National Endometriosis Survivors Support
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17/11/2023
Cysters presents: Marginalised and Menopausal "Cysters Presents: Marginalised and Menopausal Conference" Join us on February 3rd in Birmingham for a groundbreaking event on Menopause!
02/02/2022
Exciting news we’ve secured another UK parliament debate on endometriosis in the workplace which will take place next week 🙂. This is Wednesday 9th February 2022. I will share the link for parliamentary TV 🙂.
Morning All,
Myself and Leeds City Council are involved in the Worldwide Endometriosis March. March is awareness month. We would have been doing a legal March around the city which was authorised by the police and the council. However, we’ve had to move this to virtual for a 3rd year running unfortunately.
We need to create a video for the UK section of the March for Leeds to represent our city and show our culture.
We are a voluntary support group for people with endometriosis. I was wondering if any patients wanted to be involved or anyone who has loved ones with the disease.
Didn’t want anyone to not know it was happening. If you know anyone in the city with endometriosis let them know.
It’s estimated that around 20,000 people in Leeds have the disease. It’s really important people know about endometriosis.
Those afflicted with endometriosis can face a lifetime of severe disability & symptoms throughout the entire body, including incapacitating pain, organ failure, several repeat surgeries, infertility, increased risk for cardiovascular disease, increased risk for certain cancers, immune & endocrinological dysfunction, kidney failure, and damage to multiple organs and tissues, including the bowel, bladder, ureters, diaphragm, muscles, musculoskeletal structures, nerves, ligaments, lungs, and liver. Due to the potential for such widespread, severe chronic symptoms, endometriosis is also one of the leading causes of school absences in teen & pre-teen girls.
https://endomarch.org/
04/01/2022
Did you see us on ITV news talking about womens sleep? How many of you struggle with sleep?
Love this tiktok sound! Some people absolutely hate me because of the space me and my team have for opinions because we are women. People think we should just sit there and shut up. 100% will continue 😂.Me and my team will keep taking space 👏
25/10/2021
This month is domestic abuse awareness month. Domestic abuse isn’t always physical and can be mental as well. Here are some scenarios that aren’t ok!
23/10/2021
is where you are on a urgent surgery list with no timescale with a disease apparently growing on your lung and you are sat debating do I use my house deposit money for surgery 👀 crazy that we are left with this choice. The house deposit that I’d already lost once due to so I am already behind! I’ve had like 3 naps today because can’t stay awake as my endometriosis is on fire! Drs had no choice but to put me back on naproxen which is a risk as I’ve diverticulosis. This is my Saturday night I’m 29 years old! I should be out enjoying my life! Cancelled all my plans!
17/10/2021
So many people in the group are abused in relationships. As they are sometimes vulnerable it’s hard to recognise the signs. Therefore this week I will be spending time raising awareness of the signs.
15/10/2021
RIP Sir David Amess, the man who changed the endometriosis world. The man who fought hard for us all. Who stood in Parliament and gave us a voice. He made so much difference! Thank you! We’ve lost a key member in our team in our fight against endometriosis. You honestly did so much that I don’t even know how we could thank you. He was chair of the endometriosis APPG. Our thoughts are also with who worked very closely with David and they worked together to kick off an endometriosis inquiry. To his closest family and friends our thoughts are with you. A very sad day!
17/12/2020
Catch us today at 2pm on Radio Aire today talking about the Endometriosis inquiry results from the government today 💛
19/10/2020
https://www.bbc.com/news/uk-54513072
Well done everyone involved 💛
Endometriosis care needs urgent improvement, MPs say The condition, which causes severe pain and heavy periods, takes eight years on average to be diagnosed.
Bbc news 10pm
12/09/2020
For all you brave individuals who keep going. Never give up, you inspire me.
Hi im hayley 39 I am self employed Holistic Therapist Based In Balby Doncaster
I actually do self treatments on my self to help with some of the symptoms of endometriosis as well as treating others and helping them as much as possible.
I also offer Aromatherapy Blended products made up by myself to purchase.
During lockdown I took a mindfulness course for myself and to offer others online as well as 1-21 in person.
I do have many clients who I think cause they know I have my own chronic condtion that they feel comfortable with me and talking to me about there own.
Please feel free to share the Business and any business posts
If you wish to do so.
's Harmony
24/08/2020
This member of NESS has written her own book about her journey. Find it on amazon
Hi everyone, I wrote a book on my journey with stage 4 endo and hysterectomy.
https://www.amazon.co.uk/Reclaiming-Feminine-Wisdom-Empowering-Endometriosis-ebook/dp/B07MMYDF8P/ref=sr_1_1?crid=2W8LNAE32JR89&dchild=1&keywords=reclaiming+feminine+wisdom&qid=1598255271&sprefix=Reclaiming+feminine+%2Caps%2C159&sr=8-1
Reclaiming Feminine Wisdom: An Empowering Journey With Endometriosis Reclaiming Feminine Wisdom: An Empowering Journey With Endometriosis eBook: Rossiter, Melanie: Amazon.co.uk: Kindle Store
On Mondays we will be sharing business information of one of our members. This will also include alittle background story about the woman behind the business.
My Names Amy, I’m from Wakefield. I joined Ness when it was first formed as the girls were great and i found them supportive. After attending the first support meet i was asked about been admin. I said yes, and its been amazing to help others aswell. I was told in June '17 it was endo even at following appointment there was still no clear explanation. Thats why im thankful for NESS it helped me understand and it helped me learn about food triggers
Bonjour à tou.te.s ! Une traduction en français suit l’anglais. My name is Anna, I’m 44 and just last year I was diagnosed with DIE that had also impacted my sciatic and crural nerves, causing partial paralysis. My symptoms began at puberty and worsened until I was finally able to find an expert excision surgeon. I can now walk again and feel so much better in general.
I joined the NESS on recommendation from several patients and was very happy with how supportive it is. I’m bilingual in French and English, originally from the West Coast of the States, currently living in Paris, so I joined the admin team to help open up to Francophone patients.
Je m’appelle Anna et j’ai 44 ans. Mon diagnostic d’une endométriose profonde avec atteintes neurologiques date seulement de l’année dernière, alors que mes symptômes ont commencé dès la puberté. J’ai fini par être partiellement paralysée ; une chirurgie experte m’a heureusement rendue la mobilité mais aussi grandement améliore la qualité de vie.
J’ai rejoint le groupe NESS sur recommandation de plusieurs patient.e.s, et j’ai été tout de suite conquise par le soutien et le sérieux du groupe. J’ai décidé de devenir administratrice pour ouvrir le groupe au public francophone - en effet je suis bilingue, étant originaire de la Côte Ouest des US et habitant en France depuis maintenant 20 ans.
16/08/2020
Hi I'm Angela, a mum to a teen who has endometriosis. I joined the group initially to gain more knowledge and support so I could help our daughter, I already knew about endometriosis which made me determined to be heard in our battle but were not part of any support groups at that time and then joined the admin team to be able to help others and offer support if needed as it's a lonely world out there at times. I'm proud to be part of the team and have enjoyed taking part in some of the awareness projects that we've done to raise awareness. The group has come such a long way since I first joined, it has an amazing team behind it and offers so much support to people who suffer and we as a family do not feel alone, knowing there are others out there (sadly) helps alot. Lots of love, Angela # # #
Hi! I’m abi and I’m 16 and from York!
I was diagnosed with endometriosis at 13, after my symptoms started when I was 12! I felt alone because my whole life changed and I felt different from everyone else!
Then I joined NESS, and it was the best thing because it gave me support and guidance when I most needed it! NESS feels like a family as we all support and understand each other. I’m so grateful to be part of an amazing team/group and to watch the group grow to help other women with endometriosis!
Together we can fight this💛💛
Hi, I’m Charlotte, 26 from near Manchester. I wanted to become an admin for NESS because I’ve suffered with rectovaginal/ deep infiltrating endometriosis since I was 9 years old, officially diagnosed at 13. Since then I’ve had 8 surgeries with endometriosis specialists each time and it is now growing back again. Endometriosis has played a big part of my life taking away bits of education, relationships, work, social life and fertility. I am always very open to talk about my experience with surgeries, egg freezing and finance and I also created a blog attached onto my personal Instagram with my whole experience to help other people understand the extent we go through and how it affects someone. I am proud of who we are and what we overcome together! 💛
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