Private : Hi guys, so I was reluctantly... - Endometriosis UK

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Chloelouise92
Chloelouise92

Hi guys, so I was reluctantly told in October I could have the lap, ‘if that’s what you want’ accompanied with an eye roll! So I was told 3 month wait...after 4 months of hearing nothing I phoned hospital to only be told I was looking at another 8 months!! So a year from when I was told I could have the lap to potentially having it!! Anyway I’ve decided enough is enough and I’ve booked a private consultation with spire health care. I have the appointment tomorrow! Does anybody have any advice on going private? Thank you x

47 Replies
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That’s what I did in December, best decision I’d made all year to get answers, same company. Had op early February. All went well as far as medical side.

What did you want to know?

PM if you’d prefer.

That’s brilliant thanks for the advice and glad you got sorted so quickly! I’m really nervous that I will have the lap and they won’t find anything but i can’t wait another 8 months! I’m in daily pain and can’t walk properly, I can just about manage a day at work, by the time I get home I lay in bed all evening unable to have the energy for anything else!

I’ve found any gps and consultants I’ve come across so far to be completely unsympathetic and almost made me feel like maybe there is nothing wrong with me and it’s just normal to feel like this! Did you find going private they were more thorough?

I’m terrified of having the lap and finding nothing, as much as I obviously don’t want to have Endo I’m almost willing them to find it so i know I’m not going crazy!

Went through same with GP’s, lost count of how many times I went with frequency and pain, never considered gyne stuff until renal scan showed fibroids.

NHS referral went to Urogynaecology and enough was enough. I wanted to know about the fibroids, not go through more time wasting.

Before I went to see the consultant, not referred by GP, I made notes of symptoms, what had been happening. Periods have always been a pain, included everything and gave it to him to read. My communication with doctors had become pretty poor so for me easier and wouldn’t miss anything. He did a very brief exam, asked a few questions and then said he thought endometriosis, and would need lap to confirm, if there would treat at the same time with Helica. It’s was a bit of a shock. He thought the fibroids on the scan too small to be of concern. I had the option of going on his NHS list or private.

I ended up selling a few bits to go private. In my mind it meant I’d know who was doing the op and right experience to know if anything else was wrong.

It was there and treated. Unfortunately for me he found other fibroids hidden from the scan, due to large uterus. So although too early to tell, could still be an issue.

Unfortunately the only way to tell is a lap, it’s going in knowing this and being prepared. I told myself that if someone is going to see something an experienced eye is going to be so much better than any machine.

Take someone with you if it will help. I went on my own.

I can’t really answer the thorough bit as I’d never had an op before. I’d seen a consultant at NHS ENT, well registrar, that also was partly my decision in going private, knowing your dealing with the right person. Have you researched the consultant, it was useful for me.

Well I went to an open meeting on Saturday just gone where he spoke about Endo. He is an Endo specialist. I felt like he knew what he was talking about and got a nice impression of him so feel happy to see this particular consultant! Just guess I have to see what happens tomorrow! I get the impression that going private is a better experience! X

Even better 😊

Let us know how it goes

I went private so I could see this one specific surgeon as he’s a renowned Endo specialist and when I was there explained my financial situation and said I only paid for the consultation as I desperately wanted him and he ended up doing all the tests, MRI and laparoscopy that I had done Friday with him all through theNHS and I have a follow up on Tuesday 10th of March with him once again through NHS, definitely worth asking if they will as you will be looking at THOUSANDS for surgery and after care private xx

Oh wow that’s brilliant! I mean I’ll be honest I am worried about the money however it’s the Waiting time of the nhs that made me make my decision to go private in the end. The thought of waiting another 8 months is just horrendous...hope you don’t think I’m being rude! How long after the private consultation did you get seen for the mri lap etc?

Thanks for your reply! X

That’s the thing it’s just so expensive going private but sometimes the only way, plus I’m 22 on an apprenticeship wage so even buying prescriptions is a pain in the bum for me! 🤦🏼‍♀️ I was referred to the same specialist through my GP and after 3 1/2 months waiting for a simple letter to tell me when my appointment was I was in unbearable pain one day and couldn’t even move from bed so my dad called the gentleman directly and arranged the private consultation for the 28th of November by the 13th of December I had my blood test arranged through the NHS and the MRI was booked for the 17th of December, by the 3rd of Jan I had my letter telling me my laparoscopy, hysteroscopy and cystoscopy was booked for the 28th of feb, honestly it was the best thing we did and only ended up paying £228 for the initial consultation and everything else including the follow up he has kept through the NHS, honestly it was incredible and he was very thorough, I don’t know where abhors you are in the country but if you are anywhere near Surrey I could give you a list of names who have been incredible for me with speeding everything up and also a list of names to avoid like the plague! Xx

Waiting times are just so much quicker aren’t they going private seems to make a massive difference! I’m in Portsmouth but the consultant I’m seeing is an Endo specialist, he did an open talk about Endo very recently and I really liked him. Hopefully I’ll get somewhere today! X

My insurance wouldn’t cover any hormone treatment, which I’m waiting to have now and also had to have prior to last op.

I explained that I wouldn’t be able to afford the injections myself and he booked me in with his nhs clinic immediately. Saved me thousands of pounds!

Everything else privately but only because I had the insurance with work so only had to pay 15% upto max £350.

I believe that even if it is just having that initial consultation privately it speeds things up especially if consultant works within Nhs too (most of them do).

Good luck today xxx

It honestly does make such a difference, which is a shame really that the only way we can get quicker treatment is by having to pay through the roof, bring on the time Endo is a more recognised condition and the NHS actually have the staff and funding to be able to actually move everything along quicker and we don’t have to suffer as long! Oh good I really hope everything goes your way today, keep us posted! Xx

It went so well! He was lovely and made me feel so comfortable! So going to have a lap done privately, will probs have the mri done through nhs as the wait time isn’t as bad for an mri...got to try and save some pennies somewhere as it’s not cheap! Got phone call a while ago to say 28th April for the lap! X

Oh my god that’s amazing I’m sooo happy for you!! 😁🥰 glad you feel a lot more reassured! Maybe have a google and see if there’s any funding or anyway you could get help as it’s a genuine medical condition and something you can’t wait forever for to have on the NHS, can’t guarantee there is anything but it’s worth a try! Honestly over the moon for you!☺️💛

They might even do a payment plan or something if you speak to his secretary? Xx

It says on the website they do payment plans I really hope so! I’m very fortunate that my parents are so helpful and have said that it I can’t do a payment plan they will sort it because they just want me to be better! Xx

That’s amazing! Mine are the same, my mum is a little harder, she tends to never believe an illness and will tell you your fine until your diagnosed, no matter the symptoms but my dad on the other hand is an angel and will do whatever to get me feeling better ASAP. I came back from the doctors earlier after my mum telling me I was okay (after vomiting, shaking, sweating and in severe pain) turns out I have an infection and the joy I got from “I told you so” was crazy lol I’m sooo glad it’s all moving forward for you it’s amazing 😁xx

Thank you I feel so relieved! As weird as it sounds I just hope they find something so I have some answers! 🤞🏻🤞🏻This forum has been amazing with support and advice 💛

I was exactly the same, I was so glad when they found what they did because I finally knew it wasn’t all in my head! It’ll all go your way I assure you! Xx

Honestly I’ve found so much love, comfort and support from this forum! We all understand each other and even just having 1 person who understands can make such a big difference, let alone a whole group of women💛

It sounds mad to say I hope I have this awful condition but I just need to know it’s not all in my head! Thank you so much for your advice and support 🥰 much appreciated! Sometimes people don’t understand unless they’re going through it as well!! Xx

I fully understand ☺️ don’t thank me, here anytime for a good chat, rant, cry and advice (not medically trained but can help and compare to my own experiences) and exactly! All the best 🥰💛

Xx

Yes! I have no faith what so ever in nhs they took 13 years to listen to me by which time my pelvis was obliterated by stage 4 deep endo and infertile with no children as a result.

I went privately using policy with work and it was the best thing I ever did. They are thorough, listen to you, care and refer you privately to the most appropriate consultant. You won’t believe what a different experience it is.

Good luck xxx

This makes me feel more confident. Awful though really isn’t it that they let it get that far with you. It’s never right that under the nhs who we should be able to trust the treatment isn’t always good enough. I hope you are better now.

Thank you so much xx

Yeah it’s totally wrong and very, very unfair.

Was literally just saying to my mum that they are raising so much hype & awareness of this coronovirus which is nothing more than minor flu symptoms and don’t do anything about people in unbearable pain with low quality of life with endo.

Unfortunately I’m signed off work long term at the moment, my consultant thinks I’ve got permanent nerve and scar tissue damage (as a result of the late diagnosis and treatment).

Just awaiting to start some injections and different medication.

Such a nightmare but honestly I promise you have definitely done the right thing by going privately. It’s just a shame that seems to be the only route for us at the moment xxx

It’s just madness isn’t it for a condition that is so common it’s not really very well known or taken seriously! That’s awful, I hope the new medication and injections help you.

Yeah I think it gets to a point where unfortunately you’re pushed into going private, which is a shame because it shouldn’t be like that but what option do you have! Xx

That sounds familiar!!

I have my private appt on Monday and literally can’t wait find someone to just listen and understand. The GP is pointless, 8 years here of undiagnosed.

Are you able to name who you are seeing? And let us know how you get on?

Xx

Of course! So I’m seeing Mr Christopher guyer...I’ll let you know later how I get on! Xx

He's really nice. I went privately with him through the Spire in 2018. He did offer to refer me for my lap on the NHS but I'm no longer a uk resident so I wasn't entitled. Hope everything goes well :)

He was absolutely lovely! So he suggested having an mri aswell as a lap...just waiting for his secretary to contact me in terms or dates! Felt so much more positive coming out of that then I have the entire time I’ve been seeing gps and consultants. Felt like he listened, understood and empathised as well as actually being interested in helping me! X

Arhh that's so good to hear! being listened too really helps.. feeling dafe and being understood is something we all need, it's such a shame we have to pay for it..

Yes I felt really listened to as well. I remember leaving the appointment so happy even though he'd said 'i think we need to consider that you have endometriosis' because finally someone listened and cared and after 18 years I might have a proper diagnosis at last. I'm sure you'll be in good hands and the staff at the Spire were all really kind :)

It’s crazy! Can see why so many people are pushed into private healthcare. I saw Christopher Guyer. By far the nicest person I’ve seen throughout my hospital/gp visits! He has suggested an mri and said definitely need to have the lap done...am now just waiting in terms of dates available! Best decision I made to go private just wish I’d gone sooner! Would defo recommend him he was lovely and really understanding x

That’s great the appointment went so well. It really does make a difference, shouldn’t do.

Are you having treatment privately or NHS?

Will he treat if it’s there at the same time?

So mri I will go through nhs hopefully it won’t be too long! Then the lap I’m having privately because I was told 8 months at least with nhs! Yes so he said they will treat it there and then if it is found! X

That’s great, you must be so relieved 😀

I went private in the end after lap done on nhs years ago and was told I just had heavy periods, made me feel like I was going mad so I went private and best thing I did as he found endo and removed it and also found I have adeno, had suregery within two weeks from first appointment xx

Chloelouise92
Chloelouise92
in reply to Lou93

That also scared me as so many people had said that on the nhs they had a lap and it was missed!! I’m hoping that going private will be the best thing I can do x

Lou93
Lou93
in reply to Chloelouise92

Yeh I’ve read that too and the best thing I did xx

NH88
NH88
in reply to Lou93

I recognise that one. And the smae was done for my older sister.

I u dersrand GPs can't possibly know everything. And as endo symptoms are so similar to otyer co ditions it can take a long time to discover. But I would have hoped that if they were u sure then they would ask for another professions help.

Even with a family history I was not taken seriously.

Hi dear!

The waiting times it’s just disgusting! I think all of us have been in your boat! I not only went private I moved abroad

, I am living in Germany for that very purpose and things are amazingly different (in terms of health care) within two months of my first consultation I have gone under ivf treatment (you can see the difference there 😉) when I called to make an appointment to see a gynaecologist btw I chose the gynae I wanted to see you just google it and find one near where you live call up and you get an appointment as soon as one is available... within a week after my first call I was seeing the gynaecologist! She did a complete examination even an ultrasound!!!! So I don’t know what the private system in England is like but I have heard negative stories too reason why I decided to move abroad until I find a real solution to my problem. when I saw the doctor in the reproductive clinic (who also done another ultrasound for me) found large cysts in my ovaries he sent me some contraceptive pill called Maxin and in a month the cysts were gone! How on earth did that happen?! 🤷🏻‍♀️ I was never sent any treatment plan back in London because after the second operation when they found endometrial issue stuck all over my reproductive system!! They suggested that I should get pregnant because endo affects fertility!!! After my second op!!!! Argh 😤 I am ranting here again (sorry) just very frustrating to see how women with endo are treated under the NHS system I find it appalling!!!! This is a very serious illness and should be treated as cancer! I read an article in Australia about it “endo should be treated as cancer” comparing to other countries I think uk is lacking care for endometriosis (my opinion and my experience).

Now that I have ranted and told you my story I really really hope and wish you get your lap sorted very soon, the only way to rule out endo it’s by having one and also they can tell you exactly what’s going on inside your reproductive system.

Best of luck 💛💛💛💛

It amazes me hearing people’s stories and how they have been treated! I had a consultant literally roll her eyes at me. One gp has said that I’ve not got it no way because my ultrasound was clear! It’s just crazy. I’m under no illusion that it may not be Endo! However I need to know either way what it is because I can’t live like this any longer!! I’m just really hoping I get some answers 🤞🏻 Sounds like I’m doing the right thing by going private! X

I know how it is.... I was there for 7 years telling the doctors something is wrong with me!!! I had to come and tell the doctor who by the way was female no sympathy whatsoever... I told her I have investigated my symptoms online and I believe I have endometriosis! I had to tell her that ...

Yes your ultrasound was clear that doesn’t rule out endo, fibroids or adenomyosis, that only can be diagnosed by a laparoscopy.

I hope going private is your answer and you can get diagnosed as soon as possible.

💛💛💛

It doesn’t show on ultrasounds I can’t believe how my gps earn and tell such rubbish advice! Be a different story if it was their body and pain! Makes me so angry reading everyone else’s awful experiences. Xx

PaoPetite
PaoPetite
in reply to Lily1986

Yeah my blood boils every time I read stories here, very similar to mine and I just feel for every woman in this forum. I was let down by the doctors, and I do blame them for my infertility because of the waiting times just to see a consultant it’s ridiculous by the time they see you the condition it’s larger and more difficult to be treated.

All the best to everyone 💛💛💛

Lily1986
Lily1986
in reply to PaoPetite

Same, I believe if they’d listened and not made out I was imagining things from when I was a teenager and the endless hospital and doctor visits after that it could have been managed and saved my fertility.

Now I can’t even work right now and so angry and sad at what my life has become.

I’m so sorry so many others have had and still are experiencIng this although it does help to know I’m not the only one. Xxx

PaoPetite
PaoPetite
in reply to Lily1986

Definitely it helps a lot! This forum has been my only way out for my sanity. At some point I thought I was going crazy, I lost my job 3/4 years ago I loved it there but I couldn’t stay longer due to my absences. after my last operation which was February 2018 I felt a little bit better, found another job not the same as my dream job but it was good enough, when I found out I had to pay for my itv treatment because the NHS doesn’t help women that have had children I decide to move to Germany (just to get treated) I am just shocked to see the massive difference in terms of health care. I feel I matter here, the doctors are amazing, i have been seen by every other doctor that specialises in endometriosis and every time I see the doctor they always do an ultrasound!! That never happened back in the uk... sad to say I love London is my home but when it comes to health care I rather be abroad.

If you don't have to have a lap, don't do it. Mine caused an infection, a hernia and bladder issues. Oh and I started throwing up blood from a Malory Weis tear from the breathing tube. There is a risk with any surgery and sometimes no action is the best course of action.

Wish I had never had the lap

So sorry to hear the complications you have to deal with

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