Cumbria Support Group

Upcoming Support Group Sessions

There are no upcoming sessions at this time. Please check back again.

Meet the Support Group Leader(s)

Elaine

My Story:

Although I was diagnosed with endometriosis at the age of 33, I believe I had the disease long before it was confirmed..

My first period was so painful that I remember my mother taking me to the doctors to try and find out what was wrong.

The doctor suggested putting me on the pill.

However, as my mother thought I was too young to go on the pill at the age of 13, I waited until I was 18 and then started taking it as a form of medication to relieve the painful symptoms, which it did.

When I came off the pill around 10 years later, the symptoms of what I now know as endometriois started to appear.

They progressively worsened over the next five years.

I was formally diagnosed with having Stage 4 deep infiltrating endometriosis in Paris in 2009 after having a laparoscopy.

As part of my treatment, I was injected with Decapeptyl SR (triptorelin) which lasted for three months. However, as I reacted very badly to it, I decided not to go ahead with the second injection.

I was also prescribed hormones. However, after taking a few and really not feeling myself, I decided not to take any more.

As I didn’t want to go on the pill again, I decided to just manage the pain by taking prescribed anti-inflammatory tablets and spending a lot of time suffering in bed often after a period of writhing on the floor in pain...

In 2015, when my gynaecologist told me that I would need a resection of the deep lesions I had, probably a bowel resection and very likely a hysterectomy, I was in shock...

After thinking it over for 6 months, I decided against surgery and started researching the condition for myself and seeking alternative ways to managing the pain.

This led me down a path of discovering how dietary and lifestyle changes can help reduce inflammation in the body.

Over the next three years, I found a number of complementary treatments which enabled me to live a life without experiencing pain every day.

I was also diagnosed with Stage 1 adenomyosis in March 2020.

Although, I still take prescribed anti-inflammatory tablets every month (flurbiprofen) and experience vomiting, I’m no longer obsessed with pain management on a daily basis.

I'm reconsidering surgery.

Endometriosis UK Cumbria Support Group

I moved from Paris to Cumbria in 2019.

Realising that there was no support group in the region, I contacted Endometriosis UK at the end of July to ask about the possibility of setting up a support group in the region.

In October 2019, the Endometriosis UK Cumbria Support Group was officially set up.

We held our first meeting in December 2019 in Windermere.

Just a few months down the line, we are beginning to see the makings of a strong, supportive group which is much-needed in the community. This is very encouraging.

The creation of other groups in Cumbria is currently underway in collaboration with women's centres in Barrow, Whitehaven and Carlisle.

You are welcome to attend our meetings if you would like to:

  • share your story in a safe and confidential environment;
  • receive support with any issues you are experiencing;
  • get information to help you deal with any challenges you may face living with the condition;
  • increase your awareness of the disease;
  • provide practical support for someone who has the disease (men are welcome).

RSVP by email and on Facebook.

I look forward to meeting you soon!

About the support group:

Endometriosis UK Cumbria - Inform, Share & Support

Reaching and making a difference to women struggling with the effect endometriosis has on their lives. We aim to:

  • Provide information – We help women who suffer from endometriosis (and also men whose lives that affects) understand the condition through discussion, expert speakers and  publication hand outs.
  • Give support – We create a safe, supportive and confidential environment for women with endometriosis to meet and talk with others who share and understand their situation.
  • Facilitate gender partnerships –  We encourage men and women to work together in this space to end menstrual taboo.
  • Partner with businesses - We encourage local companies to sign up to the Endometriosis Friendly Employer Scheme.
  • Have fun together!

Interview on BBC Radio Cumbria with Emma Cox, CEO of Endometriosis UK and Elaine Rémy, Volunteer Support Group Leader of Endometriosis UK Cumbria (1:17.00 - 1:23:05)

General Session Information:

Our meetings will be held once a month on a Wednesday or Thursday evening.
REGULAR VENUE/MEETING POINT
Lamplighter Dining Rooms (Bar), High Street, Windermere, LA23 1AF, Cumbria
The Bar is a privatised space with a separate entrance, facilities, dining room and bar.
You will be required to purchase your own food and drinks.
Wheelchair access is available a few metres from the entrance to the bar.
https://goo.gl/maps/Q7kpN8dnNR32yqU78
ACCESS BY CAR - Parking
Venue car park and surrounding area
ACCESS BY TRAIN
Windermere Train Station (4-minute walk from venue)
ACCESS BY BUS
Windermere Bus Station (4-minute walk from venue)
6, 505, 508, 516, 541, 555, 597, 599, 755, X8
We also intend on holding meetings in other parts of Cumbria from time to time.

Agenda for launch on 05/12/2019
5.30pm – 6.45pm Optional dinner. Reservation required (CumbriaGroup@endometriosis-uk.org)
7.00pm – 7.30pm Welcome, introductions, about EUK
7.30pm – 8.30pm Endo what? Veena Rao, GP & EUK Trustee
8.30pm – 9.00pm Close & socialising (women only)
A remote access link is available upon request by sending an email to CumbriaGroup@endometriosis-uk.org.