Is it safe to come home…

[Endrocoops]

So in May I moved to the US (intending to come back to the UK soon enough)

And In May I had a cyst that the doctors here kept a close eye on and within six months I was diagnosed and treated for my cyst and endrometerosis that I didn’t know I had (stage 4). I’m not sure I would have ever known I had it if I remained in the UK as it’s often put down to growing pains or digestion issues. (Had things like stool softeners given to me in the UK when infact I had endro in that zone causing me pain).

I’m worried that if I come back to the NHS that my future laparoscopies will be insain waitlists or being ignored again.

Do people have positive wait times for treatments once diagnosed?

(Some background info is that I’m not paying this treatment privately as it’s covered by the military health care here.)

thank you in advance!

[TogetherWeAreStrong Moderator Endometriosis UK]

Hi Endrocoops I understand your concerns regarding waiting list times and potentially struggling to be heard. As you have been an NHS patient recently you will be aware of the effect that COVID-19 is having on matters such as waiting times, but even prior to this, they would rarely be quick! I have been diagnosed since I was 19 and I am now 46 so I have a number of years facing both of your concerns, but I am pleased to say I feel very much heard now and not at all ignored, as for speed of appointments, I have not really seen any progression.

[BookBimbles]

I am both a patient and work for a tertiary hospital. I only waited around 6 months from August 21 to February 22 for a laparoscopy, but only because I got in on a short notice extra weekend surgery date. Probably funded by winter pressures money, and because they had the staff willing to do it. Senior specialist staff seem to listen, have appropriate consultation skills. However it’s been hit-miss with the wider team of junior staff. And waiting lists have worsened.

Over this year the waiting lists have grown, and the NHS is still struggling with staffing. The UK is starting to see a resurgence of Covid and flu this winter, and staff are just getting vaccinated again for these. There’s increased poverty going to put increased strain on the NHS, particularly with no clear effective plan to boost social care. It’s not going to get better over the next few months. The new Health and Social Care secretary, so far, does not seem to have announced anything practical. Perhaps if they recruit more staff from abroad, and pay lower paid staff enough to compete with supermarkets… ask again after winter!

[Endrocoops in reply to BookBimbles]

incredibly informative thank you! It seems so wild when my operation was booked and taken within three weeks. With both your reply and the prior I think I will try my best to have what I need done on the US side and have a fully hysterectomy /egg removal before I come home. Sad to say it but it seems I can’t depend on the UK when reading everyone else’s experiences.

Thanks again

[BookBimbles]

That does sound incredible to have had an operation so quickly for a cyst and to find endometriosis. I think I waited 4 weeks just to have an ultrasound.

I should say for the UK, as long as your eligible, there’s no cost of course, including for the BSGE tertiary specialist centres for endometriosis. I’ve read in the US, with different health insurances, they’ll only pay for certain things and so not all endometriosis specialists will take insurance. But sounds like you’re sorted.

Just wondering, if you have egg retrieval in the US, how will that work if you’re later in the UK, and if you have a full hysterectomy? Is that for surrogacy? And will your military insurance cover excision surgery of the endo, as a hysterectomy doesn’t treat the endo. And if you have a hysterectomy, then and are on HRT, I’d just check the brand / type is available here in the UK - and bring plenty with you …as there’s been an HRT supply issue (that might be global).

I should add some people are reducing wait times by paying privately for an initial consultation, to see a endometriosis specialist consultant, who does both NHS & private work. Then the consultant will put them on their NHS waitlist for surgery. It only really cuts out one part of the wait.

all the best!

[Endrocoops in reply to BookBimbles]

you incredibly strong person! Four years sounds imaginable

Yeah if it weren’t military insurance that covered me I could still be running around trying to find a provider that accsepted my insurence and paying deductibles and all the in between! The military health care is pretty good and has zero cost to me providing that I get my prescriptions on base and not at my equivilant local boots. They sent me direct to a doc who diagnosed me and did the surgery herself like she was the specialist for endro in her field. So it’s nice my base gp sent me direct to the endro folk for sure.

I would hope to have one kid if I’m lucky before I have the hysterectomy and my reason for doing it (even though it’s not guaranteed to work) I’s that my mum has never had a flare up again after having her eggs and womb removed. (Hers was much worse than mine by my age). My docs offered ivf for me but that would be at a charge to myself I think it’s about 9-15k here. It would be interesting to know what the UK do with ivf I imagine 50 year waitlist 😅😅 im not keen on storing eggs long term with americas laws all over the place (one state gives tax cut on eggs as they see them as people and destroying them would be illegal…. It’s a messy country honestly

On the note of HrT I can also always pop back to the US and get more as I’ll always be covered. But equally that would ammount to a big cost in flights! Not ideal but I imagine I won’t have the hysterectomy for a few years yet I guess it depends when it starts flaring back up for me I hear people need follow on surgery 2-5 years on average is that right?