Mesh implants and autoimmune disease: I was... - PMRGCAuk

PMRGCAuk
10,719 members19,409 posts

Mesh implants and autoimmune disease

Gaijin
Gaijin

I was watching a morning news program on BBC when they started talking about mesh implants, how the procedure has been probablematic for thousands of people. I have a mesh implant which was painful at first, I could actually feel something sharp pricking me but then it gradually got absorbed and I never gave it another thought. But today, I heard a woman on the BBC program describe her experience post mesh implant. She said she began getting one autoimmune condition after another, she put two and two together and came to the conclusion that it was all due to the mesh surgery. I then Googled and found there is a lot written on the subject. I'm kind of freaking out because having the mesh removed must be quite complicated and probably not covered by the Spanish health system.

In the UK, this type of surgery has been reduced to very special circumstances, the reason for the special report on BBC today.

It will be interesting to see if there are more people on here that have had mesh implants.

m.medicalxpress.com/news/20...

37 Replies
oldestnewest

Very interesting Gaijin, it makes perfect sense in effect the body would be attacking itself. Isn't that what an autoimmune disease does?

I read about this yesterday. Hope all goes well for you.

Hello Gaijin - interesting to read your post as I believe and so does my Endo & Rheumotologist that the underlying & continuing cause of my PMR has been my AI reaction to a mesh implant in September 2016.

My problems started fairly quickly & painfully after the procedure and although there were no issues with the surgical success of my implant my body certainly didn't like the fact it was there! I have had ME/CFS since 1992 and have had a pattern of moderate to severe symptoms since that time. But, adding the mesh implant problems to the equation meant a whole new dimension to the term - suffering.

Both the Gyno & Endo who were involved in my care felt that my AI reaction would settle given time as the surgical removal option was just too risky (for me) to even consider.

My CRP levels have been raised - though not dramatically - but consistently so since the insertion of the mesh. What seems to have actually happened with the passage of time is that my inflammatory levels have continued to increase and eventually manifested themselves quite acutely in January of this year as PMR although my diagnosis was only "officially" confirmed last week.

There are many women who have, without a doubt, benefited from this procedure with little if any problems whatsoever. However, there are many women who have suffered almost mutilation because of the erosion of the mesh in their pelvic area. Add to that the effect that has had upon their lives and you have yourself a horror story and a medical scandal.

I've kept myself apace with "mesh stuff" over the last couple of years and there is a very good Facebook Group called "Sling the Mesh" who have been instrumental in raising awareness both in the media and parliament.

If you have the time to read my recent post "Advice on Controlling a Flare-up" it highlights and refers to my present and ongoing problems with the implant.

I don't believe you have cause for concern at this point if you have no issues with the mesh implant - but it makes sense to be vigilant and aware of the problems that can arise.

I wish you well - Kathy

facebook.com/groups/7842637...

PMRpro
PMRproModerator
in reply to Pipalina

What I find interesting is that I had a metal plate for a broken leg. Here in Italy and probably most of mainland Europe such plates are removed after a year or so. In the UK the policy was to leave them in situ unless there were problems. I never felt "right" but luckily for me there was a small sinus along a screw and walking for more than a very short time caused inflammation because it moved. So they decided to remove it. Within a few days of it being taken out I felt so much better. If our bodies react to supposedly inert metal - what does that say about plastic????????

Pipalina
Pipalina
in reply to PMRpro

What it says to me is that many women have been somewhat mislead about this so called "inert" material. I've put an excerpt from an article written by Kath Sansom, founder of Sling the Mesh, last year but it sums up why it's anything but inert!

“Mesh can be fine for years then suddenly shrink or degrade. This happens because the material is not inert – it can change inside the body. Years after implantation it can shrink, twist, harbour infection, go brittle or degrade. Unlike drugs, which have to go through a strict set of three trials, mesh has been approved for use according to a system called substantial equivalence, which means a product can be passed on the basis that there is already something else like it on the market.”

theguardian.com/commentisfr...

Gaijin
Gaijin
in reply to Pipalina

Wow! This is really an eye opener. Thank you, Kathy.

I'm wondering why you have been told it's too risky to get the mesh removed? Is it just the risk of being left with a worse condition than what lead you to get the procedure in the first place?

Pipalina
Pipalina
in reply to Gaijin

Hello - in my case, the discussion was more related to the likely success of the surgery in terms of a complete removal of the mesh, increased additional complications or symptoms and whether my immune system would actually settle itself back to its pre-mesh state (not too great then) after removal.

Because your tissue grows into the pores of the mesh to create a wall of support my Endo likens the removal to trying to remove chewing gum from your hair.

As far as my choices are concerned I think the terms is..between a rock and a hard place!

PMRpro
PMRproModerator
in reply to Pipalina

Exactly what I meant! What on earth makes anyone think it can be used "just like that" - it horrified me when I read the background! Metal bothered me - plastic isn't inert so the potential is really scary to me.

Pipalina
Pipalina
in reply to PMRpro

It certainly is scary. I am quite sure we are going to hear of many more women suffering from the consequences.

Urogynaecologist Sohier Elneil of UCLA, one of the few consultants experienced in mesh removal, recently told Sky News, “It’s a huge problem. I think it’s bigger than Thalidomide, because the numbers of those affected are much more. And if we look at the problem globally then it’s worse than the metal-on-metal hips and the PIP scandal as well.”

I posted a question on the Sling the Mesh fb page about a year ago asking if any of the members had developed PMR since the insertion of the mesh. There were about 2000 members & now there are 7000 plus. My post was somewhat hijacked at the time by someone extolling the virtues of cannabis oil, where you could buy it etc etc. I think it might be worth asking the question again...

PMRpro
PMRproModerator
in reply to Pipalina

Certainly would - why can't people stick to the question asked when it is something like that? Start your own thread to tell me that monkey-dust will cure me! Not that I'm suggesting CBD oil is monkey-dust - but there is no proof of anything.

Pipalina
Pipalina
in reply to PMRpro

I've just posted the question to the fb group - so will let you know if there are any interesting responses. Just off to binge watch a bit more on Netflix or whatever - easy undemanding entertainment and at least it makes me put my feet up and rest a little!

Pipalina
Pipalina
in reply to PMRpro

Me again - didn't get my moronic entertainment session this afternoon as my fb Sling the Mesh post kept "tinging" in response to my post.

I've only had about six women respond to the post so far but most of them had some sort of auto-immune disorder before the mesh insertion. Hypothyroidism seems to be a common theme but too early to conclude.

What can be concluded is that all these women went on to develop an array of illnesses post mesh insertion - PMR, ME/CFS, RA, Peripheral Neuropathy, Sjorgens Disease , Celiac...the list is likely to go on and on...it's disgraceful really if not scandalous!

To me the distressing conclusion is that these illnesses only manifested themselves after the women had their mesh implants - why couldn't someone join up the dots and see that women who had AI issues might not be the best candidates for a mesh implant?

PMRpro
PMRproModerator
in reply to Pipalina

Now THAT seems a very basic exclusion that would have been a good start! But you know the real problem: most doctors have no clue at all about a/i disorders nor the potential problems a deranged immune system can create.

Gaijin
Gaijin
in reply to Pipalina

I've only found one study, a very small one, that relates mesh to AI disease, a study from the University of Alberta. In all the other lists of symptoms from the mesh implants, it only lists neuromuscular symptoms.

So I bet I'll be brushed off when I try to bring it up with any of my

docs here but I am preparing my presentation carefully this time!

stellafmdm
stellafmdm
in reply to PMRpro

So what about joint replacements? Does the same apply?

PMRpro
PMRproModerator
in reply to stellafmdm

Who knows. Titanium is supposedly very inert. And the best hip prostheses were the first, all metal ones. There were problems with the ones with plastic in them.

Pepperdoggie
Pepperdoggie
in reply to PMRpro

Have a metal on metal steel hip replacement (Birmingham Hip Resurfacing). Idea being for younger people the next replacement is a simpler procedure! 11 years so far for mine & no problems. Seems some companies products were not up to the same standard! Problems with cobalt etc leaching into tissue! Had measurements taken on this with a blood test 5 years ago & they were ok. But you never know how it effects the immune system! Ceramic or Titanium I would think the best! Too expensive!

Gaijin
Gaijin
in reply to Pepperdoggie

Yes, the alternative to mesh implants is a complicated procedure , metal is inert whereas surgical mesh is made out of material that shrinks or becomes brittle and dislodged.They are calling this the biggest pharma scandal ever.... even bigger than thalidomide!

piglette
piglette
in reply to Gaijin

There is an article in the BMJ (British Medical Journal) this week. MESH how it became a four letter word.

Gaijin
Gaijin
in reply to Pipalina

It was precisely Sling the Mesh that was featured on BBC News this morning.

My surgery was about 8 to 10 years ago, the only problem I've had after the inicial pain( like a had a wire inside of me) which lasted for a year or so, has been occasional bleeding, only a few drops, but still, it's something that scares me everytime it happens.

I'm pretty sure the mesh was made out of plastic, I'm going to try and find out what kind exactly from the hospital where I had it done. I was told at the time that it was the newest product and that it was absorbable, that it would blend in with the tissue.

Thank you for your post, Kathy, I've joined the fb group. I'm sure I will learn much more on the subject.

I hope you get relief soon, in your situation, not being able to get it removed must be so difficult. It seems removal is a very delicate op requiring a highly skilled surgeon and is quite risky for anyone.

Pipalina
Pipalina
in reply to Gaijin

Hello Gaijin - and thanks for your reply.

The mesh is made from polypropylene = plastic, although, there may well be other absorbable components in there as well. I have just replied to PMRpro above and put an extract from an article written by the Sling the Mesh founder who pretty much dispels the myth of it being inert.

I need to revisit the discussion about the options and risks surrounding the of removal of my TVT mesh because the quality of my life at the moment is so poor and so unpredictable.

I believe that NICE guidelines have already deemed that removal can now only be undertaken at specialist multidisciplinary centres in the UK.

It makes sense for you to find out what type of mesh you had inserted but I hope you continue to be problem free...

Best wishes to you - Kathy

PMRpro
PMRproModerator
in reply to Gaijin

Being absorbable and blending in with the tissue are 2 very different concepts in my mind. To me, one means it dissolves away and is lost from the body and the other is that it becomes covered by the tissue cells, making it almost impossible to separate it at a later stage without causing damage to the surrounding tissue.

And we know that plastic in the environment doesn't dissolve away.

Gaijin
Gaijin
in reply to PMRpro

Apparently mesh is divided into 2 categories.. absorbable and non absorbable, both have terrible side effects.. The surgeon sold it to me saying it was a new material that blended in with the tissue and promoted tissue growth.. Something like that..

I Remerber about a year later I went to get a pap smear and the gyno asking me what material the surgeon had used.. He said it was very well done... Haha

I'm going to ask which mesh they used at the department as the surgeon has since retired.. OH will come in handy for this.. 😂

Kathy does your group link to the women having similar problems with breast implants? They are having a big issue with immune system problems which they claim is related to the implants. Xxxx

Hello Linda - I'm not too sure whether the Sling the Mesh group covers the problems with PIP Breast Implants - but I'm sure I have seen some posts and links on the site.

I'm sure you could do a search on their page or write to one of the admins and ask - they are a great group and will at the least provide you with some links to useful sites.

Sorry, Linda I'd do if for you if I felt a bit brighter - but just having little short lasting bursts of energy at the moment! Best to you xxx

Pip I wouldn’t dream of asking you darling. I know the fatigue. I feel a lot will continue to emerge about all the sh*t they shove into women’s bodies. Here’s a hug xxxxx

This has been a 'big deal' here in OZ so you may be interested in this from a recent news report from our national broadcaster the ABC:

'A scathing report into transvaginal mesh implants has recommended the devices "should only be used as a last resort" and found some women were not properly informed about potentially serious side effects.

The Senate Community Affairs References Inquiry began investigating the pelvic implants after hundreds of Australian women complained of serious and debilitating side effects. ... It's easier to track faulty car parts than medical devices ...

The report recommends:

setting up a national register to track all implants

better education for both doctors and patients

more surgical training so women can get the devices removed

establishing specialist counselling programs to assist women who have sustained injuries

introducing mandatory reporting of adverse events by medical practitioners

... the committee estimated between 10,000 to 15,000 women may have suffered side effects from mesh devices.

The committee's chair, Rachel Siewert, said many of the women who received mesh suffered for a long time. They were ignored and treated appallingly," she said. "I hope we never have another inquiry where we see such suffering from the witnesses."

The Senate inquiry comes after hundreds of Australian women recounted how the devices left them in chronic, debilitating pain, unable to have sex and with recurring infections.

Many told the ABC they felt they had not been listened to by their doctors and were told the mesh could not be the reason for their ill health. But with growing public outrage, in November 2017 health authorities banned controversial vaginal mesh implants for use in pelvic organ prolapse.'

ABC News Report 28 Mar 2018.

Daisychain12
Daisychain12
in reply to Rimmy

Rimmy darling I comment above about breast implants and immune system damage. It’s terrifying to me. Women have been through so much and only after the damage is done THEN find out the risks. 😭😭😭😭😭

Gaijin it makes me cry. Germaine Greer said that “ women make the best guinea pigs because they clean their own cages”. 😭😭😭. Please educate yourself always and look after your precious self xxxx

Fwiw I don’t have a mesh implant. I have PMR.

Now, thinking back, Right after having the implant, I developed some sort of wheat or gluten intolerance which I thought was due to overeating wheat germ and bran. I had been told after the surgery that I should be on a fiber rich diet. But now I understand it could be due to the mesh. I never, in a million years would have connected any of symptoms with the mesh

Daisychain12
Daisychain12
in reply to Gaijin

We just don’t know the implications so we. Trusting little lambs to the slaughter. Xx

the latest is that the Australian government has today issued an apology to 1000's of Australian women - 'acknowledging decades of "agony and pain". If you check the BBC has also raised this in a recent news report online.

Pipalina
Pipalina
in reply to Rimmy

Hello Rimmy - I read this apology by your Health Minister this morning...it's a start but very much more still needs to be done both in Australia & the UK. Best wishes to you - Kathy

Rimmy
Rimmy
in reply to Pipalina

Agree absolutely - what a terrible assault on a woman's body - it will take MUCH more than apologies for this appalling mistreatment to so many women !!

Daisychain12
Daisychain12
in reply to Rimmy

Rimmy it makes my blood boil. My friends life has been shattered by this sh*t. I have been told by a professor that breast implants recipients are showing many auto immune illnesses as the years go on. Yet still they stuff them into women!!!!!

You may also like...