Endometriosis – the crisis of female gender
What is Endometriosis?
Based on personal experience I would like to present you with my own terminology; I tend to call this condition a mutation, as it affects the functionality of the female reproductive organs, which are nature’s most precious gift, however for women with endometriosis it is the worst enemy. The cells that grow and shed from uterus each month during menstrual cycle begin to grow in other areas of the body. The tissue can become inflamed and bleed, irritating the organs and the cells around them. The inflammatory nature of endometriosis causes imbalance in the immune system. Your body seems to turn into self destructive mode.
When I was diagnosed with Endometriosis around 5 years ago I could not simply accept the fact that this condition is a big mystery in the medical world. Trying to make sense of it I decided to research the topic further.
Let me present you with what I learned in the last few years, and also what I have been doing with my discoveries so far.
An estimated number of women affected by this condition at present is 10% globally (around 180 million). However, an International Journal of Obstetrics and Gynaecology, April 2017, Volume 125, issue 1, p 63 in an article Epidemiology of Endometriosis: a large population-based database study from a healthcare provider with 2 million members says ` Endometriosis may remain undiagnosed in the general population, including among symptomatic as well as asymptomatic women`…`Additionally, some patients would not have been recognised, so that the true incidence may be somewhat higher`. In my opinion the number of women affected by endometriosis is definitely higher that 10%. To get full diagnosis woman needs to be referred for a keyhole surgery. It’s only by visual examination of women’s reproductive organs when Endometriosis can be found. Therefore, there are limitations when it comes to women being referred for this procedure, mainly due to the lack of funds and lack of knowledge amongst the health care professionals as well as limited treatment options.
Endometriosis has been around for over 2 decades now and touches women of different age groups and backgrounds worldwide therefore, it meets all of the criteria necessary to start an appropriate research. There hasn’t been any official one done so far…
Endometriosis and dangerous Dioxins.
When I began my research in 2016 I quickly learned about dioxins as being the possible cause of Endometriosis. Dioxins induce a wide spectrum of toxic responses in experimental animals including reproductive, developmental and immunologic toxicities, as well as carcinogenicity. According to World Health Organization (WHO) ` dioxins are highly toxic and can cause reproductive and developmental problems, damage to immune system, interfere with hormones and also cause cancer`. Who also says that the possibility by consumers to reduce their own exposure is somewhat limited `. Dioxins and other chemical substances have been found in sanitary pads, tampons, diapers and all the sanitary products that during manufacturing process had been bleached with chlorine. The only reason for bleaching cotton and other materials is nothing else but white colour…
An independent research done in the 90s By Endometriosis Organization in USA suggests that Endometriosis could be caused by dioxins and other chemical substances found in sanitary pads and tampons. The research took 10 years and found that 79% of a group of monkeys developed endometriosis or/and cervical cancer after exposure to dioxins. In addition, the dioxins exposed monkeys showed immune abnormalities similar to those observed in women with Endometriosis. The occurrence of endometriosis and the cancer of the womb has increased in the last 20-30 years and in particular, Endometriosis is on the increase in the young.
Most researches have focused on the importance of the effects of dioxins on human from the environment (soil, water, atmosphere, etc.). Sanitary products, including diapers, sanitary pads and tampons, are one of the most wearable and closest products to human life from the begin.
At this point of my research I decided to try and change something. I prepared a petition along with main aims. The public’s knowledge on dioxins and other chemical substances is close to none. The monitoring of those substances should be extended and publicly disclose all the contaminants we might find in women’s hygiene products.
My work with local MP.
With petition ready and main aims established in March 2018 I contacted my local MP Hywel Williams. I decided to contact him after I saw his speech in British parliament when he introduced himself as the citizen of the world. I am not politically oriented and it was enough to consider him open minded.
Here are the results of our work so far;
- April 20th 2018- local AM on my behalf contacts Cabinet Secretary for Health and Social Service regarding the possible link between endometriosis and chemicals in female hygiene products.
- May 16th 2018 – I receive response from AM with an attachment letter from Cabinet Secretary for Health and Social Service which states that `Health and Care Research Wales confirm that there are no specific studies addressing the cause of endometriosis and possible links to female hygiene products.` It also confirms that this issue has not been considered by the Welsh Government. Further on it says that `researchers with proposals for high quality research into the condition are eligible to apply to a wide range of research programmes.` Perhaps this is something that Universities could get involved in?
- 12th October 2018 I receive Written Statement by The Welsh Government on Publication of the Endometriosis Task and Finish Group report by Vaughan Gething. The report describes the lack of understanding of Endometriosis among some health professionals and how current provision fails to meet the level of need. This causes delays in diagnosis and sub-optimal clinical care on some occasions, with a consequent impact on the quality of life of users of these services. It leaves me with no hope in the current system . That is why I call for an attention to this topic. At the moment a woman, if lucky and properly diagnosed receives some kind of a relief in physical pain, either by painkillers, hormonal treatment or surgery. First one is as dangerous as second one. For 10% of women in the UK alone is not enough at all. Actually , it’s putting us at risk of addiction, organ failures, serious consequences in regards to operations. Cancer patients have chemotherapy as a choice in treatment which gives them hope. Chemotherapy was discovered through research. There is no hope treatment for Endometriosis as there is no research involved. Is 10% of population group not enough to get enough attention?!
- 8th February 2019 I receive an email from MP Hywel Williams with an attachment letter from the UK Government’s Department of Health and Social Care. The letter states as follows `Public Health England, the Government Agency responsible for protecting and to improve the nation’s health and wellbeing, is not specifically reviewing the health risks of chemicals in feminine hygiene products.` Further on, the Department states that the body assessing it is at the European level and is called the European Chemicals Agency (ECHA). ECHA is not looking into a subject but `will monitor the evidence as it becomes available.` How can the evidence become available when there is no Government body even on the European level that looks into this important matter. It’s women’s lives we are talking about here! It’s women’s fertility being taken away by Endometriosis! It’s women’s right to fair treatment! It’s women’s right to dignity! And finally women’s right to hope!!!! And hope for the future of our planet, as it affects around 10% women globally and often makes women infertile! Around 60% of infertility is caused by Endometriosis. Department of Health and Social Service further on in it’s letter refers me to Department for Business, Energy and Industrial Strategy (BEIS) as this department has overall policy responsibility regarding consumer products. At this stage and with hope to finally get some constructive answers MP Hywel Williams on my behalf contact BEIS.
- 30th April 2019 I receive an email from MP Hywel Williams with an attachment letter from BEIS. Their response runs as follows ` The European Chemicals Agency (ECHA) states that currently the composition, manufacture and use of feminine hygiene products are not governed by specific regulations, but are subject to horizontal legislation, including the EU Product Safety Directive (GPSD). The GPSD states that only products currently considered safe can be placed on the market and that producers are responsible for their safety.` At this stage we haven’t contacted GSPD. It seems to me like there is nobody responsible in the end of the day… There is no awareness in regards to the danger that dioxins cause. What type of Government’s body will take this responsibility? It cannot be down to manufacturers to hold the full responsibility. None of the Departments in charge we contacted are responsible for providing manufacturers with safety measures when it comes to hazardous chemicals in their products as there is none put in place. How can they apply safety measures when there is no awareness, not mentioning enough attention?! Catch 22 and sloppy shoulders combined!
- 25th October Meeting MP H.Williams. During the meeting we discussed the above report and progress made so far. The outcome of the meeting was that MP H.Williams will contact EU Chemical Agency (ECHA). This is to find out what type of safety measures they follow and what are the standards and regulations ECHA applies. It will get more complicated after UK leaves the EU see the linkhttps://www.gov.uk/government/publications/regulating-chemicals-reach-if-theres-no-brexit-deal/regulating-chemicals-reach-if-theres-no-brexit-deal
- November 2019 MP H.W contacts Jill Evans MEP to look into these matters from an EU perspective
- 11th January 2020 – Please see below and attached some information we have received yesterday from the office of Jill Evans MEP who’s a member of the European Parliament for Wales:`The issue of hazardous substances in female hygiene products was raised by several NOGs in the context of the recent adoption of the directive on single use plastic items`. See letter sent by NGOs in link 1 below. Given the rationale of the Directives (to address most littered items found on beaches), the Council refused to accept specific provisions with regard to “no hazardous substances “ in female hygiene products in the Directive. All that they could achieve is the following recital (see photo 1).
(19) The presence of hazardous chemical substances in sanitary towels, tampons and tampon applicators should be avoided in the interest of women’s health. In the framework of the restrictions process under Regulation (EC) No 1907/2006, it is appropriate for the Commission to assess further restrictions on such substances.
Further on in her response Jill Evans MEP presents us with some new facts:
Bis-phenol A as well as phthalates have been linked to Endometriosis, see link 2. Other chemicals can also be relevant. A number of phthalates have been restricted under REACH, and this restriction will also apply to female hygiene products. Certain uses of Bio-phenol A are subject to the authorisation procedure`.
Our next steps of action are:
We will ask ECHA to which extent this will address their use in female hygiene products.
Also, we will ask the Commission whether they have taken any action in light of Recital 19 of the SUP-Directive ( link 1)
Bisphenol A and Phthalates and Endometriosis, The ENDO Study
22/01/2020 Two days ago I received an email from MP`s office with the additional responses from the ECHA European Chemical Agency and the European Commission (COM). Apparently,`there are no specific regulations governing the composition, manufacture or use of feminine hygiene products. ANSES recommends establishing a more restrictive regulatory framework at European level to limit the presence of these chemicals`. `COM explored the interest for an art 68(2) restriction for CMRs in hygiene articles. Several Member States (DK, FR, SE, BE, AT) have taken or planned some actions . MSCAs were invited to share the information via RiME+ bulletin, if desired.
As a general point for the use of art 68(2) it was proposed to use as a starting point a ban of all harmonised CMRs in consumer articles and call industry to propose and justify exemptions rather than trying to identify upfront the relevant CMRs used as was done in the textiles case. It was suggested that the future 68(2) work on feminine hygiene products could start with all Annex VI CMRs, with exemptions based on information provided by Industry. Some ideas for further article types were personal care (or could this be actually covering also hygiene products?), flooring, carpets. It was also suggested to analyse the learnings from the 68(2) textile case to identify improvement possibilities and to compare to the article 69 process. NL reiterated their preference for the art 69 procedure. However, further on in the email it says that `The Commission itself is not taking any initiative on this issue`. `Indeed, no actions under REACH from COM as some Member States (France, Sweden) told us that they are working on it`.
- There are no specific regulations governing the composition, manufacture or use of feminine hygiene products.
- The Commission itself is not taking any initiative on this issue.
- No actions under REACH from Commission.
- Report published in Reproductive Toxicology, Volume 84, March 2019, Pages 114-121 suggests that `Sanitary pads and diapers contain higher phthalate contents than those in common commercial plastic products.`
- Alexandra Scranton—director of Science and Research for Women’s Voices for the Earth, which focuses on women’s voices and roles in eliminating the toxic chemicals from products— pointed out “major differences between different brands” when it comes to the levels of the compounds.
- Sanitary products falling through regulatory cracks and an inadequate societal focus on women’s reproductive health. Sanitary pads and diapers are made of synthetic plastic materials that are released while being used. This is very concerning given the contact with reproductive organs. Over a lifetime a woman goes through 520 menstrual cycles (four decades) and around 20.000 sanitary products. That’s chronic exposure!
- Sanitary products, including diapers, sanitary pads and tampons, are one of the most wearable and closest products to human life from the begin. And yet those products are not considered as medical devices, therefore are not specifically regulated!
- In 2017 more than 15,000 women complained and signed onto a class action lawsuit claiming harm from menstrual pads by the company Lillian. The pads were removed from the market. Women alleged rashes, infections, irregular periods and bad cramping.
- A main issue for women’s menstrual products, much like diapers, is the lack of disclosure of ingredients. Also, limited industry studies often don’t take into account chemicals’ volatility and only look at potential exposure from the top layer of pads.
- `The lack of research and conversation around the health impacts of menstrual products is the historical and cultural taboo in talking about the vagina.` Laura Strausfeld, co-founder of Period Equity.
- It’s time authorities start looking at what they haven’t been looking at! Companies are regularly innovating new products to make them more absorbent and flagrantly using materials and new synthetic plastics that we need to be concerned about!
I feel like something must be done to break this hopeless pattern. I know that together we can get stronger. I believe this story, my story, your story our story is being written as we go, and I think it’s time we break this circle of ignorance. Women around the world have the right to know if conditions like cervical cancer, ovarian cancer, endometriosis, infertility may be linked to female’s hygiene products. We should ask designated authorities to research these products and help ensure they are safe for women. Through this valuable research we should protect the health of women everywhere in the world.
This is how Endometriosis affects us.
We live in a lot of pain, our internal organs gradually become dysfunctional, we are very often infertile, we struggle financially, physically, mentally, we are aware there is no cure at the moment, we loose our jobs, partners, dignity, we feel like we are being experimented on medically, we are approximately 30 % more likely to get cancer of numerous types, 70% more likely to get heart attack and highly likely to experience different organ failures, we go through numerous surgical procedures ( I have been through 3 in the last 4 years), we do not find comfort in the current system as it fails when it comes to provide us with care, we feel like our bodies have been violated in many ways and we experience suicidal thoughts. There is around 160 suicides related to endometriosis a year in UK alone.
We have to remain strong in order to survive.
~Logo by Greg Pawelski
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