Hi, long post incoming but I would really appreciate your thoughts!
I'm a 24 year old student, diagnosed with endo via a lap in November 2017. The lap was carried out in a standard NHS hospital using ablation. I found that my symptoms (painful sex, pain after sex, bloating, abdominal pain etc.) did not improve after the lap, and have in fact got worse since then.
A couple of days ago I went for a 6 month review at my specialist endo centre. The doctor there suggested that I might benefit from another lap, but within the specialist centre and using excision.
Before taking this next step, the doctor wanted me to see a specialist they have in the clinic, who does transvaginal scans and is able to see endo on them (unusual I know, but I've researched this guy and his work seems to be cutting edge and legit).
Now the dilemma - I'm leaving the country at the end of February, and not returning until mid-May. The only appointment available with him is 2nd March, which is two days after I fly. They don't have any earlier appointments, and they don't book more than a month in advance, so I can't book one for when I get back. He only seems to do clinics at this hospital every few months, and only for 6 women at a time, so getting one is looking quite challenging.
Adding to this complexity is the fact that I'm a graduate student, and I start my new job in August 2020. It's a very high-flying position in the City, and I'm still deciding whether to disclose my endo or not, but I wanted to get the surgery done before then if possible, which the doctor I saw the other day certainly seemed to think was possible. However, I'm worried that not seeing this specialist until May/June earliest will put a brake on the possibility of having a lap until I start work.
The way I see it, I have three options:
- Move my flights (potentially expensive + not really fair to my travelling companion)
- See him privately (£290, which would hurt but I'm in the fortunate position of being able to pay that)
- Wait until I get back and hope I can get an appointment.
What would you guys do? Does anyone have any thoughts?
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SarahMia227
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My endo affects me starting work too (I graduated last year). I've gone private for my endo care purely because it's faster moving and I hope I'll be able to start work soon as I have an interview in the pipeline.
I think it's a good idea to mention your endometriosis to an employer as they may be able to give you support and help other employees with the same condition too. But of course if it is not something you feel comfortable discussing then you don't have to mention it.
Usually I'm completely opposed to going private … but on this occasion:
'Go Private'.
Sadly, it was the only way that I - finally! - got my own endo sorted … although my issues was quite different. (NB in my case I was also subsequently able to have the treatment on the NHS).
I've sent them a follow up email this morning to ask about how it works then going back to the NHS, as I obviously can't afford to pay for the lap myself! If you don't mind my asking, how did your private/NHS meld work?
It's times like this that I'm so grateful we don't live somewhere like the US. The NHS isn't perfect, but I can't imagine having no care at all.
A rich friend of mine with 'work insurance' had recently had some complex gynae work done by a particular Devon Gynaecologist. She recommended him.
I think I either wrote, or phoned his secretary, and I then had a couple of consultations - in-between he had asked for tests at my GPs (so no cost to me, there). So, at the second meeting he concluded/suggested from my results and my GPs detailed history, that the best route for me (I was in my early 50s and probably close-ish to the menopause, so hopefully my problems were not going to continue - at full tilt - for much longer) was to have a mirena coil fitted: but under anaesthetic as I had never had children and my cervix was very narrow.
He arranged everything, under the NHS, via his close NHs colleague, who did the op (the private gynae was near retirement, and had given up all his NHS work). Then I saw him once more, after a month or two and my pains were already subsiding.
Obviously I was queue-jumping - but I had given up, completely, trying to get anywhere with the NHS at that time. I think my 3 appointments cost me about £180, but it was quite a while ago, so I guess it would be much more now.
If you can see this guy privately, and that is just for a transvaginal scan, and for a discussion so he can then refer you to a BSGE Clinic, then I think it may be worth it.
However, I don't quite understand why you cannot just be referred to a BSGE clinic, under the NHS, by your GP …. if it is already obvious that your Endo is sufficiently bad to warrant such intervention. GPs have a specific protocol that they are supposed to follow, for referring women with bad Endo, to BSGE Clinics - on the NHS - and it sounds like you should qualify for this. Plus, I got an NHS transvaginal scan - v quickly - a few years ago, when I was having (what turned out to be) colon problems - but they wanted to rule out anything on the ovaries.
Don't know what more to suggest, but I do hope this helps. Take care.
I'm already referred to a BSGE clinic in London luckily. My issue (although it is a very privileged position to be in!) is that I'll be away for 2.5 months, so I can't find a date to do the scan before I leave, and they're not booking any for when I get back.
I'm thinking I'm going to go private with the scan though, and then go back to the NHS for any follow up.
Basically go put your health first love it’s more important you have to think of the extreme circumstances when it comes to endo like what if it got worse it’s only been a few months for my endo to worsen and that’s all it takes
Just in case anyone is interested - I've just seen the doctor privately. We had a very thorough discussion about my health, and then he did a transvaginal scan and an over the tummy ultrasound as well. He found deep endo in my pouch of douglas, and said that when he sees that on scans, there's usually more endo superficially elsewhere as well (that's just too small to pick up on the scan).
He recommended trying cerzette on top of the coil for a few months, and possibly excision surgery after that.
I'm really glad I went to see him - yes it was a lot of money (for me at the moment, any way!), but he did a really thorough exam, talked me through everything he found, and gave me some good advice and next steps going forward.
Thank you all for your opinions and advice - it's always so nice to know I have people to turn to who really understand endo xx
So I'm going to try the mini pill on top of the mirena coil (which I already have in) to start and see how that works for a few months. I'm going away for that time anyway, so that gives me 3 months or so to try it. Then I'll be going back to the NHS for any operation - but he recommended it in a letter he's sent to my endo clinic, and I have a copy of it as well. I'll be seeing the consultant in the clinic in June, so I'll talk through any potential surgery then.
I'm quite keen to have it, but he did say that for some women with neuropathic pain (my endo seems to have triggered superficial vulvodynia and dysperenuina, as well as deep sexual pain), surgery can make it worse, so that's something for me to think about while I'm away.
I’ve been told surgery can go one of both ways better or worse you just don’t know.i got quoted 6.600 just wondering what quote you had I’m going back to nhs as can’t afford that
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