New diagnosis...SO many questions?? Stage 4 endo

New diagnosis...SO many questions?? Stage 4 endo

After many years of debilitating Period pains I thought this was normal (opps!).

My wife and I started fertility treatment in 2014 and since then I've had problems conceiving, with my latest HSG showing occluded Fallopian tubes and a polyp. I finally had a laparoscopy & hysteroscopy on 31/05/17, they removed my fallopian tubes and polyp. They found I have "kissing ovaries", my womb is stuck to my bowel and there's general pelvic inflammation, subsequently i have been diagnosed with severe Endometriosis (stage 4). Yesterday i started Prostap injections and my consultant wants be to take/ have these for 8 months...

Can anyone give advice on how I can optimise my health (going into menopause) and any tips? I need to sort a healthier diet out (don't eat meat, fish or eggs eek so need to work around this) and wondered if I should ask for cholesterol blood test via my g.p?

On the upside my op site is healing really well and period pains are touch wood ok at the mo (probs strong co-codamol and ibuprofen helping). Also I haven't had much information on all this any further info/ links that can be recommended? thanks in advance...

11 Replies

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  • I'm sorry to hear things got to the point they did before you got the intervention. You sound pragmatic and positive. It's quite inspiring, I've just done a post about feeling sad. Maybe I should take a leaf out of your book and be more solution focused so if anyone answers your questions I would be interested to see what they say so I might be able to apply it to myself. Sorry I'm short on advice other than hot water with a sprig of fresh rosemary in and some brown sugar for taste I was told helps with women's health from a herbalist. I also go to accupunture weekly which helps with a multitude of things. Sending warm wishes to you going forward x

  • Thanks for your reply, early days for me i'm sure the shock/ emotional response will kick in soon. I'm already on medication for low mood and think that's took the edge off xx

  • If you are in the UK, you should have been immediately referred on to a BSGE accredited endo centre as severe endo can't be treated in general gynaecology. Severe endo rarely responds to medical treatment and in any event can only ever be a temporary fix. I should get a referral - it is direct through NHS England and not through the CCG.

  • Thanks, very interesting! I'm in the UK but Live in Wales?? Maybe different process do you think? Not sure if would be eligiable through NHS England?

    Was quite shoked the consultant doesn't want to see me for 8 months now? then I thought wil i need another Lap becuse how else will he know the medication has done it's job? not sure what the best course action is?? xx

  • Ah yes, NHS England won't apply for the referral process but the RCOG Standards for Gynaecology Care issued in 2016 make it absolutely clear that all women in the UK must have access to the same treatment options for conditions that require specialised treatment, as severe endo does. This is covered at part 3 (page 35). I'm not sure of the referral process but your gynaecologist should be.

    rcog.org.uk/en/guidelines-r...

  • Thank-you, this is very informative and to be honest i have felt I need more information because "here take this and see you in 8 months" is not very reassuring...

  • The list of centres is here:

    bsge.org.uk/centre/

  • I'm wondering if the consultant didn't refer me onto a clinic because he didn't talk of surgery for me. I'm keen to know the full extent of my stage 4 endo as i was half alseep/ in shock when he explained it all. I plan to contact for my records or at least a report on it all x

  • If you look at 1.5 of the standards above they are required to give you a discharge note before leaving with operative findings on and you GP should get a report within 24 hrs. It actually acknowledges that after surgery women are unlikely to take much in. I would take them to task and ring referring to this requirement and asking for the discharge note to be produced straight away. Re your point about surgery, they shouldn't have had to talk about anything other than the need to now refer you to a tertiary centre, x

  • discharge letter and copy i had mentions op to remove poly and fallopian tubes with an incidental findig of severe endo and that they'll write with folow-up. If this is the copy the g.p gets they'll know less than me... ;-/

    Ok thanks.

  • Calcium and vit d will really help you! Supplement if you cant get 20 mins of sun a day and dont eat a healthy balanced diet. Menopause really effects bone health! Im currently on my second course of Zoladex! Just same as anything else really, try to eat healthily, drink clear fluids and exercise. It wont cure you but it will help!

    Good luck

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