We are posting our experience here in case it is useful, but this is not medical advice—every case is different and you *must* check with your own doctor!
After marrying in 2015, I began to suspect my wife might have an undiagnosed medical issue of some kind. She had been a professional cancer-research scientist for 10 years, a post which required a lot of patience and persistence in the face of challenge, plus she had been teaching and mentoring people as well as caring for family members, and I knew she had many good personality traits and certainly wasn’t a vindictive person by nature, and yet I was starting to see some inexplicable mood swings. I could have written that off as “probably normal”—I’d read books saying new couples can be in for some personality surprises, and I’d even read Australian journalist Richard Hughes’s characterisation of Chinese wives as “steel rods swathed in flowers” liable to angry outbursts at the slightest loss of face, but these mood swings seemed different from all that. Moreover, we were seeing a very gradual increase in frequency and intensity that seemed consistent with the idea that they might have been caused by some kind of underlying physical condition that was developing.
The first indisputable red flag came in 2016 when I wrote Primer Pooler to help her with a problem she was working on at a local genetics lab: apparently my software showed up an error previously made in the lab, and the resulting argument made my wife feel like rage-quitting her job. I could see the situation was having a very bad effect on her health, so I encouraged her to go through with quitting (which she did), but I also thought it very odd that someone who had been robust enough to work as a cancer scientist for so many years in Hong Kong would fold under pressure like this within 3 months of starting it in the UK, and I wasn’t sure that could *entirely* be explained by a difference in living and working environments between Cambridge and Hong Kong.
I’m likely overly biased in favour of suspecting undiagnosed medical issues after my own cortical visual impairment was not properly diagnosed for the first 15 years of my life, but even after trying to compensate for this bias, I kept feeling something must be actually wrong, and yet I felt powerless to do anything about the diagnosis of it. Leaving her high-pressure career did help, but over the next few years her problems got worse, and by 2020, after the local GP hadn’t been able to work out for some time why her blood tests kept showing iron-deficiency anaemia, she was reporting higher levels of monthly bleeding, and they tried to book her in for an endoscopy examination at the hospital but she cancelled it at the last minute due to mood issues and I was alarmed.
She *was* able to attend a hysteroscopy examination (I couldn’t be with her due to Covid-19 precautions), and the visuals were unclear but they saw something that looked to them like a polyps, and then they wanted her back the following month—the notification of this follow-up appointment did not state its purpose, and when we queried it by phone, they said it should have been accompanied by a letter explaining that they wanted to cut out the polyps. Their system said the letter was sent out; we have no idea why we never received it, but we don’t *think* it was the same kind of glitch that lost the 24,000 hospital letters in Newcastle or the 53,000 GP updates in Essex. Anyway, my wife was now thinking her symptoms were improving by themselves so she didn’t want to undergo another painful procedure unnecessarily and cancelled it. They said her case could be reopened within 6 months if her symptoms take another turn for the worse. As it happened, symptoms did hold off for more than 6 months and *then* started to get worse again after the hospital’s computer system had closed the case.
Early in 2022 she started to have trouble swallowing, and my own amateur sleuthing around PubMed led me to suspect that anaemia plus dysphagia means you should check for a blue tint in the eyes and if so then it’s probably Plummer-Vinson syndrome but check also for a small possibility of cancer. So we asked the GP to double-check that—after all I’m not a trained medic myself, just a random computer scientist with PubMed and a dictionary, perhaps what Dr John Jarvis of Wiley publishers was thinking of when he told the House of Commons in 2004 that more open access to this information could lead to patients “marching into surgeries and asking things” inappropriately, so we went out of our way to show modesty in what we thought we’d found—and the GP among other things tried again to refer her to the hospital for endoscopy, this time to check for that small possibility of cancer (the NHS tends to prioritise anything to do with cancer) and my wife again cancelled the endoscopy due to mood issues, suspecting that I’d found the wrong PubMed paper and induced the GP to be overly keen to run that test, giving her a painful examination unnecessarily.
But I hadn’t given up amateur sleuthing. Later in the year, as I was checking out the latest developments among student clubs and societies at the university Freshers Fair, I discovered that some students had recently formed a “Cambridge Femtech Society” and had organised some talks in Newnham College, including one by a Dr Sharon Dixon (GP and research fellow at Oxford) and Rebekah Lloyd (a founder) about the prevalence of undiagnosed cases of endometriosis. So of course I attended the talk, asked questions afterwards and came away pretty sure my wife had undiagnosed endometriosis—the symptoms seemed to fit, as well as the story of the local GP trying to top up the blood’s iron deficiency with more and more tablets plus ordering cancer checks but not thinking of referring her to an endometriosis specialist: UK GPs not having been trained about endometriosis plus patients’ embarrassment had evidently caused a situation where it takes the average woman 7 to 8 years (after serious symptoms start) to obtain even a diagnosis, let alone correct treatment. They did however say that things had sometimes moved faster in the non-NHS private medical sector.
Now it so happened that a local software startup company spun out of the computer lab, for whom I’d started to do some part-time work in 2016, had been sold to an American multinational corporation in 2018 and they hadn’t fired me yet (that didn’t happen until 2024 when they shut down the whole line of business because we were the only good part left or something), so at the end of 2022 (just when I had ‘endometriosis’ on the brain) I received the annual corporate email reminding me to choose any salary sacrifice and “perks” options I wanted for the year 2023, including an option of a year’s private medical insurance for myself and my wife. The medical insurance company they were using said they will not cover conditions that existed before the insurance term starts, but there was a loophole: they told me by telephone that by “existing condition” they meant a condition that has already been *diagnosed* before the insurance term starts. If it hasn’t been officially diagnosed by a medical practitioner and you just *think* you have it, that didn’t count as an “existing condition” for insurance purposes. (At least, not with that particular insurer in that particular year—rules can change.) So it looked like I’d found a possible way of speeding up that 8-year process of getting her an endometriosis diagnosis: for the cost of a year’s insurance premium docked from my pay, we could ask that insurance company to have one of their approved private practitioners take a look.
I did remember a schoolteacher in my childhood saying that “the rich” paying for private medical treatment were committing the sin of “queue jumping” and being unfair to everybody else, but when faced with this situation I was unable to see how consulting a doctor *who wouldn’t work for the NHS anyway* was possibly doing anything other than *reducing* the load on the NHS—it seemed different from paying to skip a waiting list for the *same* consultant, which is probably what that teacher had been talking about. And as it turned out, our brief foray into the UK’s private medical market ended up helping the NHS more than we’d realised.
In January 2023, we were able to arrange a video appointment with the company’s preferred private GP, who took 6 minutes of talking and 8 minutes of writing up to refer us to a gynaecologist to check for endometriosis *or* anything else it might be.
At this point there was a hold-up because the insurance company’s list of gynaecologists was out of date: some of them had switched to working for the NHS instead, and no longer took private patients, and it took us some time to ascertain that this was the case because phone numbers on hospital websites had gone out of date and secretaries were slow to return our emails. It took us until April to find a local gynaecologist we could actually see on this insurance. I reported all these glitches back to the insurance company in the hope that they will update their lists but I don’t know if my reports were processed.
The actual appointment with this gynaecologist was in May 2023, during which we discussed ultrasound scans, but due to her history of panicking about the pain of endoscopy, that gynaecologist said he was happy instead to refer her for an MRI scan.
Magnetic resonance imaging is technology I’d been a fan of ever since I read about it as a child (probably in an early edition of David McAulay’s book “The Way Things Work”) so I was able to encourage her about the scan—I didn’t go *quite* as far as commandeering the ball of string and the contents of the fruit bowl to demonstrate the spins of atomic nuclei being aligned by the magnetic field and then perturbed by high-frequency radio waves to generate a weak decay signal, but it was close. Back in the day it had been called “nuclear magnetic resonance” but presumably someone wanted to rename the medical version to make it sound less scary to non-physicists. Calling it ‘NMR’ did seem to carry a note of “finally we will get to the bottom of this” though—and it’s not *that* kind of nuclear.
The scan took place on insurance in June 2023 but there was a problem. (Well of course there was.) The nurse wanted to use a drug called hyoscine butylbromide (sold under the name “Buscopan”) to paralyse her intestine muscles during the scan, because their NMR (sorry, MRI) machine wasn’t all that fast and an involuntary muscle movement around the bowels would be enough to blur the result. (Presumably these things occur too frequently for “just redo the scan if it happens” to be a viable strategy.) The nurse went through a checklist of pre-screening questions for the paralysing drug, one of which was “do you have a high heart rate” and my wife replied “sometimes”. As I tried to explain, by that she meant nothing more than a normal person’s response of having an increased heart rate after activity or during illness (we’d last measured it as unusually high without obvious cause some 3 years earlier, and at that time it had dropped within 24 hours), but the nurse wasn’t sure: it seemed her mode of operation was that anything other than a straight unqualified “no” to all questions means don’t administer the drug. She tried to say don’t worry because it’s probably only larger people with larger bowels who have to worry about bowel movements disrupting the scan. So they ran the scanner without the drug, and there *was* an involuntary bowel movement and the scan *did* come out blurry.
They were kind enough to give us a copy of the data on a recordable CD-ROM—the images were multiple series of two-dimensional slices (from different angles) in the DICOM format. We were able to view these files on both GNU/Linux and Mac using the Apache-licensed “Weasis” software, and I also looked through Weasis’s Java source code to see if I could get the pixels into my own code and figure out a motion-tracking algorithm to undo the blur, but in order to stand half a chance of *that* I’d need exact timestamps of when each aspect of each set of pixels came in from the original unprocessed sensor signal—which wasn’t in the data, so I wouldn’t be able to do it unless perhaps I had access to all of the scanner manufacturer’s design documents and firmware source code which I don’t think they’d want to share.
(Incidentally, the act of visually navigating the scan slices without medical training can be awkward at first, because the angle of the slicing may not match the frontal view normally seen in anatomy diagrams, and of course nothing is labelled. It can help to use Weasis’s 3D viewer, which requires OpenGL—you may have a problem with this on some versions of macOS but we had a GNU/Linux machine with OpenGL working—it stacks the slices in a series to give you a better impression of which part of the body you’re looking at and at what angle. You can then switch back to the 2D slices once you have this in mind.)
In a follow-up consultation with the gynaecologist in July, he said that, although the scan was blurry, he’d still managed to identify the likely source of the problems—a large fibroid, misidentified as a polyps in the unclear hysteroscopy 3 years earlier, was embedded into the uterus wall, with a possibility of adenomyosis—displaced tissue on the muscular wall of the uterus, which the BBC’s Naga Munchetty later said had taken 32 years to be diagnosed in her case. It didn’t *look* like there was endometriosis as well but the blurred scan made it impossible to rule out, and he wanted to cut in and remove the entire womb along with any endometriosis he sees once it’s cut open, although he said her ovaries can be kept and will still produce hormones.
The surgery was provisionally booked for October (still on insurance) but my wife was very much concerned about side effects, plus she wanted to avoid having a high-risk blood transfusion—and due to her anaemia, it seemed that heavy use of transfused blood was highly likely; the gynaecologist didn’t really want to talk about ways to avoid it. So we asked the insurance company if we could be booked in with another gynaecologist for a second opinion, and they said yes, but then we had problems making that booking (one of the consultants on their list was a lady gynaecologist reputed to have experience at non-blood medical management plus a stronger preference for avoiding total removal when other treatments are possible, but she was booked up well into the following year which was outside the insurance company’s time frame for covering new cases, and so on)—but eventually we were able to find, and obtain permission to be referred to, a gynaecologist in Oxford who knew about high-intensity focused ultrasound treatments.
The humour was not entirely lost on us that a case too difficult for Cambridge would be sent across to Oxford, what with the two universities being traditional sporting rivals, plus stories about Cambridge having been founded by academics who were somehow “thrown out” of Oxford although that could have been exaggerated. Not that any of that worried us, especially if the UK’s *only* machine capable of high-intensity focused ultrasound was sitting in a hospital in Oxford. When using the Oxford buses I did get one driver remark on my disabled person’s bus pass having been issued in Cambridge but he still accepted it. Of course I wasn’t stupid enough to try to use my Cambridge alumni card to enter the grounds of an Oxford college.
There weren’t any currently-running direct public transport services between Cambridge and Oxford, so we had to commute via London each time. As I had her sighted assistance, we simply did King’s Cross–Circle line–Paddington, usually on a day-return ticket although on some weekdays it turned out to be slightly cheaper to buy a peak-rate return to London Underground Zone 1 followed by an off-peak return from Paddington to Oxford (which had to be bought *at* Paddington because the machines in Cambridge had not been programmed for that even in their “tickets from other stations” section and staff were rarely available at the times we had to start).
It wasn’t possible to save on train fares by booking in advance unless you knew in good time exactly which outward train *and* return train you will take, and we could never be sure about the return time (and the potential saving wasn’t enough to warrant having both of us wait around for late trains) so we simply used on-the-day tickets each time. At least I had a Disabled Person’s Railcard.
So in August we had our first consultation in Oxford, and he referred us to a professor whom we were able to meet in September, who met us together with another professor and the two of them had been coauthors in a study about the use of high-intensity focused ultrasound.
HIFU is basically an ultrasound version of the “Gamma Knife” running on the principle of combining many weaker beams of energy so they all meet in one place inside the body, so that part gets “zapped” while surrounding tissue is relatively unharmed. For the ultrasound version they beam in up to 400 watts to heat the unwanted tissue to 60 Celsius so it dies and *hopefully* the body then gets rid of it before it gets infected (with no surgery necessary) but they will need follow-up checks to make sure.
The approvals body ‘NICE’ (which *used* to stand for “National Institute of Clinical Excellence” before a 2005 merger) had only *just* approved this treatment for use in the UK after a study in China came in with a 45% burn rate (but much of that was slightly red skin rather than serious burns), and the professors thought the NHS *needs more experience* with the treatment and it would help to have some “success stories” and raise more awareness that it exists, so they can get more referrals and perhaps even get other hospitals interested in the machine. The USA had a “Focused Ultrasound Foundation” but there wasn’t much awareness in the UK yet, and one of the professors suspected some hospitals might even be financially motivated against cheaper treatments (hospitals are paid from central NHS funds for each operation they perform, and hysterectomy brings in 6 times the cash of an outpatient ultrasound treatment, but I wasn’t able to check the costs and profit margins of each).
And wishing to avoid blood transfusions and surgery side-effects seemed a good use-case; even treatments like embolisation (blocking the blood vessels feeding the fibroid) carry clotting risks that seemed greater than the burn risks, which are more pronounced if a scar is present (they said they wouldn’t treat people with scars).
So they put us back onto the NHS (because it’s the NHS that most badly needed the experience) and said one of them would be in touch about redoing the scan in October just to make sure—because the blurry scan wasn’t good enough (it was OK for diagnosis but not for treatment planning) and I suppose they didn’t want to risk trying to ask Cambridge to do it again—never know what you’re going to *get* asking *Cambridge* so best run our own scan in Oxford. He said that treatment should be able to take place very soon after the scan.
(Helping them raise awareness was why we decided to post our experience here: my wife originally wanted to keep her condition private, but raising awareness of treatment options seemed more important.)
So the October scan was delayed until November, and meanwhile my wife’s pain and bleeding was getting worse so we asked the insurance company if we could have one more consultation with the original private gynaecologist in Oxford (who’d said he could see us again remotely if necessary) to ask about drugs to control the situation temporarily while waiting for treatment. He gave us a letter suggesting some, but my wife was nervous about taking such potent things into her body and we didn’t initially do anything; she tried paying for acupuncture for pain relief (which I thought was probably a placebo effect, but I didn’t want to say anything that risks *hindering* a placebo effect); the acupuncturist also prescribed Chinese drugs which my wife started to take but later stopped due to concerns about the possibility of poisonous metals being left in their manufacture, but she kept the acupuncture going.
The November scan turned out to be an ultrasound scan, *using* the actual HIFU machine but on a low-intensity “scan only” setting, with the professor plus a student radiologist, and part of the scan involved having tepid water rise up to the underside of the body followed by the probe (we hadn’t got the message to bring swimwear or spare underwear, but this was later written into the patient information leaflet). I didn’t get a close look at the machine myself, but evidently its designers had placed the high-energy transducers at the base of the water bath, using water to reduce the density difference at the interface and thereby minimise the refraction, which makes sense as you *don’t* want the focus of those 400-watt ultrasonic blasts to go in a *different* direction from what the surgeon says just because of random atmospheric conditions in the ward. It also makes sense for the low-energy probe transducer to be rigged up in the same water environment so as not to throw off the targeting display.
The scan showed that 50% of the fibroid was pressing into the lining of the womb (rather than the muscle wall) and it made them concerned that being too close to the cavity might increase the risk of infection after treatment, which could in the worst case mean the uterus would need to be removed just as in the procedure we’d been trying to avoid, but there was still a good chance it wouldn’t turn out to be that bad. But the fibroid had twisted the endometrium so it was hard to check that, and they said it’s possible they might be able to treat only 50% of the fibroid (the part near the muscle) to avoid the risk of endometrium damage, and that treating only 50% of it might not turn out to be enough to relieve symptoms: they thought they’d need to get at least 70% of it for that *and* the non-treatable part in the endometrium is more likely to be the part responsible for the symptoms. But there was still a chance that ‘zapping’ the other part of the fibroid (including its blood vessels) would lead to *secondary* damage to the part in the endometrium (without damaging the endometrium itself), leading to a reduction of symptoms over time.
At this point I was almost expecting them to press the button to switch to the machine’s high energy level and say “let’s try it now”, but they wanted first of all to order a “contrast enhancement” of the scan just to make sure—and that was another manual process for which we had to wait. (I did say “send me her data and I’ll try throwing it at MimickNet” but that went down the way things *usually* go when I talk about free/libre and open source software to people who aren’t used to it.)
The contrast enhancement lab took their time, and then there was a computer problem with her hospital registration in Oxford, *possibly* related to the fact that somebody had typed in our street address with the house number backwards and it took us ages to catch all copies of that—it’s just as well these documents were delivered by email, because the occupants of the wrong address they could have been sent to seemed to have gone away (and the Post Office redirection service said it’s not allowed to try to redirect mail from an address where you’ve never lived, even if it does have your name on it). We kept trying to call to check what was happening but we ran into more phone numbers being out of date on websites (like the number listed for “Administration Offices” now going through to Maternity; I tried emailing the webmaster about every problem we found but I’m not sure if anyone was reading that address) and various people “not really having offices here” and at one point we went back to the *other* professor to ask if he could double check his colleague hadn’t forgotten us, and by February 2024 she was in much more pain (and frequently leaking enough blood to make the bed look like a murder scene) so we asked our local GP to double-check that the letter written by the consultant the previous autumn was still valid and prescribe those strong drugs (which they did in an emergency same-day appointment) and we got them into the house although she was still too nervous to take them as frequently as she could. She was worried that perhaps the hospital had decided not to treat her after all and forgotten to say, and wanted to ask if our savings were enough to pay for faster treatment in East Asia but that wasn’t really an option because by this time we had no idea if it was still safe for her to fly in an aeroplane in her worsening condition (especially on a long-haul flight), although it might have been possible to take a ferry or the Channel Tunnel to Europe if a hospital in Germany could do it but it still seemed quite risky.
Finally in March 2024 they were able to call us over to Oxford again, this time for an MRI scan, because the ultrasound scan from November hadn’t told them quite enough even with the contrast enhancement. So she had a second MRI, this time *with* the Buscopan, and the professor saw it and became more confident that the treatment can go ahead.
But then there were delays due to various administrative staff being on leave (the system didn’t make it easy for others to step in when that happened), and then we had to wait for the anaesthetist to confirm their availability (it wasn’t surgery but they still wanted her anaesthetised because one false move could lead to the wrong part of her being fried) and there was a holdup with that. By mid-April my wife had additionally developed chronic lower back pain, possibly because the fibroid had started to press on a nerve there, and then we learned it wouldn’t be possible to be treated until at least June due a shortage of theatre support staff.
A date was booked for June, but he said to tell them as soon as possible if it’s likely to coincide with menstruation because the treatment cannot be done at the height of the menstrual cycle. Well I’d been asking her to log her periods since 2022 and I was able to convert it all to Unix time values for NumPy but the variance of the deltas, even with outliers removed, came out too high to make a meaningful prediction more than 1½ cycles in advance, probably because the fibroid was destabilising the cycle. We’d be unable to put a confidence interval on the June one until we knew when the May one occurred, so we couldn’t give an immediate meaningful reply, but once the May one did occur, I was able to say there was a 72% chance the June date would be clear.
Once we told them that, they confirmed the operation date, sent us another questionnaire (we’d filled in a few by this time) and booked a pre-operation check a week before the actual operation, and sent us a draft copy of the patient information leaflet (it hadn’t yet been finalised, but it was mostly OK modulo a few English mistakes as not everyone on the team was a native speaker)—it talked about eating no food for 24 hours before the treatment, and said their safety precautions may also include an enema, continuous intravenous sedative, blood monitoring, compression stockings to avoid deep-vein thrombosis, and possibly an extra night of monitoring. The leaflet clarified that the most likely outcome is the fibroid will shrink rather than completely die, and it’s not impossible for it to grow larger again at a future time, but the procedure could be repeated if necessary.
The leaflet also mentioned a tube to control bladder contents, which we later found was actually because they wanted to control the *size* of the bladder—pumping in saline solution to enlarge it, or pumping out to shrink it, as required to help push other parts of the body nearer to or further away from the HIFU transducers, because the HIFU transducers had a limited focal range. This bladder control tube was simply inserted via the opening after anaesthetising the area (no surgery was required).
They told us they wanted to start at 7:30 in the morning, so we found a nearby hotel for the night before—St John’s College Cambridge did have reciprocal graduate-accommodation arrangements with Linacre College Oxford which were open to alumni but Linacre’s guest rooms had already been booked for that day; their accommodation manager did however point me to a B&B within walking distance of the hospital which somehow hadn’t shown up on our search—this turned out to be expensive and noisy (they gave us a room at the front facing London Road) but it meant we wouldn’t need transport to the hospital in the morning. (St John’s also had reciprocal guest-room arrangements with Balliol College, but these aren’t usually bookable by alumni.)
The pre-operation check a week before turned out to involve a blood pressure test and taking a couple of blood samples (we telephoned the next day to check their test results were within the parameters of the procedure), and prescribing a bowel-emptying drug which took the pharmacist 45 minutes to prepare. They also printed her a sticky wristband as if she were going to be an inpatient; presumably they do that for everyone just in case.
Then on the day we had a student nurse take blood pressure again (along with height and weight), go through more questions and attach *two* wristbands (one on each wrist—after all, if there *were* an emergency we wouldn’t want anyone to spend precious extra seconds thinking about *which* wrist to check), and labelled the overnight bag. Then a talk with the anaesthetist which felt very much like another worst-case scenario flight safety check (they *expected* to just use a sedative, with general anaesthetic only as a fallback if that didn’t work, but they had to ask questions that seemed more suited to full open surgery, presumably just in case an emergency happened—you don’t *expect* the plane to crash but you have to be ready with an evacuation procedure anyway), and then finally a talk with the professor who was to operate the HIFU machine. He reminded us about the risk of infection, saying we’d be prescribed 5 days of antibiotic tablets just in case and we should go to our local hospital if more blood is discharged, and said there was also about a 1 in 5,000 (0.02%) chance of damage to the spine or rectum (a larger study in China had enabled them to quantify the odds, rather than just saying “oh there’s *some* chance of this”). He also said the most recent MRI scan had revealed a smaller, second fibroid in the mucosa, close to the cavity, which they weren’t going to treat due to its higher infection risk but some patients discharge all fibroids anyway after HIFU.
And then, they gallantly tried all morning and lunchtime to get somewhere, but there was a problem.
The JC200 HIFU machine has a safety range limit of 15 centimetres from the transducers to the focal point. This information did not appear to be in any of the downloadable brochures on the manufacturer’s website, but presumably they tell the surgeon. It makes sense physically: try to focus too far through variable-density tissue and you’ll start to lose your positioning accuracy fast. (It probably *could* focus further away but at a huge risk no surgeon wants to take, so hopefully the firmware has a low-level safety lock on that just in case.)
The transducers were below the patient, and the patient was lying face down, unlike in the face-up planning session with the extra portable probe. (That was possibly a small mistake there: testing in planning using slightly different conditions. At least now they know!) When the patient was face-down on the machine, gravity did its thing and pulled the bowels into the way of the beam—and they couldn’t get the target any closer than 20cm to the transducer, which was 5 centimetres too far.
Turning the patient over was not an option (fibroid would still be too far even from the back). They said they’d tried a few tricks to move the bowel, like the bladder control thing: I later found the literature calls this the “BRB manoeuvre”—see for example Verpalen et al 2020 which reported on a Dutch study that managed to decrease the treatment failure rate from 20% to 2% by combining it with certain massaging; I don’t know if they were able to try *that* in this case, but I’m only a computer scientist looking up too much stuff on PubMed. Anyway, none of their attempts at Oxford could get that fibroid within 15 centimetres of that transducer, so they didn’t dare fire the thing.
It’s important to note at this point that HIFU *does* work for lots of people—just not for everyone. Perhaps it was a small mistake that the planning session failed to give us an early warning of a problem that manifested only “in production”, but it’s hardly unexpected that such things can occasionally happen (I know they do in software!)—it’s a pity we didn’t actually end up being treated after all the build-up, but at least the event provided a bit more experience for the NHS with their new machine.
The professor said he’d write a letter to hand the case back to our GP, so we made an appointment to discuss being referred to an NHS gynaecologist to re-discuss conventional options—perhaps someone *else* might have some idea how to reduce that transfusion risk. Our GP wrote a referral and we received a letter from the hospital saying an appointment had been made that did not require attendance—presumably their system’s only way of reserving time for a specialist to look at the case.
At about the same time we also had in the results of a genetic test that had been conducted by the local hospital as part of a separate investigation into ongoing bone weakness: the lab found a defect in a collagen-production gene that annoyingly overrides the other working allele (a dominant mutation) which finally explained her lifetime problems with *that*—not directly related to the fibroid except that it can limit the available hormone treatments: they’d suspected this for a while but it took 2½ years to get a definitive test. The follow-up appointment to discuss *this* was scheduled for 3 months later.
Meanwhile, while we were in Oxford we at least asked about our concern about long-haul flights in this condition, and he said it should in fact be OK for my wife to visit her family in Hong Kong if she wants. This led her to make an enquiry with a commercial treatment centre in Taiwan (hoping the exchange rate would reduce the cost): they asked for a copy of her MRI scan, but we had only the first blurry one, not the second good one.
I had tried to ask the Oxford secretaries for a patient copy of the second MRI scan; they sent us an encrypted DVD 10 weeks after the scan, and a separate letter with a decryption key that turned out to be incorrect. I assumed their technician must have typed it in wrongly, so I tried to fix that on our side: they used 7-Zip, which is based on a 256-bit AES cipher with no publicly-known vulnerabilities, so I just wrote some code to try brute-forcing a couple of million variations of the password we’d been given. But it didn’t work. A month later they sent us another password, but that was one my program had already tried, and changing my code to use it as a starting point for additional variations didn’t work either. So I asked them to resend the data, which they were able to do in another 3 weeks (this time electronically with a download OTP sent to the patient via SMS) and we were finally able to load it into Weasis.
At this point we got a surprise: both the womb and the main fibroid were 30% smaller in March 2024 than they had been in June 2023. I checked a couple of skeletal aspect ratios against the previous scan, to make sure they hadn’t mixed her up with another patient (which would be quite hard to do when the patient metadata is embedded in the DICOM files, but after the password mix-up I had to double check); that checked out. Also there had been some uncertainty about the 2023 size due to the blur of that first scan, which made it harder to see where exactly the boundaries are—my own check in Weasis suggested that the 2023 technician had written down an *upper bound*, but my amateur reading of the corresponding lower bound still showed some shrinkage. Fibroid shrinkage is not impossible, but the symptoms had been on a *worsening* trend over this time, whereas a 30% reduction in scale means about half the surface area to bleed from (recall 0.7²=0.49)—but then, just as not all fibroids are symptomatic, it stands to reason that not all *parts* of a symptomatic fibroid are equally responsible for the symptoms, so severity is not always proportional to size (and we didn’t even know for sure that the largest fibroid *was* the symptomatic one—after all there *was* a smaller one, and it’s not unknown for the smaller one to be the problem although that’s less common).
The new knowledge that the largest fibroid had been shrinking led us to think that (1) the commercial operation in Taiwan that my wife had been considering might no longer be the most appropriate procedure and (2) if the fibroid had *continued* to shrink since that last scan, even if merely at a sublinear rate, then there was a good chance it was now lower than the 6-centimetre threshold which had previously ruled us out of being treated by a “Sonata System” RF-ablation machine.
The Sonata system irradiates a fibroid with a localised 500kHz RF oscillation from a small probe inserted into the womb, guided by a normal low-intensity ultrasound probe from the outside—transcervical ultrasound-guided radiofrequency ablation—and we’d previously found a patient-information page that said it can treat fibroids up to 6 centimetres and the only Sonata system in the UK was at Imperial College London’s St Mary’s hospital. This turned out to be out-of-date information: the manufacturers had put up a page listing 15 hospitals in England and Wales that had had Sonata systems installed as of 2024, one of which was our local NHS hospital in Cambridge and the names of two consultants were listed as affiliated with that installation.
Unfortunately the hospital website was continuing to list rather a lot of people as having email addresses at addenbrookes.nhs.uk even though that domain was no longer resolving to any kind of mail server (somebody changed the domain, didn’t leave a redirector and didn’t update everything—not how I’d have done it but still). We asked our GP to add the new information to the in-progress referral.
We will update this page as things progress.
All material © Silas S. Brown unless otherwise stated. Apache is a registered trademark of The Apache Software Foundation. Buscopan is a trademark of Boehringer Ingelheim Vetmedica GmbH. Gamma Knife is a registered trademark of Elekta Instruments, Inc. Java is a registered trademark of Oracle Corporation in the US and possibly other countries. Linux is the registered trademark of Linus Torvalds in the U.S. and other countries. Mac is a trademark of Apple Inc. Post Office is a registered trademark of Post Office Limited. PubMed is a registered trademark of the U.S. Department of Health and Human Services (HHS). Railcard is a trademark of ATOC Ltd. Sonata System is a trademark of Gynesonics, Inc. Unix is a trademark of The Open Group. Any other trademarks I mentioned without realising are trademarks of their respective holders.