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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

to be very worried about DD having the HPV vaccine?

67 replies

JillBYeats · 22/09/2015 21:55

Recent reports have been frightening regarding the adverse side effects. I have a very sporty DD who would be devastated if her sporting activities were to be curtailed by effects such as "headaches, excessive fatigue, cognitive dysfunction, gastrointestinal discomfort, nerve-related pain, sleep disruption and light sensitivity."

I read extensively about the MMR 12 years ago and was happy to go ahead with it for DD so am not given to automatically following a panicked crowd. But I am quite worried about this - what experiences have MNers had???

OP posts:
Mrsjayy · 22/09/2015 23:25

Scare stories looks like im mocking you im not sorry Blush

ReRegRhonda · 23/09/2015 00:26

Yabu- it protects against a ridiculously preventable cancer. I don't know why you wouldn't. There is practically no scientific evidence that this vaccine is harmful.

travertine · 23/09/2015 00:44

I am thankful that my girls have had the opportunity to have this rather than years of treatment that I had and then a full hysterectomy at 34. It was their choice. May be a bit early tho to see what the side affects are, i would concede that point.

Skiptonlass · 23/09/2015 07:05

Jill - very interesting that you live in Ireland and there's been negative media reporting. So, have a think about the which particular rather powerful, socially conservative, religiously conservative body might have an interest in such negative reporting (hint, it's the same one which dislikes condoms and women's sexual freedom in general.)

But less cynically ;) The vaccine has a very good safety profile. I work in drug development these days and even when a drug/vaccine goes to market its still monitored - side effects are collated and examined and if patterns emerge they investigate. In some cases (vioxx for example) the drug is taken out of circulation. So far the safety profile is good. The list of side effects for any drug is huge because ALL side effects found in trials whether they were linked or coincidental get looked at by us.

Here's a daft but real example : patient is on the experimental drug and gets hit by a drunk driver. Breaks a leg and spends two days in hospital. We still had to fill out all the adverse event paperwork! If you open up a pack of any household drug like paracetamol you'll see a list of possible side effects a mile long. They have to list everything, no matter how rare or tenuous.

Personally, I think the risk/benefit ratio here is a no brainer. Hpv causes cancers which still kill far too many people and cause tremendous suffering, loss of fertility etc. I think a lot of the negativity over this vaccine is deeply mixed up with the fact that Hpv is often sexually transmitted. There's a powerful social conservative voice in society that's pushing the idea that this will turn our daughters into raging whores. Of course it won't, it'll just protect them against a very, very nasty cancer (and the boys too, indirectly)

Honestly, I would have the jab, and if I ever have a daughter, she'll be first in the queue.

MyVisionsComeFromSoup · 23/09/2015 07:25

DD2 was diagnosed with PoTS several years ago - she was very sporty, hypermobile (although we didn't know that was an issue at the time, it just made her sport easier), high achieving etc etc etc. She started fainting about a month after the final HPV jab.

BUT, since diagnosis and working out the best combination of treatment, we know that she was having symptoms from very young, way before the HPV jab. So at most, if there is a link, all that can have happened is that the jab triggered a more severe set of symptoms. She says that despite everything she would rather have had the jab than not. And DD3 chose to have it last year, with no problems at all.

To make the point again - DD2 had (undiagnosed) PoTS since before the HPV jab, and her symptoms got worse at about the age you'd expect symptoms to get worse, if they're going to. But PoTS can be triggered by all sorts of things IF YOU'RE SUSCEPTIBLE - accident of some kind, bad virus.

Brummiegirl15 · 23/09/2015 07:29

I'm sorry YABU

I wish it had been around when I was at school. I've had a lletz procedure and a cone biopsy and can't even tell you how many smears / biopsies. All highly unpleasant.

I'm now pregnant with my first child, a girl, and praying my cervix is up to the job. Had 3 internal cervical scans so far and whilst it's shortened a little, it's holding for the moment.

My daughter will be first in line for the jab.

Why would you willingly put your daughter at risk at having an entirely preventable, very unpleasant distressing disease?

That is my eyes is far more irresponsible than worrying about her sports

Ohwhatfuckeryisthis · 23/09/2015 07:38

Someone, somewhere will have a reaction to a medicine or a vaccine. I couldn't have my second diphtheria jab as I had a severe reaction to it (and when I was a kid diphtheria was a big thing)my ds2 had a reaction to one and has a horrible scar ten years later. It's a risk BUT it's a minuscule risk. Of all the girls who have been vaccinated how many have directly and Uncontrovertibly been affected by the vaccine? I'd go ahead, better than a lifetimes worry with a serious illness.

Grapejuicerocks · 23/09/2015 09:41

As someone who had cervical cancer several years ago, I'm obviously going to be pro the vaccine.

IloveJudgeJudy · 23/09/2015 09:56

I let DD have it. I discussed it with her beforehand, of course, and we both agreed she should have it. No side effects here, but I remember DD saying that a few people got a bit hysterical in the queue (not surprising, they're teenage girlsWink).

JillBYeats · 23/09/2015 10:03

I did not say I was not going to get her vaccinated I said I was WORRIED about the side effects. Thank you myvisions and skiptonlass and others who gave constructive advice.

OP posts:
Mrsjayy · 23/09/2015 11:01

I think there is always worry yanbu to be concerned and of course if by a slim chance she took a reaction you would blame yourself but i personally think the benefits outweigh the risks

motherinferior · 23/09/2015 11:05

No side effects apart from (a) a bit of a sore arm (b) protection against HPV. I feel (b) outweighs (a).

ghostyslovesheep · 23/09/2015 11:14

What does your dd think? I have told my daughter she can decide for herself and provided her with the information (scientific and legit not scaremongery websites) to make the choice - she wants to have it
Maybe discuss it with your child - it's her body after all

jorahmormont · 23/09/2015 12:03

I had it. My arm ached for about a day. That was it.

DrDreReturns · 23/09/2015 13:10

Not more anti vaccine rubbish. YABVVVU

BarbarianMum · 23/09/2015 13:13

Well, she doesn't have to have it (though really it should be her choice). She can just take her chances with cervical cancer along with the rest of us.

specialsubject · 23/09/2015 14:11

no vaccine is risk free. Life is not risk free and is in itself terminal.

I am also a little cynical that it is Ireland, that home of enlightened government attitudes and women's rights, that has all these scare stories.

discuss it with her, she is old enough to understand relative risk and make logically thought decisions. And hopefully brought up to be more intelligent than the blubbering hysterical girls who throw a fit over an injection. They can't all be needle-phobic.

and remind her that when the time comes, condoms are still essential.

kali110 · 23/09/2015 16:23

Again, i have all those symptoms from my disability.
I would still take them if it meant reducing my risk of getting several types of cancer.
After having several members of my family get ill with it, pass away and be with one till the end i have
The worry that i will one day get it.
1 in 2 people will get cancer, i would do anything to lower that risk.

howtorebuild · 23/09/2015 16:27

From my understanding most children will not have adverse reactions. The problem seems to be in vulnerability to autoimmunity and weak connective tissue.

DepecheNO · 23/09/2015 17:11

I've had CFS since about sixteen and was so ill with depression at the time that I refused the jab when it first came out. Had it at 22 instead. In other words, I still regretted not having it after six years! If I'd had it at sixteen, though, I'd probably have ended up blaming the CFS on the HPV jab. Shock

Cherryblossomsinspring · 23/09/2015 19:05

YABU. I wish I had had it. All my close friends wish they had too. I'd be bloody furious to discover as an adult that my mum had decided not yo let me get it. She only has you to make this decision for her but you can be sure when she has yet another abnormal smear that she will be very angry with you if you don't let her get it.

Caron2015 · 02/10/2015 18:50

I'd like to give the other side to the comments on this thread. I've spent 5 years researching this vaccination and the side effects, talking to doctors, scientists, researchers, because my daughter is one of the 'unlucky' ones who did suffer an adverse reaction, and there has been so much indifference to her suffering that we've had no choice by to spend thousands of hours doing our own research - so I'm pretty knowledgeable about it my now.

The OP mentioned the side effects: "headaches, excessive fatigue, cognitive dysfunction, gastrointestinal discomfort, nerve-related pain, sleep disruption and light sensitivity." Some posters have called them transient, or hysteria or better than having to deal with treatment for abnormal smears.

My daughter's experience of these symptoms are typical of the 100's of families I know in a similar situation - not a few, but a few 100.

Headaches, when they stike can leave her housebound for weeks, or even months - earlier this year she was pretty much unable to leave the house for nearly 4 months because of the headaches and nausea.

Excessive fatigue plagued her for 4 years following her vaccination and left her mostly unable to attend school - she was put on a 2 hour a day time-table at school but rarely managed even that. The fatigue sometimes meant she couldn't lift her arm to brush her hair or hold a glass to drink from. She often slept for 18-20 straight and still woke up exhausted. This isnt fatigue, it's mental and physical exhaustion like I've never seen before.

Cognitive Dysfunction has been the worst symptom for my daughter, and even now that she's on medication and can do more, it still plagues her. Prior to the vaccination she was a high achiever academically in arts and sciences. Within three weeks of the second vaccine she would never attend school again full time, her teachers had to be warned not to put her on the spot (on the rare occasion she was in school) because her brain just didn't work as quickly as it used to and she felt humiliated by the inability to answer even the simplest questions. She was pulled out of maths lessons in Year 8 and never had another one because her brain just wouldn't work and she described it as it being like a foreign language. She did manage a C in maths GCSE by sheer grit and determination teaching herself from home. Her cognitive problems include not being able to take in information, not being able to explain things properly, find the right words or understand simple instruction. She can do all these things, and she's still bright and intelligent, it's just that on some days, her brain refused to engage properly. She couldn't be trusted at 17 to make a simple journey by public transport or to go into a bank and complete paperwork to open an account etc - or to manage her own medication.

Gastrointestinal discomfort - that's possibly the understatement of the year. My daughter has been rushed to A&E on three occasions with abdominal pain so severe, the paramedics thought she was in trouble. She's spent days upon days doubled-up screaming with pain so severe it has caused her to pass out. She has nausea and vomits almost daily, when she's having a flare she can vomit up to twenty times a day for days on end, which obviously results in her not leaving the house. On her good days, she choses what to eat by how horrible it is when it comes back up. She's had endoscopies and biopsies several times and all are clear.

Nerve related pain keeps her awake at night and can affect her mobility and her ability to hold things, to write, to do much of what a normal 17 year old should be able to do.

Sleep Disruption was a killer for her, and is still the thing that warns a crash or a flare is looming. She can be exhausted but unable to sleep - this is torturous, and in fact sleep deprivation is used as a form of torture. My daughter is tortured with this regularly and she said on many occasions that she can't stand the thought of living another day and that living like this is worse than dying. That's one of the most difficult things for a parent to hear.

Light Sensitivity - this isn't just being a bit sensitive to light and needing sunglasses. The light sensitivity my daughter experiences means that she has to have the room as dark as we can get it. She cant used a computer or her phone or watch TV because of the glare and to go outside would be agony. This can last a few hours to a few days. There is also visual disturbances which distorts images and light which lasts much longer.

The OP didn't mention that many girls like my daughter have problems with excess hair shedding, with continual infections, with hallucination, with excessive sweating, with new and severe allergies, with muscle pains and aches, with painful joints, with movement disorders and jerks and tremors, with difficulty swallowing, with skin problems. These are typical symptoms in the girls, I've come to know over the 5 years my daughter has been ill.

The symptoms the OP described are not transient - they are lasting years and the medical professionals have no idea how to treat them - they are at a total loss. My daughter has been diagnosed with POTS, so at least she is having some treatment to help manage some of her symptoms, but all her doctors have agreed that POTS is just part of the story and they are still looking for clues to piece the rest of it together. Her neuro thinks it looks like an autoimmune problem but she has said they can only test for the antibodies they know about and this could be something has not yet been found.

For anyone who thinks this is anti-vax scaremongering, it's worth bearing in mind that the MMR issue was one doctor and it was largely contained to the UK. The HPV vaccine is totally different.

• It's given to teenagers who are able to articulate how they feel and explain symptoms (for those who feel it's hysteria, it worth noting that the Td/IPV booster is given in schools to year 9 or 10 teenagers and the same amount of fainting, nausea, dizziness etc isn't noted or reported with that vaccine - this booster has only a fraction of the number of ADRs reported as the HPV vaccine)

• Doctors and scientists from many countries are publishing case histories and concerns in reputable peer reviewed medical journals - published papers have come from doctors & scientists in the US, Mexico, Isreal, Denmark, France, Australia, Japan.

• There are support groups for families of affected girls in the US, Mexico, Columbia, UK, Ireland, Denmark, France, Spain, Italy, Portugal, Australia, New Zealand, Japan (- those are the ones I know about)

• The Japanese health authorities withdrew official recommendation of the HPV vaccination in 2013 pending further safety studies and research - it still hasn't been reinstated. I believe a large study is due out next year

• In June this year, Denmark opened 5 regional centres specifically for GPs to refer girls with suspected adverse reactions to the HPV vaccination for assessment and treatment. The latest reports from Denmark are that 1 in 400 girls vaccinated are being referred to these centres. Compare that the rate of cervical cancer in the UK which is 9 in 100,000

• The Danish Health authorities initiated a safety review of the HPV vaccines with the European Medicines Agency in relation to two serious neurological conditions - Postural Orthostatic Tachycardia Syndrome (POTS) and Complex Regional Pain Syndrome (CRPS). That review is ongoing and will conclude next summer. Parents in the UK are not being told the HPV vaccination is subject to a Safety Review as a result of a safety signal being identified by a European country.

• The Danish report recently submitted to the EMA included an analysis of the Danish adverse reports for the HPV vaccination compared to the WHO global database. The report states: "A comparison of HPV vaccines to all other vaccines in females,..., showed a consistency between HPV reports in the different age groups and a difference to all other vaccines." It also states: "Finally, the data suggest that there is an over-representation of serious case reports which describe a constellation of symptomatology and subsequent medical evaluation potentially consistent with a chronic fatigue-like syndrome which may be specific to HPV vaccines"

• The safety studies on which the 'good safety profile' is attributed to the HPV vaccine include:

  • the 'placebo' used in the clinical trials being the aluminium adjuvant used in the vaccine or another similar vaccine, and certainly not saline as one would expect;
  • the clinical trials being done with adult women and very small bridging studies being done with girls under 15 years of age (despite the immune systems of adults and children being very different)
  • the large scale post licencing studies most often quoted to 'prove' a good safety profile used over a million girls from the Scandinavian registries but used a pre-determined list of autoimmune and neurological disorders (POTS and CRPS were not included in this list!) and the follow up period was 180 days. This means affected girls who had not had a firm diagnosis within 180 days of their vaccination were not included in the figures. It took my daughter over two years to get a diagnosis of POTS - she would have been excluded from that study, as would most of the girls I know about. My daughter was still waiting to see a paediatrician 180 days after she became ill! The average time for a POTS diagnosis is 2-4 years and the average time to an autoimmune condition is over 4 years. This is why the 'safety studies' are not finding an increase in cases.
  • no studies so far have looked at symptom clusters following HPV vaccination

• There is a huge problem of under-reporting of adverse reactions in the UK - and elsewhere. My daughter has seen over twenty doctors and we have it in writing from two doctors that the HPV vaccine is thought to be the cause, but not one doctor or school nurse reported it to the MHRA who carry out ADR surveillance. This is common and typical. The MHRA's own presentations admit the reported figures represent less than 10% of actual Adverse reactions. Over 8,000 reports have been made with MHRA for the HPV vaccination, and of them around 2,500 have been classified serious (ie disabling, life threatening, causing death) - if these figures represent less than 10%, there are a lot of girls with ruined lives.

Before her vaccination, my daughter danced competitively and played competitive sport - that's what she lived for. She had to give up both just weeks after her vaccination. Prior to her vaccination she knew exactly what she wanted to do with her life and she had an incredibly bright future. The reality now is that she can no longer do the things she loves, her education has been decimated, her dreams are now fantasy and her future very bleak. As a parent I'm beyond devastated that my child may never work, may never be financially independent, may never have a family and may have to fight for scraps of the welfare system to survive. Two of my grandparents died from cancer and I've witnessed the devastation of my father being diagnosed twice with cancer (which thankfully he survived) - I know what cancer looks like and the devastation it brings, but I can hand on heart say I would rather my daughter had taken her chances with cervical cancer than have the bleak future she has ahead of her.

In fact, the kicker is that she could still get cervical cancer! This vaccination can only be claimed to lower the risk of cervical cancer not protect against it. There is NO firm evidence yet that this vaccine will reduce the incidence of cervical cancer - that data wont be available for at least another decade. The estimates which are claimed are based on very complex models which include very dubious assumptions (such as the vaccine offering lifelong protection).

My advice to anyone considering this vaccine is to seriously research as thoroughly as possible.

Apologies for the length of this post - it's a fraction of what I could have said and I want parents to know the facts that are not publicised

SteveCA7 · 02/10/2015 20:32

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ToadsforJustice · 02/10/2015 21:01

I wouldn't be happy with this vaccine. How do we know it works? How long does it last?

Cherrybakewells1 · 02/10/2015 21:01

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