I’m out of options but should I consider private or not?

[allyshajohnson]

Hi, so I’m just wondering as I’m in a difficult position atm….with little options and difficult choices to make….what should I do cause I spoke to two people one being an ex NHS worker and another a ex PALS employee and have both stated for me to put a complaint to PALS which I’m considering, however I can’t help but thinking that they won’t do anything…but they insist that something must be done cause it’s the law. About private due to my situation it seems like thats the only option for me due to the limited options both from my gynae and GP. It seems as predicted that they never could do much for me especially as my gynae, said no to coil due to be being a virgin(but I don’t want it due to risk of worser pain), pelvic floor therapy because im a virgin and other hormonal treatment due to the early onset of osteoporosis due to my low weight. He also initially refused MRI scan so I had to insist but finally got a diagnosis for adenomyosis but refused to have MDT check over my MRI due to not feeling it necessary despite it being known that MRI doesn’t pick up everything and without MDT you can miss. It’s necessary as I still sense that endo could be present as well due to the nature of the symptoms I’ve been experiencing. Only option he gave me was combined pill of zoely, femodene and marevelon but my family and nutrition health practitioner are all against the pill as with me, due to the risks especially with it disrupting my cycle and mental health, I have a history with depression and GAD,etc. I’m not eligible for lapro due to low weight and all NHS dietetics have rejected my case for nutritional care. My gp said she can’t do anything about that. :/

In the early hours of Monday morning, I had a terrible episode, the worst one in a while, which led me to call 111. A&E really couldn’t support me as they only recommended NSAIDs which I’m not able to take and only said if it gets worse call back or go straight to A&E. Later that morning, my GP had called me in response to 111. The only thing he could do was suggest pill or paracetamol….he didn’t even seem concerned of the risks… :/

I asked my dad if he still takes NSAIDs and he says no due to having had a history of ulcer, relfux and a complication from an operation, back in the 70s while treating the ulcer…I asked if he takes anything else instead and he said no just paracetamol cause there wasn’t anything else for him to take. :/ it got me concerned cause it seems that way for him too.

Due to all of this I’m considering going private but the two respondants both ex PALs employee and NHS worker both stated that private isn’t ideal as you’re just paying for experience and that they’ll refer you back to the NHS and that I’m “wasting time”…and that all GPs etc work with the NHS. The NHS was also dealt with endo as well and said that private can take just as long…I said I beg to defer as not all do work with the NHS and some are retired from the NHS and there had been some stories of others having better treatment and faster diagnosis with private care. Yes there are exceptions but that’s with everything I suppose. Im aware that private also work with NHS but I’m also aware that some done either however they believe that all do. I don’t think so. Based on what I’ve heard and seen. 🤔

So what should I do? Still go ahead with private to find a endo specialist or not? .my gynae is a Consultant Gynaecologist aka a “Consultant Obstetrics and Gynaecology” as well as an “Advanced laparoscopy ATSM Trainee” who is also a part a group of “Senior specialist registrars” that have an “interest” in endometriosis. So I’m not convinced he’s a endo specialist, especially if he is a trainee…

im are that both private and NHS are separated and that you can’t always integrate in terms of treatment, however I do plan to have a private Endo specialist look over my MRI scan via MDT.

And I don’t plan to leave the NHS…permanently (unless I become financially stable enough to lol)

As for GP I’m already thinking of changing.

I’m 28 dealing with ASD and I’m not able to work atm or/and continue on my studies….and enjoy life as a result and have been “bed bound” for most of my 20s. If not all tbh.

[MooMoo01]

Hi there, please consider joining the group ‘ Nancys nook ‘ on Facebook. It’s a group run by a nurse in America who had endometriosis and supports research. She has compiled many documents so you are informed as a patient as well as the’ nook list ‘ which compromise of all surgeons in your country who are certified endometriosis specialists. Some exclusively private and some private but also nhs accessible. You have the nhs right to choose so should you be able to wait the nhs times you could access a specialist through this route. I have received excellent care and am due to have my next surgery soon. You can feel certain that if you make the decision of treatment you have the best outcome possible with a specialist. Endo is so tricky and things can be easily missed so it’s really important. Also the pain and other issues we suffer with this condition are vast so this needs to be well understood when making decisions about medication etc . If you are bedbound it sounds like your pain is not being managed and so receiving a diagnosis would open doors for you to have better pain relief and management and treatment.

Something I did find helpful within the nhs was a referral to the pain clinic . I requested the 1:1 service they were very knowledgeable and put me on route to an nhs endo consultant so I have now been put on the waiting list for a endo specific nutritionalist and physio. A long wait but it’s something positive. I have got a diagnosis though.

I hope this is helpful for you and wish you lots of luck on your journey. There’s so little out there in terms of a clear pathway it can really feel like there’s no direction. Keep pushing and advocate for yourself and the amount of pain you’re in.

The private route really helped me, but yours will be based on your own situation. Wishing you all the best.

[allyshajohnson in reply to MooMoo01]

Hi,

Thanks for your comment. I really appreciate it. I’m not on Facebook. And I’ve heard that there are some inaccuracies regarding that FB group….Is there any other way to get access or get such support? And what is NHS right to choose as I heard that’s only for mental health and those who deal with ADHD that have access to those services. Btw I’m based in the UK. London in particular. Thanks.

[MooMoo01 in reply to allyshajohnson]

I’m afraid I have no idea in terms of other ways to access that group or whether there is other support. From what I’ve found it’s limited. I used it predominantly to find a endo specialist and it was helpful for that. If you Google ‘ legal right to choose nhs ‘ it will bring up the info for you.

Best of luck with your search

[allyshajohnson in reply to MooMoo01]

Yes that’s the one where I was told where that service is only available to those who deal with ADHD whether it’s mental health or and physical health. Anyways I know it’s difficult but if so happen to find anything else don’t hesitate to let me know. Thanks.

[parleystopaz0e in reply to allyshajohnson]

Hi, I never actually joined Nancy’s Nook even though I have a FB account, not sure why. But where I searched for specialists is via the BSGE accredited centres list here bsge.org.uk/centre/category...

It contains a list of specialist endo clinics and you can see in each entry they don’t just have gynaecology surgeons but also other types of surgeons on their team. They have a pain management team too. Don’t know if they provide nutritional assistance though but it might be good to consult some of these centres regarding your case. Plus if they do say you can have a laparoscopy, or help you get to the point where you can have it, these are the people you want it done by because they perform excision of endo, not ablation (though probably still best to confirm which one they do).

I was treated privately and was never referred back to the NHS so I’d say not all private consultants do that. And the whole thing was way quicker than if I’d stayed on the NHS waiting list. If you can afford to go private I’d recommend it. I can’t comment on which route provides better quality of care but for me personally it worked out quite well. Others may have had a different experience going private. Good luck though, hope you get the help you need!

[allyshajohnson in reply to parleystopaz0e]

Hi, yes I’ve been on BSGE…that’s how I found out the hospital I went to wasn’t accredited after all. :/ I was just wondering if you know of any other ways to find such places/endo specialist, but if not I understand. Thanks.

[parleystopaz0e in reply to allyshajohnson]

Ah, I see. No, sorry I don’t know of any others. But there should be several accredited centres in London. We’re unfortunately not allowed to make recommendations for specific clinics here but my consultant is based there