Endometriosis UK Staffordshire

Morning everyone!

I’m so sorry to say that our meeting at The Plough in Bignall End has to be rearranged as the room has been double-booked. I am about to arrange an online session if I can do so, so that we still have a chance to chat as I know a lot of folk were interested.

Due to the nature of the double-booking, we may need to move our usual meeting day so I’ll have a chat with everyone and possibly put a poll up to see which days suit folk best for in-person meetings.

I’m so sorry for any disappointment - I was so looking forward to seeing you all in person!

Lexi x

• could it be endometriosis? •

Symptoms vary for so many people, but these are just some of the most common symptoms reported for those who live with endometriosis:

• chronic pelvic pain
• painful periods that interfere with your day to day life
• painful bowel movements
• pain when urinating
• pain during or after s*x
• difficulty getting pregnant
• fatigue

If any of this sounds familiar, you’re not alone: an estimated 1 in 10 women are thought to have endometriosis.

If these symptoms resonate with you but you do not have a diagnosis, please speak to your GP to discuss them further; and in the meantime, support groups like ours here in Staffordshire are always here to chat, provide information, and give you space for you to share your experiences.

💛💛💛

March is Endometriosis Action Month, a month dedicated to raising awareness and taking action to drive change for those with the disease.

Endometriosis impacts 1 in 10 women and those assigned female at birth in the UK, however, so many still have not heard of the disease, or do not understand its impact.

That’s why this year, our theme for Endometriosis Action Month is ‘could it be endometriosis?’.

We are focusing on raising vital public awareness to empower those who feel there is something not quite right with their experiences to go to their GP and ask ‘could it be endometriosis?’ and to prompt the question in the mind of healthcare practitioners when a patient is experiencing symptoms too.

We look forward to sharing our work with you this month and beyond.

Find out more about how you can join us in taking action this March at: https://www.endometriosis-uk.org/endometriosis-action-month-2024

Image description: A woman wearing a yellow t-shirt looking at the camera. Text reads 'Could it be endometriosis?' Endometriosis Action Month

*In-Person Meeting*

We’re excited to confirm our in-person meeting in the upstairs meeting room at The Plough Inn, Bignall End! This is on the 12th of March, 6:30pm to 8pm.

As part of awareness month, now more than ever it’s important for us to seek out support of those who are in the same boat, share experiences, and have a chance to chat with those who ‘get it’.

We can’t wait to see you! Please drop us a message or comment below if you have any questions, or to let us know you’re coming!

Get involved this action month!

Info regarding our March meeting coming soon 🙌

Following the launch of our recent video, 'Endometriosis and Surgery', we are pleased to announce that we will be holding a free to attend Q&A webinar event.

In this webinar, chaired by our CEO, Emma Cox, Consultant Gynaecologist Dr Manou Kaur, Gynaecology and Endometriosis Clinical Nurse, Claudia Tye and Support Group Leader Lexi answer your questions about surgery for endometriosis.

This webinar will cover how to prepare for surgery, what to expect form surgery, and tips on recovering well.

Questions can be submitted in the comments below, or upon registration for the session.

This webinar will be recorded and uploaded to our website for those unable to attend live.

Register at: https://www.endometriosis-uk.org/civicrm/event/info?reset=1&id=939

Image description: Yellow text on a red background reads 'Free Webinar, Endometriosis and Surgery Q&A, Wednesday 17th January, 7pm -8pm'

Our next online meeting is the 12th of December at 6:30pm.

Snuggle up in a blanket, grab yourself something warm and cosy to drink, and chat to us about ways to keep yourself feeling as well and content as possible over the festive period.

Drop us a message or leave a comment below to register your interest!

• Join us for our next meeting on the 14th of November! •

Whether you just need some support or need advice, we are here to support you - whatever stage of your endometriosis journey.

Pull up a chair, grab a warm drink, and coy up for our November online meeting 💛

Drop us a message or comment below for the link!

Morning everyone!

Flippin’ ‘eck, its got cold here in Stoke! I swear it was 20 degrees outside not even a week ago 😅

Unfortunately, the usual winter bugs, placement and recently having covid (again!) have all created a super-storm and left me with a grotty chest infection, so I need to take a couple of days to rest. This means I’m having to cancel to tomorrow’s meeting - I’m so, so sorry! I’ve contacted those who asked already, and I’ve taken the post down so there’s no confusion. However, November’s meeting will be going ahead and I’ll post the information for this shortly.

I made sure to wear my EndoUK T-shirt to the doctors 😂 it always gets a few comments and I’ll be dropping them off some more leaflets and business cards too.

Time to snuggle up and catch up on some research for my dissertation. Has anyone else dared to put the heating on yet? Feels like admitting defeat; it’s only October 😂

Lexi xx

Share your experiences in the first Women's Reproductive Health Survey for England.

Delivering on a key commitment in the Women’s Health Strategy, the Women’s Reproductive Health Survey is seeking views from women and those assigned female at birth, living across England on issues including periods, contraception, fertility, pregnancy and the menopause.

Findings from the survey will be used to better understand female reproductive health experiences over time. The vital information gathered will inform current and future government decision-making and health policy.

You can complete the survey here: https://online1.snapsurveys.com/interview/3e9e0d85-378d-40dd-a701-f353e02fbac1

A reminder that our next meeting is on the 12th of September from 6:30 - 8pm!

This month, alongside general support, we'll be talking about intimacy, relationships, and friendships - and how they are impacted by endometriosis.

- What have been your struggles with relationships? Has anything helped you to have the healthy relationships with your friends, family, or partner?
- Do you have any advice you could give to someone starting their journey with this condition?
- When it comes to intimacy and s*x, have you had any challenges, or have some wisdom to pass on that's helped you to maintain this aspect of your life?

Register your interest below, or drop us a message!

Our next meeting is here!

Need some space to talk, share ideas, or just want to listen to others who struggle with endometriosis? Our next online meeting is the 15th of August at 6:30pm!

Drop us a message or comment below to register your interest.

Don’t forget - even if it feels like it at times, you’re not alone in your journey 💛

In need of some support, or just a place to feel heard?

Come join us at our next online support group meeting on the 11th of July at 6:30pm. Drop us a message or comment below for the link!

Whether you just need a supportive ear or are looking for how to seek information and help, we’re here to support you 💛

Our next meeting is on the 23rd of May at 6:30pm - drop us a message or comment below for the link ⌨️ ☕️

A reminder that our helpline and web chat will be closed for the bank holiday weekend and reopened on Tuesday 11th April. ⁠
Opening times are available on our website.⁠
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Our online community forum on HealthUnlocked remains open 24/7 and provides a supportive platform to connect with other people affected by endometriosis. More information is available at: https://www.endometriosis-uk.org/online-community
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If you need support over the bank holiday weekend, you are not alone.⁠
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The Samaritans provide emotional support 24 hours a day. You can call them for free on 116 123 for support with how you are feeling.⁠
The NHS24 on 111 also provides urgent care and advice when your GP is closed, and you can speak to the crisis intervention team.⁠
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Other mental health support services:⁠
Hub of Hope - https://hubofhope.co.uk/
Shout - https://giveusashout.org/
If there is an immediate and urgent risk of harm, please contact the emergency services.

Image description: red text on a yellow background reads, 'support over the bank holiday weekend'

Meet Lexi, one of our support group leaders; her endometriosis journey starts at 14 years old. To her, it's so important that young people know how to advocate for themselves so that the 8-year wait for diagnosis and treatment can be cut.

"I was diagnosed with endometriosis when I was 23, but it started a long time before that. I was 13 when I started my periods, and by 14 I knew that something didn't seem right.

I had really heavy, regular periods. They didn't start super-painfully, but as I got to my GCSE's I was stuck not being able to eat anything but plain potatoes and toast around my period without being sick, was fainting at school, and the pain was becoming more and more apparent.

I first went to the doctor at 16, who told my it was my hormones, that it would settle, and put me on the contraceptive pill. It really didn't suit me so I came off it, but around a year later I was back because I was having pain going to the toilet when I was on my period. I was given a different pill which did help for a while, but by 20 I was spending more of each month in pain than not.

I went to see so many doctors I've lost count - I was fobbed off, told it was 'normal', and sent for many tests including tests for MS because I had pain in my hips and legs. It was a rheumatologist who asked me if I'd seen a gynaecologist, and I cried because by that time I'd done some reading and had a feeling it was endometriosis. To hear someone else say they thought my issues were gynaecological was such a relief, and to be told in my Gynaecology appointment that my symptoms fit with endometriosis and that my pain wasn't in my head was life-changing.

I'm 33 now and 5 surgeries down, and I've been a volunteer with Endometriosis UK for 6 years. My biggest passion is helping younger people recognise what's normal and what isn't when it comes to their period, and how to advocate for themselves so they can get care much sooner than I did."

💛 MARCH SOCIAL WALK 2023 💛

Join us for a gentle leisurely stroll around Cannock Chase, make new friends, and meet others who are riding the same endo storm 🫶🎗

First one of the year, do let us know if you’re coming then you can be directed to a WhatsApp group chat so we can find everyone when we get there. For those who will be driving, parking is free on Marquis Drive.

Family, friends and friendly dogs are all welcome 👪🦮🐕‍🦺 Claire will be there with Alfie at 1pm!

Please wear yellow for group photos if you’re happy to take part in them, sensible walking shoes that you don’t mind getting muddy, plenty of hydration, and any medications you might need along the way.

Would be great if we could get our biggest group yet to get some photos for Endometriosis Action Month! 💛🫶🎗

Action month starts tomorrow! 🙌

Just one day to go until

A huge thank you to those that have taken action already by lobbying their local MP/ MSP/ MS/ MLA, registering to attend an event, taking on a fundraising challenge or sharing their story. Your support continues to help us drive change.

Keep an eye on our social media and website for regular updates on our plans and how you can get involved this Endometriosis Action Month.

Image description: Text on a red and yellow background reads 'One day to go... Endometriosis Action Month, March 2023'

Please fill out the Endometriosis UK Diagnosis Survey - it helps us to see the picture of endo in the UK, and how long those diagnoses are taking 💛 this is information used in the Charity’s awareness and parliamentary work 💛

We want to hear from you 📢

Take part in our diagnosis survey helping to find out how long it takes to get a diagnosis of endometriosis in the UK, and about your experiences during the diagnosis process.

If you've had a diagnosis, if you're going through the diagnosis process or if you have suspected endometriosis, we want to hear from you.

We’ll use the information gathered in this survey in our lobbying and campaigning work to drive down diagnosis time and improve access to care.

Add your voice today at: https://www.surveymonkey.co.uk/r/Diagnosis2023

Image description: Yellow text on a red background reads: 'We want to hear from you: Diagnosis Survey 2023'

Our next support group meeting is on the 7th of February, at the usual time of 6:30pm! Pull up a chair, get cosy, and chat with others in a safe and supportive environment ☕️

Drop us a message or leave us a comment to sign up, or contact us for more information 💛

🙌🙌🙌

📢 We have received the positive news today that the National Institute for Health and Care Excellence (NICE) have agreed to review parts of their guideline on .

📝 This review will include improving diagnosis, surgical management, and surgery where fertility is a priority. NICE has also recognised the need for more research into pain management and mental well-being.

🙌 This is a great step forward and we look forward to working with NICE to ensure improved diagnosis and care.
But we’re not stopping there; we will be reviewing what NICE have said and planning campaigns to bring about further change to support the needs of the endometriosis community.

💛 A huge thank you to everyone that joined us in campaigning for change, your support continues to make a difference to those living with endometriosis.

❗️Meeting alert❗️

Our next meeting is on the 8th of November and we will be joined by two guest speakers:
- Mr. Zeiad El-Gizawy, Endometriosis Specialist at UHNM
- Sam Marsh, Endometriosis Specialist Nurse at UHNM

We will be discussing how to stay as well as we can with endometriosis, including if we are waiting for different treatments, and of course, answering questions you have! If you have a question you'd like to ask, message this to the page or to our group, and we will add this to our list. Please note that our guest speakers can't give personal medical advice, so please keep your questions general.

Register your interest below for the link to the session, and we can't wait to see you there!

Are you free this weekend, and want to support those suffering with endometriosis in the UK? Visit Bear Hut Brownies who are being super-amazing and donating their profits over this weekend to EndometriosisUK as part of our Tea For Endo campaign! 💛

Happy Saturday!

It’s time four our next online meeting 💛

Pull up a chair, snuggle up on the sofa, make yourself a cuppa ☕️ and chat with others who can offer you some support on your journey with endometriosis.

As the dark nights start to draw in, it can be easy to feel more tired, lonely, or feel your mood start to drop - and chronic illness alongside these feelings can make this more challenging. This month we’ll be talking about mood and balance with endometriosis, and share experiences and ideas on how to encourage ourselves and build resilience when times get rougher.

Drop us a message or register your interest below!

Hi all 💛

Our next meeting is here!

Need some support, a chat, or just to listen in along with those who understand or can offer advice?

Drop us a message or comment below to join us on the 27th at 6:30pm.

We are deeply saddened to hear of the death of Her Majesty The Queen, announced this evening, and Endometriosis UK Staffordshire send our condolences to the Royal Family. We wish them peace as they grieve the loss of their mother, grandmother, and great-grandmother - as the nation grieves it’s longest reigning monarch.

Researchers at the University of Edinburgh and the University of Cambridge are conducting a study on visceral pain. To take part in the study or find out more please visit the link or scan the QR code.
To take part in the survey please click on the link https://pain.srcp.hpc.cam.ac.uk/surveys/?s=PWJ49LHRRAKJR7W3

What an absolute powerhouse!

Congratulations John - what a way to round off Walk for Endo!

A HUGE round of applause for and a massive thank you from all of us at Endometriosis UK, words can’t express how grateful we are to John and Sophie. ⁠
⁠
John ran 359km in one go from our offices in London to Liverpool over the weekend, getting roughly 4 hours sleep over 3 days. The challenge was tough and there were many low points but John powered through. ⁠
⁠
John took on this challenge for his wife Sophie, who has suffered from endometriosis for many years. He wanted to raise awareness of the disease. John has raised an incredible £17K so far to support those living with endometriosis. ⁠
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Thank you John!