Pay for private hysterectomy to get keyhole?

[Oakbutterfly]

Hello

Do you think it’s worth paying privately for a keyhole hysterectomy? I’m currently due to have total abdominal hysterectomy (TAH) surgery in early Feb, but have been told it can probably be keyhole if I pay. (I'm currently referred to a private hospital by NHS, that only pays for TAH, but I could pay around £6000 and get it done privately by the same surgeon at the NHS hospital - ironically). I'm highly anxious.

Considerations:

• I have at least 2 calcified fibroids around 7cm from scan last a year ago. Also mild endo on an ovary.
• I’m 47, no children (so it does feel emotional) and had op for fibroids and endo removal in 2012 that went quite well.
• main symptom heavy menstrual bleeding. (Only during my period)
• main reason for wanting the surgery: so I can take HRT, without fuelling the growth of the fibroids (preferably without progesterone) and to stop the heavy bleeding (wearing incontience pants at night and pads with period pants in day) and need to take iron.
• the date for the surgery works okay for work, and it would be in a private hospital paid for by the NHS.
• if I pay privately it would be done in and NHS hospital by same surgeon in 3 months. Im nervous about the need for the fibroid shrinking injections with keyhole because of my mental health.
• I’m also quite fragile mental health wise and buying a house. I could stay with family during the recovery.

Basically wondering if it would be better for my mental health to pay for keyhole or whether I just go for the total abdominal now as it’s on offer and in a private hospital (own room which would help, but no intensive care). Is it worth getting a scan to see if they’ve grown? I guess if I’m going to need TAH anyway I might as well not pay for the keyhole. I’m so confused… but welcome any advice. I’m worried it even having it is a bit drastic as I can manage my heavy bleeding symptoms even if they are a pain. Mental health is my main priority.

I am not sure I can advise but I just wanted to say I’m sorry you’re dealing with this. Me too! And it’s massively stressing me out so I can see why you are worrying.

honestly I would ask;

• what is your job? How long can you be off work to recover?
• how urgent have they said it is?
• if not totally urgent I would ask to swap to a surgeon who can do keyhole
• also what reason have NHS given for not doing it keyhole for you?

i am supposed to have a robotic hysterectomy in a few weeks and I am dreading it! Also finding it very emotional. Appreciate I am lucky to be offered this on the NhS!

I don't have all the answers, but to respond to a couple of your points...

I also have (mainly rim-calcified) fibroids and was concerned, after starting HRT a few years back, about what impact the oestrogen might have having, and - if new fibroids were developing - whether I would need to consider hysterectomy. I asked my GP to refer me for a scan to compare with the one done after my UAE procedure a few years previously; to cut a long story short, the referral process was so circuitous I ended up having scans 12 months apart. As far as I can see, the old fibroids have actually shrunk, but a tiny new one has developed. So on balance, as my symptoms are mild, and I'm reluctant to tempt fate by making things worse, I've put hysterectomy plans on hold for another 12 months, with a view to repeating the scan to monitor developments. I had a myomectomy ages ago, and I got the impression from the consultant that scarring from that, plus the size of my fibroids/bulky uterus (thanks), might make it not so straightforward.

With regard to HRT, I had debilitating brain fog, crashing moods, aches, etc, in perimenopause and HRT sorted most of them out within weeks; for me, it's been worth the additional fibroid issue. I've tried to mitigate any risk (both cancer and fibroids) by getting more proactive about my weight/exercise/diet, etc, and well as forcing myself to be more 'on it' with the GP.

I appreciate your symptoms aren't mild, though. And I absolutely get the emotional side of not having children/having a hysterectomy; I was offered it as an option before my UAE, when I was mid-40s, and I just burst into tears in the (male) consultant's office.

Also can I ask why you say ‘no progesterone’ - has that fuelled the fibroid growth?

Reading again I think I’d definitely request to swap to a surgeon who can do keyhole unless there’s a good reason they’ve said they can’t offer you it.

I would have the operation that is right for the pathology that you have. It would be unusual for a surgeon to offer one thing in the NHS and another in the private unless there was some swizzy bit of kit available in the private that makes the operation there much safer/better (laparoscopic hysterectomy is bread-and-butter NHS stuff so if they're not offering as first line there may well be a good reason for it). Also worth remembering that doing an open procedure is always the back-up plan if things get tricky even if the starting plan is laparoscopic so paying for it doesn't absolutely guarantee it will end up being keyhole.

Thank you for this. I'm a therapist and academic lecturer teaching on a degree programme. I do get sick pay for the teaching.

I don't think it is considered that urgent - optional more like, but I guess the fibroids can grow. But my periods are very heavy and I'm sleeping in incontinence nappies. I would like it dealt with so I can start HRT. The reason I don't want progesterone is I got quite depressed when I had the Mirena coil so suspect I'm sensitive to it.

It's a strange situation. I was referred to a private hospital on the NHS because of waiting times, so I'm being seen more quickly. But they are only paid to do TAH by the NHS, not keyhole (I found this out a year into the process). I would have to go back to the main NHS hospital to get the keyhole, but this would either mean paying for it to be done privately there by the same surgeon. Or joining the end of the waiting list again.

Ah that is interesting to know. How did you find your UAE? I was a bit scared as they seem quite painful. I would love just to be able to take the HRT without any worries, but the GP yesterday said there is also an issue with the thick lining of my uterus which means they couldn't prescribe it.

yes - it's a strange situation I'm in - hence I think why I'm struggling so much.

• I'm being seen at a private hospital paid for by the NHS to reduce waiting lists.
• The private hospital is only being paid to do open surgery for this by the NHS (only found this out about a year into the process of being seen by them)
• If I want to go get key hole I need to go back on the waiting list for the NHS hospital or pay privately for the same surgeon to do it at the NHS hospital (with no guarantee as you say). It makes me quite angry.

Thank you for your comments.

I was booked with the NHS then they cancelled on the day so I went private. It was the same consultant either way so it was going to be keyhole either way. That is a very frustrating situation for you OP !

Have you been told that HRT definitely will make the fibroids worse? I'm in a similar position (albeit with different symptoms, not bleeding) and I've seen three separate hospital doctors so far, none of whom could give me a straight answer on whether HRT would make mine grow. One said "no, tiny amounts of hormones, no issues" one said "would definitely make them grow" the other said "meh, might do, might not".

A friend of mine was meant to have TAH for fibroids on the NHS but via a private hospital. Her surgeon had to retire/stand down a few weeks before her surgery and she was referred to a new surgeon who couldn't understand why he was only offering TAH and in the end did a keyhole fibroid removal. If I were you I would go for keyhole but appreciate that means a further wait (or forking out for it!).

Just be aware, your surgeon might start the op as keyhole but then have to revert to a regular opening - this happened to a friend due to complications discovered when they started the surgery caused by the location of fibroids.

Im sorry you are having to go private to access keyhole.
Surely, if it is possible to offer keyhole it should be offered on NHS considering it has a better outcome and healing for patient.

I had keyhole hysterectomy and had to go private as was during Covid and the waiting lists were really bad.

I did have the fibroid shrinking injections when I was still planning to be on waiting lists.
They caused me to basically suffer a breakdown.
When I spoke to the doctors they were unsurprised by this and said it’s common.

I would def choose private if the alternative is the injections.

My apologies, I re-read your OP and see the injections are suggested to be able to offer keyhole.

How big are the fibroids?
mine were 8cm and it was still possible to do keyhole without the shrinking injections.

Obviously not everyone reacts to the injections I did and I def do not mean to scare anyone but I would research them carefully.

When I had the injections I was immediately given estrogen to take.
However, this was done without checking my hormone levels.
I later went private to have them checked and found I have very high levels of estrogen and low progesterone.
One of the doctors believes it was the estrogen that caused the upset to my mental health.

I don’t know but I would research the injections and get hormone levels checked before accepting either treatment.

what does your surgeon recommend?

I had hysterectomy for fibroids however there was suspicion of cancer so they preferred abdominal hysterectomy.

it is a longer recovery for TAH but for me personally I would rather have that take the medication to shrink them then have Laporascopic- would it be zolodex?

Hi,
I had keyhole hysterectomy on the 27th Dec. I had it done at a private hospital via the NHS so no cost to me. I’m 38 mum of 2 who ironically works for the NHS.
I had everything out apart from my ovaries as I didn’t want to start menopause and luckily they were the only part working without pain for me. I had a meeting with the consultant 14th dec he reviewed notes, went through options again and if any further scans were needed. I was happy with everything so next part was pre op 23rd dec and I was in 27th. I knew there was a risk of being opened up but I’m lucky it wasn’t needed. My consultant made sure of all options and what ifs such as needing to remove ovaries during op or if something was found etc. I would discuss your concerns with the consultant as I’m sure they would have heard them before and can make a better personalised plan to help you get back on your feet.
recovery wise for me, I’ve not had too much discomfort just itching around wounds, I have follow up appointment already booked (before being discharged). I only stayed in one night in hospital, been advised 6weeks off then review. I’m just on the resting stage which is driving me mad as I’m a doer but I know this is the best way. Even though I have kids there was still a sadness about the op but I knew it would mean a better quality of life for me and I already had an ablation which didn’t help.
sorry to waffle on but if you have any questions please feel free to ask:)

I had this the other way around. The NHS consultant was saying that they could probably do a keyhole procedure, the private one said the size of the fibroids would mean abdominal surgery. I chose to pay because the waiting list would have been another 18 months on the NHS (on top of already waiting 18 months from being put on the waiting list - not even referral, that was another 8 months before that). I went for the private TAH procedure and have no regrets. Another thing to bear in mind: the NHS consultant did say that the recovery from the keyhole surgery would be easier but that the procedure itself was trickier (more risk of something going wrong).

thanks this is is really useful. They have now cancelled my surgery due to me asking questions, and invited me to come back in and speak to the consultant again. I am very concerned how they don't take mental health on board on all of this, as I had a breakdown in October and still feel quite fragile, so really don't want to mess with anything atm.

Thanks for this. I'm confused as to why the private hospital isn't offering me keyhole.

Thank you all for your generous response. I really appreciate them.

I've just had an email today from the hospital cancelling the operation, following an email I sent them last week with some questions. They basically said if I wasn't sure, they were going to give my place to someone else, and offer me another appointment with the consultant next month to discuss options. I'm a bit frustrated, but maybe it gives me a bit of time.

I'm in the middle of a house purchase, and my last one fell through in October, causing me to have a breakdown, so I think I need to be gentle with myself atm. I wish there was some sort of mental health adviser that could help with all of this - e.g. the mental health implications of these medical procedures.

I just want to be really careful I don't have another breakdown, and the anxiety around this op isn't helping.

Only posting to try and put your mind at ease a little. I have just had a robotic hysterectomy this weekend on the NHS due to pre-cancerous cells and I'm home after 2 nights in hospital. I'm only in pain when i cough, stand, walk or poo (and only a little bit of pain). Just on ibuprofen and paracetamol. Early days for me but, so far so good. Minimum 6 weeks recovery and cancer results back within 6 weeks.

I'm waiting to see how I feel once recovered from the surgery to see about any HRT or supplements to help with the hormone loss.

I'm relieved it's been done, the staff were wonderful.

I’m sorry to hear about the cancellation and can understand the frustration. Try and use the time to maybe write down questions or worries so when you do see the consultant you will get everything answered and it will hopefully ease any concern.
It sounds like you have loads going on in your life so appreciate you may feel overwhelmed trying to figure things out. Good luck and wish you all the best ☺️

How did you find your UAE? I was a bit scared as they seem quite painful. I would love just to be able to take the HRT without any worries, but the GP yesterday said there is also an issue with the thick lining of my uterus which means they couldn't prescribe it.

The UAE wasn't painful - you have to be awake, but you're given as much painkiller/tranquilliser as you need, so it's more uncomfortable/disconcerting than anything. A bit of cramping afterwards as the fibroids break down, but nothing worse than the period pain I was already getting. (Again, YMMV!) It did arrest the development of the fibroids; a few disintegrated but mostly they just died off and calcified, and my periods lessened a lot too.

It's funny/not funny how random GPs' attitudes are to HRT. Despite having fibroids writ large over my notes (it's the only NHS medical treatment I've had in the last 35 years), not one GP ever raised fibroids as a barrier to prescribing HRT. I asked the question myself to two GPs at my surgery, to the consultants I saw at the hospital, and to the private GP at the Newson Clinic, and none of them regarded it as an issue, or even suggested monitoring until I asked for comparison scans. Although, again, my symptoms weren't too bad. Is it worth asking your GP to go into more detail about what the actual position is with your uterus lining, and whether it could be managed alongside HRT? If it's a straight 'no, and here's why' - fair enough.

Sorry you're having all this stress, though. If your mental health is currently fragile it sounds like a good idea to take a moment, get the house move sorted out, and prepare a comprehensive list of questions and options, so that when you see the consultant you can put your mind completely at rest.

Thank you for sharing, this sounds quite positive. Can I ask, how long since knowing about the pre cancerous cells was it until you were in for surgery and also where are you in the country? I wish you all the best for your recovery and the results.

I was put on the 2 week referral plan after speaking to my GP about heavy bleeding. Was scanned 10 days later, then booked for a hysteroscopy a week later. 2nd and 3rd hysteroscopys carried out at 6 monthly intervals but still not happy so a hysterectomy was recommended. I saw the specialist beginning of November and had the op last week. Beginning to end was 13 months, with 12 of those being the 6-monthly hysteroscopy checks.

Can I ask a potentially stupid question. If they can give you injections pre surgery to shrink the fibroids, why isn't this the cure? If they shrink do they need removing still?

Zoladex decreases bone density, so shouldn't be used for more than a few months. When you stop the injections the fibroids are likely to grow again.