Advice??

[GreenQueen-99]

Hi all,

Just wondering if anyone has a bit of advice? Long story short, I was diagnosed with endometriosis following a laparoscopy in July 2020. This was carried out by a non-endo centre with a private surgeon due to covid and NHS waiting lists. The treatment I had there was not the best, the surgeon didn't ‘believe’ in endometriosis, told me I was stage one, despite it being ablated from my ovaries, womb and ligaments. I was in so much pain following, but was still discharged same day.

3 years later, I’ve had 2 admissions for pain management in the space of a year. Sex remains painful. Periods remain painful despite the coil, my sickness in work has triggered stage 1 due to time off I’ve needed to have due to pain. I saw my consultant May 2022 who suggested being put on the surgery waiting list. Fast forward to last month, I finally saw the Registrar (of my original endo centre) who was extremely unsupportive, I cried the whole appointment. She basically said if I am not going to accept further hormones (I was on the pill for 10 years and it really messed with my emotions and body), and I am not going to attend the pain management group ( it is like an AA meeting, which I have to commit to for 8 weeks at a time, which I cannot do as a nurse!) and she strongly does not recommend surgery as she thinks it’s not beneficial. That I just have to ‘live with it’. The whole appointment she focussed around me not coping with pain when there was other stuff I wanted to discuss like sex, smears etc.

Any advice on what to do next???

Thanks in advance 😊

[Lindle]

When you say ‘original endo centre’ do you mean you were previously with a centre on the NHS prior to the private surgery in 2020 when you were diagnosed for the first time?

Had you been referred to a centre but had the private surgery before seeing anyone there? What I’m a bit confused with is that you would only be accepted at an endo centre if you already had a diagnosis of severe endo or if it had shown on a scan. Had you had a scan that showed it on your ligaments?

Is the female you saw more recently one of the surgeons listed at a BSGE centre?

[Cailleach]

I agree that it would be helpful to know if you were being seen at specialist endometriosis centre or in general gynaecology. If it was in gynaecology it may be that you should be seen at a specialist centre.

If you don’t already have them, it might be useful to get copies of the correspondence from the consultant you saw in 2022 and the registrar you saw recently, because it seems they are saying different things. You could query that with them and also ask why surgery is now being discounted. Your GP might help with that or PALS?

I am not clear what hormone treatment was being offered, you have already been on the contraceptive pill, which is unlikely to help much at this stage, and you have a coil in situ ( which doesn’t seem to be helping much either). Was it something to put you in the menopause?

Have you seen a pain management specialist, given the level of pain you have been experiencing? I found this very helpful, you would need a GP referral and to wait, of course.

The Pain Management course is probably designed for people with chronic pain to help with strategies to cope with it ( if it’s like the one I did). I wouldn’t discount it and it’s not like AA! It shouldn’t be an alternative to actually treating the cause of the pain of course. If you did want to go, as it is recommended medical treatment, you should be entitled to time off work to attend.

I am assuming you work in the NHS but a lot of this will apply to other employers. If you are already starting on the sickness absence process, then getting union representation would help. They can give you a lot of useful information about your rights. You can also ask to be referred to Occupational Health and they can discuss with you any changes to your hours, shift patterns, work duties etc that might help you.

You could ask your GP to refer you elsewhere, or you could pay for a private consultation with an consultant who specialises in endometriosis yourself. You seem to have been really unlucky in the doctors you have seen so far, there are good ones out there xx