Hi, Today, I called my GP and directly asked for a referral to a private endometriosis centre (I have stage IV endo, diagnosed by laparoscopy). To my surprise, she didn't argue with me. I actually have an appointment to speak to someone who knows about this topic in just one week! My goodness! I've been waiting since my lap to speak to someone who understands endo, and have been told I'll have an MRI... 4 months after my date of diagnosis - that's it. And the rest of the time, GPs have answered some questions, but they always sound "put upon" when I ask for help with information or pain. If I had understood how quick it would be privately, I would have asked months ago! Grr. Hopefully this will help. That's my rant. Private is fast compared to NHS.
Going private - open doors faster? - Endometriosis UK
Going private - open doors faster?
Hiya, glad you got your rant out 
not wanting to put your hopes down but please remember that the majority of these private doctors do work for NHS as well. From my personal experience the only difference between NHS and private is that you get a bit more time to talk to them and they are more "willing" to listen because of the private fee. That is a good start on itself compared to nhs 10 min standard with the GP. Make sure you go armed with observations and notes so you get as much as you can worth of your money and more importantly for your time.because managing endo and its lifecycle is a full time job that does not only pay you but takes your soul away. Because they have the title specialist it does not mean they know your body so you take that in the consideration as well. Good luck!
Yay! So glad you're getting seen to and someone is listening to you.
I found private so much quicker and they actually listened to me! You'll find it so much calmer and quicker. Expect them to want to do a lap as soon as possible including endo excision and biopsies! My specialist could do it in as soon as 2 weeks but I thought I'll give myself a little bit longer to mention to work, read up and generally get mentally prepared. I like that everything is booked around when you need / want things even down to booking appointments as and when they suit you so no waiting lists. Your specialist will be the same throughout your treatment / ops and any aftercare - yes there's aftercare appointments!
I posted my story which includes private appointments; it may give you an idea of what to expect:
healthunlocked.com/endometr...
Thanks Luthien, I read your story. Thanks for sharing your thoughts experience! 🌼💚🌼
I guess my homework is to try to understand what the health insurance package I have with work would cover. I know they will cover the first consultant appointment (after the excess fee), but I'm not sure about anything else yet.
I'm feeling encouraged, hopeful and a bit intimidated all at once.
I hope the NHS shares data records like the results from my diagnostic lap, with private consultants. I don't want to do a second lap just for them to get a second look at the same thing. 😮
Yeah that's what I was worried about - what work health insurance would cover. So I gave them a call; mentioned my appointment, they said it's with a specialist they're happy with and at a hospital they're happy with so that was all covered. You should have a login / portal for your health insurance with your policy details and cover levels, if not contact your work HR to find out whom your cover is with and then contact that insurer directly.
Most insurance companies cover diagnostic services .ie. scans, blood tests and operations as standard. Once you've had your first appointment and know what you want to do next, call up your insurance and let them know you'll need xx at xx hospital but haven't sorted it yet, they may provisionally agree it. Once you've chosen a date with your specialist secretary she'll give you some operation codes; these you'll need to give to your insurance company to have your procedure (s) approved. They'll go through all the blurb so don't worry
Remember even when it's all approved and you have a date you can still question it, have the procedure explained, add things / remove things, postpone it etc. For example with my latest one I had three codes;
Laparoscopy with excision of endo (everyone in abdomen)
Hysteroscopy (camera in vagina to uterus)
Biopsies of abdominal area
The NHS should share your records with the private specialist but usually because the private specialist is often the best in his field he may want to do his own diagnostic lap / scans / camera photos as he'll know based on your symptoms where he'd like to look. If you were seen on the NHS by a general gynae then your private specialist may ignore their lap findings as general gynae will only look around the ovaries, tubes and uterus, the private specialist will want to look and check everywhere in your abdomen including bowel and bladder. Also they are more thorough so expect a lap to be mentioned again, but they'll go in and excise endo, do biopsies etc right away not wait for a few months to have you back in. I was surprised at that! They want you back to being fit and healthy right away. They aren't tied up by the NHS diagnose and back on the wait list sort of thing.
Your insurance (either paid yourself or through your work) will not cover an operation with a specialist without the diagnostic part - i.e. that insured specialist need to suspect and see endo, or anything else suspicious for you to be approved and covered by your insurance for the operation. I know really odd but think having a quote at one place to get a car fixed and then going to a different place, just rocking up there to have it fixed exactly as the quote paper says; they'll want to check it again not just order parts and literally fix it blind!
Hope that's a little clearer.
Happy to answer any questions x
Hi Luthien, Yes that does make sense.
The gynae who did my lap did expect to find endometriosis because my consent form was for a diagnostic lap and treatment of endometriosis - I already knew I had endometriosis back from when I had a lap for suspected appendicitis, but turned out to be a ruptured endometrioma. The gynae did take many pictures and filled them, and she even noted the endo in many locations (far more that I would have expected from a general gynae). I really hope those records are worth something because it took me 4 weeks to heal after the lap.
I do feel deeply irritated with the NHS for not helping me when the initial problem was found - endo. They just sent me home after the emergency lap, organised an ultrasound for a couple of months later, and no one looked at the results. I was just left asking my GP if I had endo or not, and he didn't know... So he put me on a waiting list for a few months to speak to a general gynaecologist. The list goes on, and on. But, in their favour, I do have an MRI scan in a few months, and the multi-duscipline team would look at that. But I don't know how they would stretch the waiting times for everything.
Maybe privately, they'd have a chance to follow a line of thought. Sorry, this has all come out as a rant again. I think I'm starting to get worn out from all of this.
Ah I get what you mean; do you know if those investigations were sent to your GP? If so then they should be forwarded to your private specialist. If not then you'll need the details of the NHS specialist you saw, and request they forward those investigation results to your private specialist. Sometimes the private specialist may be able to push a request for them if you have the contact details, you could see if you can get that sorted before your appointment, that could help.
If you have any letters / results available you can also take them along to your appointment, that will help your private specialist a lot. You may be able to get details from your GP perhaps start there; sometimes they can print off things they receive.
Privately I have found it so much better; there's no waiting. You'll find out how thorough they are, you'll get up to an hour booked for your initial appointment so write down your worries and concerns, it could help to mention how you're feeling up until now with what you've been through including feeling lost. You should come out of your appointment feeling like you're getting somewhere and they will do what they can to start to get you back to normal.
With my most recent operation: I felt like some symptoms were coming back and I went for my initial consultation at the end of November last year to see what could be done, I thought he'd say leave it for a few more months or say a year or so, nope, he could do the lap to look at my endo and excise it as soon as mid December so just 3 weeks later. As it was coming up to Christmas and the New Year I thought I'd leave it until after, and booked it in for mid January. I've had two nurses appointments to check my stitches at 7 days and 12 days, then my follow up with my specialist at the beginning of Feb, I'll have my 4 monthly follow up booked in by the specialists secretary.
Oh simple things which really help going private, stuff like;
After any appointment / operation / scan etc. you'll have a letter sent to your GP outlining what's happening next, this will also be copied and posted to yourself.
You can call the specialists secretary or email to run though any worries / concerns / book things in.
You'll have your own room with en-suite and tv, somewhere to store your belongings.
You'll see your specialist a few hours after your operation as they do their rounds to check their patients, you'll have your sick note signed with prescription meds and care pack (notes on what to do, spare plasters), and any post op appointments booked in including nurse ones and a two week one with your specialist.
A discharge letter will be sent to your GP and one copied to you posted in a few days
So it feels really thorough, which means you can just get on with your life in-between rather than stressing and chasing stuff up.
It's not a rant, it's fine, you can say how you feel, it's okay, we're here to help.
I find sometimes my posts are just too long! hah!
Wow, Luthien, thank you for telling me more about what it was like for you. It really helps to have another perspective! Thank you about telling me how the follow up went. That sounds amazing 🌿🌼🌿
I did my "homework" and read my health insurance policy tonight, and it looks like it should be ok.
I also found out the private consultant I will see next week works not only in the private endometriosis clinic, but the NHS one as well. My husband - who knows more about the data system in the NHS explained to me that because the consultant works in both systems, he should be able to access all of my records, even if the notes from the lap weren't sent as a copy to the GP.
So, I'm trying not to hope too much, but I am really, really hoping that he'll be able to take charge of my file and help make a path to sort this out. It's been wildly helter-skelter trying to sort things out between GPs, gynaecologists, and A&E. Meaning nothing is really sorted out at all.
I'm keeping my fingers crossed!
The strange thing about all of this is the worries circling about the guilt of considering asking a different person for help, what work will think, etc. It's hard to remember that my mind is fabricating things to worry about just because I'm sore. I kind of wish I were an android so I wouldn't have these strange emotions, and hey, if I were an android, I wouldn't have endometriosis either! 😂
So, only 7 more sleeps before I get to see a consultant!
What an interesting thread guys!Viola, although the consultant is likely to be thorough, I’d still make sure to have all necessary documents for your appointment, if possible.
I had a private consultation (for a different issue) where he told me he didn’t have access to a particular set of results, even though they’re on my online account.
And as for work, I found the best defence is to be as open with them as possible. At the very least, keep HR informed with what’s going on. Luckily I get on with my male manager. Bless him he always gets an earful 🤣 but one of his predecessors didn’t plan for my absence even though she knew about my condition and upcoming operation. Luckily HR were involved and they shut her up pretty quickly when it became clear I had a potential case for constructive dismissal. I hope it won’t come to that for you!
Hi Moonglo,Yes, certainly it's a good idea to take a record of the relevant documents to see the consultant. I completely agree. I've printed a copy to take with me
What worries me is that I don't yet have a copy of my diagnostic laparoscopy notes. I have the discharge paper that says I have stage IV endometriosis, images I took using my mobile of the pictures from during the lap showing the endometriosis... But I don't have a copy of the anatomy diagram marking where endo was seen, or a written description to go with the images. I've requested a full copy of the notes from my diagnostic lap from the legal department at the hospital where it was done (request for patient records), and I'm still waiting for a response. I'm worried that the gynaecologist who did the procedure may not have written down a detailed description. My hope was that if the hospital doesn't give me this information before my appointment next week, the consultant might be able to help me get a copy because he has access to NHS records. I'm really trying to cover all the bases, and worried about whether the full info is really there or not. 😔
It sounds like you’re being super thorough and you’ve done as much as you can to help this situation- a 90:10 ratio, perhaps?
And I hope you’re a little reassured that the consultant can get what they need if you don’t have everything on the day - it sounds like that 10% of information is something out of your control and not worth worrying about, until you’ve talked to the consultant.
I know that’s easy to say and hard to do as I’m also a control freak! 🤪
Thanks Moonglo. I think you're super organised - I like it! 🙂
I went via the NHS for my bloods and ultrasound, but where I live the referral was going to take longer than the 2 week turnaround. My doctor then suggested then I try privately as we had the option, I was then seen within a week, MRI done and had my lap 3 weeks ago for stage 4 endo that I had no idea I had. My surgeon is the still the same guy I would have seen, can definitely recommend privately but the NHS were amazing up to the point of handover. I have my GP to be be thankful to for pushing my tests.
Stage 4 is very high you might have to have a full hysterectomy with both ovaries removed.
Hi Bluesea, Anything is possible. However, stage IV can cover degrees of the issues all under one label - some can be deeper and more wide-spread than others - also called stage IV.
For now, I'm going with the optimistic guess that I have a "light" stage IV where there are the elements present to categorise it that way, but it's hopefully not so far advanced yet that it's at the extreme side of the spectrum out of what is possible. I saw my lap images and compared them with normal anatomy images, as well as advanced cases of endo stage IV. Mine looks "unhappy" but not as extreme or advanced as some cases.
I'll see what happens on this strange journey of discovery as I go! 🌿🌼🌿
Yes let's hope it has not traveled to far, mine was stuck to my bowels and bladder as well that's why I had to have full hysterectomy ect and ovaries removed, when you have that done you go into menopause, no more smear tests . Takecare.
Hi Bluesea,I understand now - gosh, you've been through a lot. I really appreciate that you've told me part of your story. Hearing what you've gone through, I better understand what you were telling me. It sounds like endo really can be extensive. I'll keep in mind that's one of the possible outcomes.
How are you doing now? Are you managing ok, and did the operation help to make you more comfortable?
I did have it 2 years ago, I dont have pain anymore, but with menopause the hot flushes ect , I did not go on HRT, I have gained weight ,a little emotional for me as I always wanted children but it never happened for me, it effects everyone different , I coped well with the outcome, my partner was more in shock than I was, he took time of work to help me . My gynecology did my sergery and a few others I was last in as they were unsure how long it would take. I was well looked after .
You are entitled to have an appointment with a private specialist/specialist centre and I would think most GPs would agree to do a referral if that's what you want. But the surgery will be very expensive (maybe 10K involving stage 4) which most people can't afford unfortunately.
Hi Lindle, Thanks for the info. I'm planning to ask the private consultant for advice, with a hope to speed up my MRI scan, and to see what's possible through the BUPA insurance plan I have through my work place group plan. In the end, I may end up doing some things privately to help move things along (where covered), and might very well end up doing other things through the NHS, however they best fit together.
That's the practical side.
On the emotional side, I'm standing on the edge of going raving mad and losing my mind with this endo topic. I would have said before that I was a patient person. Not now.
I saw a comedy skit years ago about a villan who would "thwap" his opponent with a spoon. Ha! That's nothing. But after a while, after said spoon "thwaps" every minute of every day and night, that "small inconvenience" becomes mind-bending. And throw in some pain & screaming episodes for good measure.
The point I'm trying to get to is that this endo path is a long road to walk, and if there's some way to even take one little short-cut, I'll give it a look-see & investigate.
🌿🌼🌿
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