Help me get the most out of my private appointment!

[AcceptanceIsBliss]

Hi all,
Undiagnosed endometriosis sufferer here. Managed to wait long enough to see a hospital consultant who told me i probably do have it but it doesn't matter if I do. I could either go on the pill or have a coil. Shocking experience and, after trying his new painkillers and having yet another night of diarrhoea, extreme pain and sickness, have finally booked an appointment with a private gynae consultant at the merry cost of £200 (fuck you NHS and your shitty women's services).

So, I have no idea what to expect. Will she be more sympathetic and more likely to listen seeing as I'm paying? I've been told a laparoscopy is around £2500. NHS wouldn't even hear of referring me for that. Will a private consultant be the same? Will she tell me to suck it up, carry on with painkillers and that a coil (which my doctors surgery are obsessed with) will be the answer to my prayers?

I've prepared myself for the fact that she may well say that and it will be like burning £200 but I'm desperate. Also, if money were no object, surely surgery is the best option for an actual real diagnosis and treatment? I know there is no cure.

So, I have 40mins with her. How can I squeeze every last bit of info out? I will write down symptoms, dates and investigations I've already had on NHS.

I would actually quite like to discuss a hysterectomy but will she shut that down straight away?

Any advice would help. I'm dreading being shut down again. I'm so sick of not being taken seriously.

Following because I have the exact same questions! My appointment is next week.

I think it’s such a British thing to downplay everything so my husband keeps reminding me to be honest about how much pain I’m in every day, I’m going to be totally honest - it’s ruining my life!

Never in my life been desperate for surgery but I’m praying for it! X

I’m fortunate to have private health insurance so my treatment was never fought over. I went into my first appointment not realising my issues were endo, I’d been told that since nothing showed up on ultrasound and I’d had no issues conceiving that it was clearly one of those things. My gynae was in no doubt it was endo though and even though I was only requesting ablation he insisted on performing a laparoscopy at the same time. I had both on monday and as he expected I’m riddled with endo, my womb is stuck to my bowel. I’m waiting to see if the ablation helps at all but I suppose the next step is bio identical hormone creams and another go at releasing my womb.

Go in with an idea of what your end game is. Your gynae can refer you back into the nhs for a laparoscopy, don’t be afraid to ask for that. Ask if hormones would help, ask about ablation if the bleeding is an issue and you’re finished with children.

Good luck.

Yes I'm going to be totally honest. I literally am frightened every month now. What is more terrifying is that the tablets I'm on don't seem very reliable in terms of working. I would happily have a hysterectomy if they will let me! I imagine life without the hormones surrounding periods must be a joy. Although not sure how I feel about the menopause!

As Dmtush writes, go in with an idea of what your end game is.

Write down any question you want to ask, no matter how trivial it may seem to be or to you. If you have kept a pain and symptom diary bring this with you. Take notes.

I saw a private based gynae earlier this year and to my mind it was good money spent (was given a blood test by Gp then otherwise dismissed) . I felt both believed and listened to properly (I was bleeding constantly and I went onto have ablation surgery)and the words “Mireya coil” was not mentioned.

If endometriosis is indeed the cause then a hysterectomy may not be the answer either because it can also involve other sites like the intestines. A hysterectomy would not address this and some endo patients do experience pain post hysterectomy too.

The website endometriosis Uk is good and has useful information on it. Knowledge is power here, educate yourself as much as possible as this will stand you in good stead when it comes to potentially making treatment decisions.

Yes to taking a pain and symptom diary if you have one.
Be clear about all the ways this is affecting your quality of life - have a list:

• social life
• sex life
• sleep
• work
• impact on family

etc

I think you did well to see an NHS consultant without having tried the pill and/or coil first. In my experience you had to have run out of GP options before even getting a referral! I ended up going private for fibroid treatment because the wait on the NHS was going to be months (and that was before covid) and the heavy bleeding was taking over my life - i had to take days off work or work from home it got so bad.
I suppose I already had a diagnosis when I first saw the private consultant but I would go armed with a full list of symptoms and how it impacts your life as @CornflakeMum describes above. They may want to do investigation procedures or may also suggest you try the pill/coil. I wouldn't expect them to jump straight into surgery options, they very much use that as a last resort.
I think it's only worth you going to a private consultation if you have the means to pay for any recommended investigations and treatment (you could be talking thousands). The options aren't really any different to what you're likely to get offered on the NHS, it's just a posher office and you get seen quicker.
One of my friends has terrible endo issues and takes the pill all the time and manages fine on it.

They may want to do investigation procedures or may also suggest you try the pill/coil. I wouldn't expect them to jump straight into surgery options, they very much use that as a last resort.
I think it's only worth you going to a private consultation if you have the means to pay for any recommended investigations and treatment (you could be talking thousands). The options aren't really any different to what you're likely to get offered on the NHS, it's just a posher office and you get seen quicker.
One of my friends has terrible endo issues and takes the pill all the time and manages fine on it.

I'm not letting them railroad me onto the pull. I haven't taken it for 10 years after I tried 4:5 varieties and every single on gave me depression/left me suicidal. So I've already made it clear to other doctors I'm not going down that road. I also am not remotely a fan of what I have read about the coil either. After the long history I have of problems, I'm not willing to have a coil in and potentially add to those problems.

It's £2500 for a lapse copy and I'm willing to pay that for an actual diagnosis.

If endometriosis is indeed the cause then a hysterectomy may not be the answer either because it can also involve other sites like the intestines. A hysterectomy would not address this and some endo patients do experience pain post hysterectomy too.

Yes I read this too but I don't understand how it's physically possible? I thought it hurt because when you get your period, you bleed and that aggravates the situation. So surely if I don't have a period, it won't hurt?! It's something I need the consultant to explain to me!

It's not just the bleeding in your uterus with Endo, the cells can spread to other parts of your body, as pp says to your intestines etc so pain wouldn't just stop with a hysterectomy- it's a huge high risk operation. Any doctor, private or nhs would investigate every possible outlet or option before suggesting hysterectomy.

If you can, at your appointment take someone with you, they often hear things you don't or can ask questions you might not think of.

Most private doctors work primarily on the nhs so just be prepared for that.

I hope it goes well for you, you get some answers and ultimately some relief x

It’s not quite that simple. You would need to have all of the endometriosis excised (not burned away but literally cut out) at the same time as the hysterectomy as endometriosis deposits seem to respond to oestrogen (this is the main theory anyway) and anything left behind can continue to grow and spread. Some have recurrence even after extensive excision surgery and hysterectomy but impossible to know whether something was missed or new deposits have grown. Either the oestrogen you produce or HRT can exacerbate endo.

Unfortunately there is no cure but excision surgery is the best option - some women only need one. Make sure that you see a specialist who can perform excision - ablation and diathermy are worse than useless.

My surgeon explained that even post hysterectomy unless they take your ovaries at the same time you’ll still suffer with endo pain from the deposits, they bleed regardless of the presence of your womb as they’re made of endometrial tissue which respond to the hormones produced in the ovaries.

Removal of ovaries puts you into menopause and premature menopause is responsible for lots of other issues like osteoporosis. You can also end up with bladder prolapse. It’s not a surgery to rush into.

I had an ablation to stop my excess bleeding and hopefully reduce pain. If it’s not successful then my next step is to try progesterone cream, then to remove the endometriosis and free my bowel from my uterus, if that fails then it’ll be a hysterectomy.

Sorry, I'm going to come across as rude now....but are you telling me that I am stuck with this shit potentially for the rest of my life?

Honestly I am so fucking done. My womb has literally done nothing for me. I'm infertile so bollocks to all of that. Every month I suffer for zero reason. And now I find that even having the whole ripped out won't necessarily help? Fuck me what is the point. I may as well cancel that appointment. No wonder the NHS don't give a fuck.

Sorry, I'm not angry at the responses on here.

It isn't just the pain though. Every month my body reacts like it has a horrific sickness and diarrhoea bug. It always happens in the middle of the night. I wake up with shivers, cold sweats, upset stomach and extreme nausea. I end up laying on the bathroom floor sweating and moaning with pain or sickness. It last about 3/4hrs and then I have to go to work like a zombie. It wipes me out for 2 days when I'm exhausted and generally feel like I've been run over by a train.

I just want someone to help me. I've got to a point where I can borrow some money to solve it myself and it appears that that won't be enough either.

Hey, you sound really stressed and frustrated, and I'm sorry you are going through this. Please go to the appointment, the poster - no offense may not know enough to advise you ,but the gynae woman will.

Good luck and don't despair. She may have the answer you need

You’re not being rude at all. It’s a shit bastard hand you’ve been dealt and I don’t blame you for being furious.

There’s options though, none of them are perfect and no there’s no cure for endometriosis but you can get treatment and the treatment is usually successful enough for you to move on.

I went through this, my older sister has periods that she breezes through as did my mother. They both managed fine with a pack of tampax and a paracetamol if it was really bad. I was so pissed off for years that I’d had to suffer and that all I heard was “have a baby, that helps” or “have more hormones”.

Don’t cancel the appointment, go, explain that you need to stop the pain and you can’t continue. Your gynae will help you.

No, not at all, but people were just trying to set expectations that you may not get offered a hysterectomy as it's not a guaranteed fix. Endometriosis is incredibly complex, no two women suffer the sane way or have the same symptoms or the same reaction to medication/surgery.

Keep the appointment, do lots of research about diagnostic processes and possible treatments available in the uk, ask your consultant lots of questions. Trust them and try whatever treatment plan they suggest and give it opportunity to work (ask them when you should be able to notice a difference if it works). Unfortunately a lot of endo/gynae/medicine is trial and error until you find the right thing to help.

I'm sorry, it's awful, but it is what it is. Best of luck x

Excision surgery could help you massively though.

For 10 years, I had crippling pain and diarrhoea every time I ate, within 15 mins. It was just normal for me. That was on top of the pain every day and horrific periods

specialist removed severe adhesions from my bowel and I’ve never had that problem since (13 years ago ish).

I’m still in pain and on strong painkillers every day but nothing like I was.

I also have adenomyosis so a hysterectomy may help, but I don’t know how much is down to the endo and how much is the adeno so don’t want to risk it.

Thank you for the kind words, it really is a bastard isn't it! I am incredibly frustrated with it all and I don't even have it as badly as a lot of women. It seems to get worse every month and that frightens me so much.

I'm so scared the first thing she will do is tell me to go on the pill or the bloody coil. My appointment isn't until the end of November so I will research and prep myself.

She may well do, they are the first line treatments but I would just say that you’ve reacted badly to hormonal treatments in the past and would rather have surgery to investigate and treat what’s found. Just be aware that the price you’ve been quoted may well be a diagnostic laparoscopy, excision surgery can take several hours.

If you’re seeing an endo specialist you could ask if an MRI is a possibility - I’ve had adenomyosis and adhesions picked up on MRIs but endo has never been seen on one, only in laps.

Please do not cancel this appointment. You will be listened to and heard; something that did not happen readily within the NHS either.

I do not think you were being rude either but I wanted to give you a heads up re a hysterectomy and the pitfalls associated with it when it comes to endometriosis.

I remember seeing photos of my uterus (these were taken with my consent and during my op for training purposes) a week or so post op and thinking, "no wonder I've been in pain all these years". My uterine cavity looked like a Jackson Pollack painting.

Endometriosis is the name given to the condition where cells similar to the ones in the lining of the uterus are found elsewhere in the body. This can migrate to other parts of the body; for example the bowels, ovaries and bladder and I have even heard of women suffering cyclical shoulder pain caused by endo.

Each month these cells react in the same way to those in the womb, building up and then breaking down and bleeding. Unlike the cells in the womb that leave the body as a period, this blood has no way to escape.

It is a chronic and often debilitating condition that can cause painful or heavy periods. It may also lead to infertility, fatigue and bowel and bladder problems.

Around 1.5 million women in the UK are currently living with the condition. I am one of these women and have suffered with endo from onset of menses at 14. The problem is it was not recognised by anyone medical and my mum also had no idea at all what was wrong with me (she did not suffer similarly). My endometriosis was mainly confined to my uterus and I had what was termed a "mild" form of this. But I went onto learn that "mild" forms can and do give great pain. It has also caused me in part to remain subfertile (I also was diagnosed with PCOS).I remember seeing photos of my uterus at my post op appointment a week or so post surgery and thinking that it looked like a Jackson Pollack painting.

There is also such a thing as BSGE centres re endometriosis in the UK; I have put up details of this site for you below:-

www.bsge.org.uk/centre/

I wish you the best of luck with your appointment, please see this gynae.

Do let us know how you get on. Would be happy to help further if you need it.

Can I ask how your ablation went with regards to endo? I had one on Monday and am curious if it’ll help the pain at all?

That was for @AttilaTheMeerkat

Thank you again for the kind words. I feel a bit of a fraud as the bleeding has never been an issue for me. I used to have abnormally light periods (ie only need a panty liner) and since the pain, I now have heavier periods but they are still what most women would deem to be light! Not sure how so little blood can cause so many issues.

I have visions of attending this appointment and throwing myself onto the floor and begging!

I really wouldn’t worry. The couple of times I’ve had private appointments they’ve been excellent. Do make sure they’re an endometriosis specialist though especially if you end up paying for surgery.