xx

[S-Joys]

Did you have a follow up appt with your doctor? I have mine scheduled for 3 months post op so I'm surprised to hear you have been discharged so early. Have you got an email or anything for them to maybe drop him a line? (Gosh he/she would probably hate this suggestion but I often request one when I see consultants).

Do you know how long the wait is to see them if you start the process again? I would keep calling for cancellations too. Really hope you get some relief soon.

[frasere1 in reply to S-Joys]

Yeah I had the follow up at the beginning of this year! My surgery was May 2016 sorry if I caused any confusion!

I requested to see him, but my appointment isn't for another 2 months! And having to start all over again is just ridiculous!

[S-Joys in reply to frasere1]

Oh gosh I do believe once you have an endo diagnosis you should be given regular check ups for life (idealist I know!) as the recurrence rates even after surgery are still high and I find you can be fine one month and not the next. For a disease which effects so many, it's shocking how often we are dismissed or put through so much waiting. Best of luck xx

[frasere1 in reply to S-Joys]

Oh I didn't realise that! I will definitely be suggesting it in my next appointment! I didn't realise quite how high the recurrence rates were, until now!

Thank you xx

[S-Joys in reply to frasere1]

In fairness I was told there was such a thing as an endo clinic where you get to see a doctor every 6 months however not sure if this happens in practice as I know how much the NHS is strained. I was also told just to see the specialist for a first appt there was a 14 month wait so conflicting info!

I went to a really useful endo conference this past weekend run by EAI, and found out so much more about this disease. Spoke to some ladies who had gone through over 14 surgeries to over 20! My husband and I were shocked. Seems ablation surgery has a very high recurrence rate so excision is a must, although even wth excision it can grow back. Argh

[Miche49uk]

Hi Frasere wow I'd forgotten about zoladex! I refused it and saw an acupuncturist in the end, I'd personally contact consultant? Everyone is different, I saw the acupuncturist as I had severe sciatica and it turned out she used to be a gynaecologist!! So she had me swimming daily, eating porridge (she had another friend on millet so I got off lightly) and she got my faps between periods to 28 days from 24.. I also have PCOS. So I turned my back on consultants and once she gave me the green light to TTC bingo, my daughter is now 10..

[Geordie-Girl78]

Hi there - I've had my first excision surgery recently and have also been asked to have zoladex. Please could you tell me why this is necessary? Thanks ☺️