Vulval Pain Society

Interested in taking part in s*xual pain research?

The University of Oxford want to hear about people's experience of s*xual pain conditions. This research will involve filling in an online questionnaire about your pain symptoms and how you feel about your body. This may help them find better treatment options.

They are looking for two groups of people:

- Individuals who have a diagnosis of vaginismus/dyspareunia/vulvodynia/vestibulodynia with ongoing symptoms such as unexplained pain before, during, and/or after s*x in the v***al/va**nal area

OR

- Individuals who have never received such a diagnosis and have never experienced these types of pain

In order to take part, you need to:

- have a va**na from birth
- not be pregnant or postpartum
- not have other medical conditions that can also cause s*xual pain

If any questions, please email researcher Natascha Niekamp at [email protected]

Scan the QR code in the flyer to access the survey, or go to https://forms.office.com/e/Wr81SXmLdL

***alpain

❓How long do you have to wait to get a GP appointment? COMMENT BELOW

Based on Athina Lountzi's recent study we know the average time to diagnosis for a v***al pain condition such as vulvodynia is around 2 years. And that's only for the percentage of people who continue to pursue for a diagnosis. 

We're wondering whether the wait time to initially see a GP is also off-putting in seeking help in the first place. 

WHAT'S YOUR EXPERIENCE? We want to hear from everyone, whether you experience v***al pain or not, so we can get a wider picture. Let us know what the average wait time for an appointment is at your surgery in the comments below. 👇🏽

If you or your partner has:

1. lived with ge***al pain for longer than 6 months PLUS

2. been together for more than 6 months (hetero or non- hetero relationship)

please consider completing these surveys:

• 30-35min if you live with ge***al pain. 

• 25 minutes for your partner.

See the poster for more details. You can scan the QR code or use this link to complete surveys: https://rb.gy/6r1soh

If you have any questions or would like to know more details concerning the study, please feel free to contact the responsible researcher, PhD candidate Lorenza Annibale, via her LinkedIn profile or email at [email protected]

***alpain

Excellent step-by-step guide here. If you have a v***a ***a

It's Cervical Cancer Prevention Week and we know if you live with any kind of v***al pain then even the thought of cervical screening can be tough.

Whilst we can't promise that it can be completely comfortable, our free Smears Without Tears guide can help you prepare and make your visit easier.

You will find the link to our free guide in the first comment.

**nalatrophy

If you're aged 18-25 and live with v***al pain or another pain that persists you may choose to take part in this survey.

Researchers from the University of Ottawa are looking for people aged 18-25 living with chronic pain who are in a romantic relationship to take part in a study exploring how pain impacts relationships. To learn more, visit: bit.ly/3M4YaJO or email [email protected]

Here is the information poster for Tori Ford's recurrent thrush research and her contact details.

If you missed our Livestream with Tori discussing this important study and how you may help, you can watch here: https://fb.me/e/y7j1x65r1

SURVEY - Words Matter: Patient Experiences While Seeking Diagnosis for Chronic Pelvic, Vulvar, and/or Vaginal Pain Conditions.

Jen Romanello, a medical student collaborating with Rachel Rubin, has created a 20minute confidential research survey on people's experiences while seeking diagnosis for pelvic, v***ar, and va**nal pain conditions.

The anonymous data is to benefit people with chronic pelvic, v***ar, and va**nal pain in the future, by demonstrating the importance of validating people's reports of pain, and helping to change the conversation around these conditions.

The aim is to submit a formal manuscript of findings to a medical journal in the autumn.

Survey link: https://redcap.rush.edu/redcap/surveys/ Required access code: 9KTEFY93K

Description/contact info/eligibility criteria: https://www.rush.edu/clinical-trials/words-matter-patient-experiences-while-seeking-diagnosis-pelvic-v***ar-andor

Words Matter: Patient Experiences While Seeking Diagnosis for Pelvic, Vulvar and/or Vaginal Pain Conditions | Rush System Storytelling mediums have highlighted patients who report their pain being dismissed and normalized when seeking diagnosis and treatment for chronic pelvic, v***ar and/or va**nal pain (CPVVP) conditions. The prevalence of chronic pelvic pain is between 5.7% and 26.6%, according to a systematic revie...

Hello, we are sharing this information on behalf of the Tayside Clinical Trials Unit, Tayside Medical Science Centre (TASC), School of Medicine, University of Dundee.

"The Alleviate project is creating a data hub for pain research. We are looking for people in the UK living with any type of pain or a carer of someone with pain, and who are interested to learn more about the project to join our online pain community. You can sign up to our email newsletters and learn about involvement opportunities here: http://eepurl.com/hQjfO9

More information can be found here:

https://www.hdruk.ac.uk/helping-with-health-data/health-data-research-hubs/alleviate/

"Women across the UK will benefit from improved menopause support and care as government ministers and senior clinicians from across all 4 nations will come together today for the inaugural meeting of the UK Menopause Taskforce."

Please see link in the first comment below.

Nations unite to tackle menopause taskforce Ministers and senior clinicians from across all 4 nations will come together today for the inaugural meeting of the UK Menopause Taskforce.

If you'd perhaps like participate, please read further. It's not our study, but we are sharing.

We are sharing this study. Please see first comment below for more detailed information.

This is part of the email that we received: "I am conducting an empirical project as part of my Doctorate in Clinical Psychology at King’s College London (IoPPN). My project aims to explore the role of stigma with depression and pain-related disability in people with chronic pain. We also want to explore the role of other relevant variables (such as loneliness and invalidation, and whether these factors differ with different pain conditions).

To do this, I have created a short online questionnaire, which takes around 20 minutes to complete, and is open to any UK residents (18+) who have been experiencing non-cancer pain for at least three months. All respondents information is anonymous and confidential, and everyone has the chance to enter a prize draw for one of ten £25 online vouchers.

http://tinyurl.com/wk5wszf6

I have attached the information sheet [*see in first comment below, VPS*] ....., and all potential respondents can contact me with questions. This project has been reviewed by the King’s College London Research Ethics Committee (Ref: HR/DP-21/22-24979), and I am supervised by Dr Whitney Scott and Dr Matteo Cella.

Kind Regards,

Lauren Hickling"

We had another fantastic email hit our inbox today, with an offer to run a half marathon in support of the Vulval Pain Society! Thank you sooooo much!

Please do support the wonderful Beth if you can. Thank you.

https://www.gofundme.com/f/beths-half-marathon-fundraiser-for-vps

The Vulval Pain Society - The Vulval Pain Society UK charity the Vulval Pain Society provides advice and resources for people living with v***al pain, families, healthcare providers and the wider public.

We had the most awesome message today, please see link to this fabulous fundraiser in the first comment below.

” I live with a rare condition known as Vulvodynia and potentially another rare condition of Interstitial Cystitis (awaiting diagnosis for this one). Both are painful conditions that vary from person to person and affect people daily. I will be doing Januhairy for the whole month of January, which will involve not cutting or shaving or waxing any of my body hair, to help raise awareness of these conditions that need more research and publicity."

For more info or if you can donate whatever small amount you can, follow the link in the first comment. Thank you (Team VPS are doing a happy dance)!

"What to expect
Face to face meetings are temporarily suspended due to the Corona virus, the room in the museum is not currently available, so we are meeting using Zoom. We meet on the third Saturday of the month.

We are having our next Zoom meeting in January 2022, on Saturday the 15th ofJanuary at 10.30.

Please email [email protected] to join the mailing list and then you will receive the invitation to join the Zoom meeting by email a few days before the meeting. "

https://sites.google.com/view/bristolvhsg/meetings

Bristol Vulval Health Support Group - Meetings What to expect Face to face meetings are temporarily suspended due to the Corona virus, the room in the museum is not currently available, so we are meeting using Zoom. We meet on the third Saturday of the month. We are having our next Zoom meeting in January 2022, on Saturday the 15th ofJanuary

It is with great sadness that we must announce that the Vulval Pain Society Conference on the 19 February 2022 has been cancelled. There is still a huge amount of uncertainty and the possibility of last minute changes are very real, so the risks are too great for us to proceed with the meeting. We appreciate your support and understanding, this has not been an easy decision to make and we look forward to seeing you soon face-to-face.

Many thanks

The VPS Management team

Thank you to everyone who tuned in, watched, shared and participated in our social media lives during 2021. Link to our YouTube channel in the comments section below.