Tag: endometriosis

Letters 25th November 2020. RE Flu.

So, today I got a letter. Like the recent text messages, it tells me that I need to have my flu vaccine. It tells me that it is my responsibility to get it because of covid19…blah, blah, blah.

Good stuff you may think. I may add that I think vaccines, overall, are a good thing.

However, I am auto-immune deficient because of a foreign body reaction to polypropylene which was placed in my pelvic area during a hysterectomy for Endometriosis. I had my flu vaccine last year as I have COPD and Ehlers Danlos.

I didn’t know last year, that people who are immune compromised shouldn’t be offered the new adjuvanted flu vaccine and, it seems, neither did my doctor and I became very ill with flu over Christmas 2019. Two things –

  1. I shouldn’t have been offered this particular flu vaccine and should have had the normal one.
  2. My reaction to the new adjuvanted vaccine must not have been picked up by the system.

I called the GP. I spent three whole minutes listening to their automatic message telling me to go to the website and do the business online. Whilst listening I did try their online consultation but it is not possible to turn off the tracking cookies so my PC says no.

Anyway, I get to speak to the receptionist and explain I need a COPD check and to talk about the flu vaccine I keep being asked to have. A doctor calls me within the hour which is amazing as I just waited ten days for telephone consultation over my sore rectum.

We speak for around fifteen minutes. She checks my records, see the novel virus diagnosis and logged visits to myself last year after my flu vaccine. She has no problem checking the box which says that I had a reaction and not to be invited for it again. Brilliant stuff.

Having read the recent warnings from the American drug regulators I am wondering if the UK will also issue a similar warning. It is not suitable for everyone. Vaccines are not a one treatment for all and should be used on patients able to cope physically.

As always, thank you for your time.

Endometriosis. Where is the Research? (Article)

At thirty five years old, the surgeons removed my womb because of Endometriosis, they did this by a surgical operation called a Hysterectomy. The theory being that once the womb was removed the endometrial tissue would no longer persist.

Fifteen years later, the tissue which is only supposed to grow inside the womb continues to grow around my other organs regardless of the absence of the womb. This is confusing. So, the operation did not stop the Endometriosis. I have been in and out of surgery once or twice a year, every year, since the hysterectomy.

My predicament started with the diagnoses of Endometriosis – diagnosed by camera inside the abdomen in Plymouth when I was twenty years old. The doctors explained to me that Endometriosis was a rare condition but not sinister in any way, but very painful. I felt reassured by what they said, it was an explanation.

However, from the first time of having it cut away by surgery, it has confused me – the findings of the surgeons rarely fitting with my locations of the pain. A concern only to me as I often voiced my confusion with my many different doctors. Not one offered me an explanation of this fact.

Looking into the causes of Endometriosis are even stranger. Rarely the claims about Endometriosis appear to be based on any research. I mean I cannot find any real scientific research. There are plenty of stories and advice. There is one terrible piece written by someone from Yale university and there are fantastical claims regarding genetics but no actual research.

Some claims are quite harmful, such as every woman has Endometriosis just some women feel pain with it. One paper even states that there is medical evidence to say that having sex and using tampons can protect against endometriosis. Another suggests it is genetic or starts because of a trauma. There is no medical evidence as there has been no research.

For myself it’s rather strange as my sister has Endometriosis too. Only, we are not blood related, different biological parents. We are completely different in looks and life style now but we were raised essentially the same. One thing we have in common is our choice to use tampons from the beginning – despite a warning by our mother.

Both my sister and I read the packet, as most females do – as long as we changed the tampon regularly we thought there was no risk of Toxic Shock Syndrome or injury to ourselves. We wanted the freedom shown to us on the television adverts, we did not want bulky sanitary protection. It was the 1980s, we wanted sleek, invisible protection – maybe ride some bikes and do some swimming.

The packets were informative on how to put the tampon in..but there was no mention of the bacteria, streptococcus (strep), or that there is a continual risk of the fibres causing an infection which could break down our immune systems and make us prone to pelvic diseases such as Endometriosis or Pelvic Inflammatory Disease. These fibres which cling to the vagina walls after removal of the tampons.

There was definitely no mention of the chemicals being able to be absorbed faster through the vaginal wall than in the stomach. But worse of all, the leaflets missed out completely that they were not obligated to tell us which dangerous chemicals they had placed within the tampons – and this stays the same to this day.

I’d like to see an improvement in the way research is done, information should be gathered from sufferer rather than collected from medical records. Our medical professionals in the UK often do no followup so records are incomplete. I have this disease but do not have any of the risk factors stated on the health pages.

I’d like to know why hormone tests or endocrine tests are not done when Endometriosis is suspected in the UK? Surgery is the ‘go to’ but the surgical treatment doesn’t stop the endometrial tissue growing again. Would this be because the gland is broken? I’m not a medical person but I’ve got a lot of experience of Endometriosis and how it is treated in the UK is confusing.

Also, to this date, to my knowledge, there has never been a controlled investigation into a possible link between sanitary protection and pelvic complaints such as Endometriosis. I feel this is more than just an oversight, this is a disregard for health in general and should be addressed.

I’m reminded by recent medical advice to not place cotton buds in the ear – as the ear is a self cleaning organ damaged by the activity of cotton bud cleaning. Surely the vagina is deserving of the same in depth research and advice? After all, the vagina is a self cleaning organ that women are putting cotton into.

Sanitary protection companies could sponsor this research themselves to ensure they supply a product which is completely safe and its users are properly informed of any risk. After all, sanitary protection is classed as medical device so it shouldn’t it be proven to help women rather than be any kind of risk to their health? The cost to us as sufferers and to the NHS budget can not be underestimated.

Samantha Harris is a writer based in Watford, Hertfordshire, England. UK.

https://www.https://www.quora.com/Should-I-stop-cleaning-my-ears-with-Q-tipsspeakendo.com/about-endometriosis/causes

https://brandfailures.blogspot.com/2006/12/brand-pr-failures-rely-tampons.html

https://yourdaye.com/vitals/womens-health/what-is-tampon-fibre-loss/

https://www.quora.com/Should-I-stop-cleaning-my-ears-with-Q-tips

Take care of yourself and pass on the advice…people can take it or leave it.