“Meeting other women with endometriosis lessens the isolation that endometriosis can bring with it.”

MY EXPERIENCE

I was diagnosed with endometriosis about 7 years ago, although the symptoms started about 8 years ago. I had cramps that started before my period and got progressively worse. Eventually I was in pain every day to the extent where some days I could not stand up straight or walk properly as the pain was down my legs and up my back. Lying curled up in bed in the fetal position around a hot water bottle became a common way of coping. When I went to my doctor, I was incredibly fortunate as endometriosis was one of the first things she suspected and referred me to a gynecologist for a laparoscopy.

During the laparoscopy some of the endometriosis was removed, but some lesions were close to my kidneys and major blood vessels so those were left alone. The whole diagnosis process took about 1-1.5 years. I know how lucky I am that it was so quick. I had not heard of endometriosis before talks with my doctor, nor had any member of my family. I had to do my own research by consulting the internet.

After my laparoscopy, I was then put on a birth control pill and told to take it continuously with no break in between. I decided to come off the birth control pill not too long ago as I wanted to give my body a break and it hasn’t been too bad. Only recently has some severe pain started coming back one or two days a month.

HOW I MANAGE MY ENDOMETRIOSIS

I’ve always had the mentality that I am in charge of my endometriosis, it is not in charge of me. With that in mind, right from the beginning I took a more holistic and alternative outlook when it came to how I was going to manage it. I found making changes to my diet have made a big difference to my pain levels. I am in pain every day, but as long as I can keep it minimal and relatively under control, I almost forget it’s there some days.

I can get quite tired and my energy can be low, so I really have to watch my schedule and make sure I have plenty of time to just relax and have early nights. I exercise 5-6 days a week, either in the gym or with yoga, which helps with overall health and stress levels, as stress can increase the pain a bit for me.

WHY I BECAME A SUPPORT GROUP LEADER

When I moved to Edinburgh there was not a support group, so it just made sense for me to apply to become a group leader. I have always enjoyed volunteering and also wanted to ensure that I put a positive spin on having Endometriosis.

Meeting other women with endometriosis lessens the isolation that endometriosis can bring with it; there is a mutual understanding of how hard it can be some days. I have watched the women in the group gain confidence in themselves and in talking about endometriosis and I feel this will only benefit the wider issue of awareness and understanding that we need for the cause.

- Sandra

Sandra was the Support Group Leader for the Edinburgh Support Group from 2012 to 2014 – she has since returned to Canada.

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“I think it’s important to remember that you are in control, not the endometriosis.”

My experience of endometriosis

I was first diagnosed in December 2007. I had always had very painful, heavy periods but the pain became constant and so bad that it would make me physically sick or pass out.

I have endometriosis on my uterus, ovaries and bladder. Pain can spread down my legs and into my back also. I have been told that there is no point in any more surgical intervention as this could cause more damage than good.

There does not seem to be a pattern to my pain and it does not correlate with my cycle in anyway. When I was first diagnosed I became extremely tired, even having a shower would leave me in bed for the rest of the day. I was later diagnosed with Chronic Fatigue Syndrome (CFS).

Having both CFS and endometriosis means I am tired most of the time and get light headed, as well as having severe pain. However, my medication has made the pain has go from being constant to intermittent.

I’ve always been really sporty, so when I couldn’t do any sport because I was too exhausted, it was really difficult for me. It took me a while to build up to doing any exercise. I started off gently doing yoga in my room, then joined a gym in 2010 and slowly built it up from there. A year later I joined my local running club. I really enjoyed it and soon moved up from the slowest group. I actually found that running made me less tired and helped me manage the pain more. I managed to do a half marathon in the autumn of 2012.

Running the London Marathon

After seeing my boyfriend complete the London Marathon last year, I decided that I would enter for 2014. Endometriosis and CFS have turned my life upside down. I wanted to raise awareness of them as well as raise money to help other people like me. I was so confused and frustrated when I was first diagnosed – it was through one of the Endometriosis UK support groups that I was able to learn more about endometriosis and feel like I wasn’t so alone.

It took a lot of hard work and discipline to train for the London Marathon. I started training for it nearly a year in advance. I increased my training really slowly. This was really important as with both endometriosis and CFS it’s about pacing and not overdoing it. I made a point of still doing my yoga, which I think really helped. There were many hard days, and there were days when I had to write off running all together.

Throughout the training the thought of actually completing the marathon kept me going. I had tears in my eyes when I crossed the finish line. I couldn’t believe I actually had done it. Completing the marathon was a massive challenge and the biggest achievement I have made in terms of a personal goal and overcoming these conditions. I think it’s important to remember that you are in control, not the endometriosis.

– Louise

Louise completed the London Marathon in just 4 hours 2 minutes and 38 seconds and was the first female Endometriosis UK runner to cross the finish line.

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I’m Rhiannon. I’m 22 and I live in Wales. I’m waiting to be officially diagnosed with endometriosis after many years of pain and frustration.

I have used Endometriosis UK's helpline during moments when I've been really down. I don't have anyone else I can speak to about endometriosis. It's a life line - but its services have been reduced due to funding cuts and the charity is in need of donations.

The helpline was there for me when I needed it most. I don't want this service to disappear. Please help keep the helpline running by donating today.

I’ve been in constant pain and have suffered from fatigue for many years, and often spend many days at a time in bed with pain killers. This has a massive impact on my social life. I can’t go out with friends and sometimes I just feel like I have no one to talk to.

The last time I called the helpline I was feeling very depressed, alone and confused. The lady who I spoke to on the helpline was so kind and genuine. I don't have anyone else I can speak to about endometriosis. That's why I find the Endometriosis UK helpline to be such a lifeline. Being able to speak to someone who is going through and has been through the same type of things as you is a god send!

There's been a cut in the Endometriosis UK helpline hours due to lack of funding. It's the only endometriosis helpline in the country – I would feel incredibly sad and alone if this service did not exist.

The Endometriosis UK helpline was there for me at a very low point in my life and I know that it is vital for loads of other women struggling to live with endometriosis.

I can't even begin to explain how much that call helped me that day. I was in a very bad place, but after I made the call I had a much clearer mind and a new way of looking at the disease.

The Endometriosis UK helpline volunteers are angels and this service cannot disappear.

So please, donate to help support the Endometriosis UK helpline and ensure that the charity can continue to run this fantastic service.

Thanks,

Rhiannon

PS - Please share my story with your family and friends, to let them know how important the helpline is.

Donate today and help us keep listening

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“This debilitating, invisible disease is no longer going to control me and my life.”

MY EXPERIENCE

I was diagnosed with endometriosis in 2004 and have Stage 4 severe endometriosis that affects my womb, ovaries, fallopian tubes and bowels. I also suffer from neuropathic pain.

When I was 15 years old I was put on the contraceptive pill by my GP to try and reduce my pain and heavy periods. However, the continued pain around period time led to regular time off school, then later, university and work. I’ve had 5 laparoscopies and 2 courses of hormone treatments. I’ve tried a variety of medications to help with my pain and symptoms. I see a pain psychologist and an acupuncturist as part of my ongoing treatment.

Endometriosis has a huge impact on my daily life. The pain is constant and I’ve been in daily pain for nearly 3 years. This led to not being able to make plans as I wouldn’t know how I would feel from one day to the next. This has affected my relationships with my partner, family and friends but I’m very lucky that they are all very supportive and understanding. My work has also been affected and although my employers have been supportive they have now commenced ill health proceedings against me and there is a real prospect I may lose my job due to my illness.

HOW I MANAGE MY ENDOMETRIOSIS

After a period of feeling quite low and depressed I knew I had to start getting back some control over my life. I’ve recently completed a chronic pain management course which has helped me learn techniques and strategies to help me deal with the pain. Now I’m able to manage gentle exercises and stretching. Pacing myself, changing my diet and reducing stress have all had a positive effect and I find I am able to see friends and family more often now.

I attend my local Endometriosis UK support group and have found it so beneficial and empowering to meet other women in similar situations and it’s a really supportive environment. Due to the help, support and friendships I’ve made at the support group I was delighted to take the opportunity to co-lead the group and have recently completed my group leader training.

I’ve come to accept that I will be in pain on a daily basis. I try to remain positive as I believe I can tackle pretty much anything endometriosis throws at me if I think positively. I’m a stronger woman and know more about my body and mind due to suffering from endometriosis. I know I will get better and I am getting better! This debilitating, invisible disease is no longer going to control me and my life.

- Lyndsey

Lyndsey was the co-leader for the Endometriosis UK Edinburgh Support Group.

"I was just told I had Stage 4 endometriosis... I wasn’t given any further information even though I had never heard of endometriosis before."

MY EXPERIENCE

I had been on the pill, and later the implant, for some time and had experienced only what I thought was normal period pain. It wasn’t until I decided to take a break from the implant that I experienced my natural cycle in all its glory. Wow… For 2 days a month I suffered with excruciating and debilitating pain. I had to change my rota each month to make sure I was off work when my period was due. I experienced bloating, pain and very heavy periods, along with a change in my bowel movements. My doctor was concerned about my symptoms and booked me in for a scan.

However, before I had my scan I actually collapsed with pain while I was out jogging. I was taken to A&E, given some codeine and then sent home. No further action was taken as I was already booked in for a scan the following week. My scan showed that I had a 10cm cyst on my left ovary. I was put me on a three-month long waiting list for surgery. At this point there was still no mention of endometriosis, but I was told I may lose an ovary.

Following my operation, my surgeon explained he had removed the cyst and managed to keep my ovaries intact. I was just told I had Stage 4 endometriosis... And that was that. I wasn’t given any further information even though I had never heard of endometriosis before.

BECOMING AN ENDOMETRIOSIS UK SUPPORT GROUP LEADER

I wanted to set up a support group because I was disappointed with the lack of information I received about my illness from the health professionals. There was little post diagnosis care offered to me. I took to the internet to look for answers and discovered Endometriosis UK. I thought that there must be lots of other women with this illness and that being a group leader would allow me to bring people together to seek a deeper understanding of the illness.

Meeting other women with endometriosis is vital to coping with the illness. The support and empathy they can provide is a wonderful thing - it can prevent feelings of helplessness. Sometimes we have to push for the type of medical care we deserve and it can be difficult at times. There is a lot of work to be done to raise awareness of the endometriosis and to seek better care, this can only be done if women with endometriosis come together and show how strong we really are.

- Stephanie

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