Ever since Colleen Loughran was a young girl, she hid her legs away from the world, conscious that they looked much bigger in comparison to the rest of her frame.
She poked fun at them among friends but she never thought that there was an underlying cause that impacts more women than many would realise.
For years she has endured endless sleepless nights due to restless legs and a constant heaviness when she walks, as if she had dumbells strapped to her ankles.
Read more: NI woman diagnosed with chronic illness after feeling embarrassed about symptoms
Having sought help from doctors from her teenage years for the severe swelling, the Co Tyrone mum was prescribed fluid tablets without further investigation.
On the advice of a life-long friend and nurse who was concerned at the change in her legs, Colleen went to the doctor asking for a series of blood tests, believing that she could have had an issue with her heart.
At the age of 36, Colleen was finally diagnosed with two conditions, Lipoedema and Lymphoedema. Lipoedema (also spelt Lipedema in the USA), is a chronic condition that makes you accumulate fat below the waist, often giving you hips, buttocks and legs that are out of proportion with your upper body. It can also affect your arms.
Meanwhile, Lymphoedema is a long-term (chronic) condition that causes swelling in the body's tissues. It can affect any part of the body, but usually develops in the arms or legs. It develops when the lymphatic system does not work properly. The lymphatic system is a network of channels and glands throughout the body that helps fight infection and remove excess fluid.
Speaking to Belfast Live having sought out the only known surgical treatment for the condition, which isn't available on the NHS, the hair and beauty salon owner wants to raise awareness for the disease so other women are not suffering in silence.
"I knew all my life that my legs weren’t right but it was no big deal, I got on with it. I always had no visible ankles and no visible knees all my life at school, I wouldn’t have worn socks with a skirt or anything. People would have passed comments at school but I didn’t really care, I just got on with it.
"It’s only since I was diagnosed that I care more now because I look back and think why didn’t I say something? I used to go to the doctor, since I was a teenager because I was always so swollen, my legs would have gone up like balloons, and they just gave me tablets for the fluid.
"I have two different conditions Lipodema and Lymphodema, so it’s not as common to have both conditions. I have the no ankle, no knee but as the day goes on I also get the swelling," said Colleen.
She continued: "My friend had given me a list of things to get checked with my bloods to do with my heart and I went to the GP and she was querying why I wanted them done and I was telling her about the swelling in my legs and she remembered me from when I was pregnant because they were really severe when I was pregnant with the fluid gathering.
"I told the doctor I had been there numerous times and got fluid tablets but no-one ever queried that there might be something else. But that day she looked at them and that was the first time anyone had really examined them and she said they were ‘extremely abnormal’, and I was just taken aback, I was saying 'are you sure they’re not just fat?' And she said 'no Colleen your top half is narrow and your legs are ‘extremely abnormal’, those were her words."
After referral to the Lipoedema clinic in Craigavon, the Pomeroy woman was told that she had both conditions, but the only thing she was offered was compression tights, as no other treatment is available here.
"When I was diagnosed all they give you is compression tights, that’s it, that is all there is available in this country, there is nothing else on the NHS. But since all of this I have learned that there is a girl I’ve met through Instagram and in her local area through the NHS they offer daily lymphatic drainage massage and it’s all about your postcode she said in terms of what treatment you can get, she is in another part of the UK."
Colleen continued: "Looking back now I was in pain but I’ve always been the type of person even if I was in pain I’d never have said, that’s just my nature, I’d have got on with things. But the people who are contacting me now since I put it out on my Instagram, there are people who are really suffering with their mental health and their day to day life because of this condition.
"Every single night in bed I had to put a hot water bottle, every night of the year no matter how hot it was outside, I’d put it on my feet and legs and put them more or less on fire and then I had to put them out of the bed, and put them on the wood of the bed to cool them down and that’s something I always did and I felt it worked I don’t even know if it did or not but I did it every night.
"Or if they had of been really bad I would have put a cold bottle of water and rolled it down my legs. I never slept much either because of my legs. It’s like restless legs in pregnancy but I had that all the time and I was so used to it that I just didn’t think anything of it.
"I would also have had constant heaviness in my legs, like I was carrying dumbells on my ankles."
The only treatment that is offered for the condition is a specialist form of liposuction which isn't generally offered to patients on the NHS. Determined to ensure her condition didn't get worse so she could have some quality of life with her young children, Colleen went to Germany for the operation.
"I told my children I was going on a work trip and I set off on my own. I was an emotional mess, I cried the whole time I was in the airport, I just was emotional leaving the children and my husband and also just knowing I was doing something to resolve the issue I’ve had my whole life."
Admitting she had underestimated the procedure and the recovery, Colleen soon realised it wouldn't be as straightforward as she had hoped and he husband came out to help bring her home.
"The one thing I didn’t do was look into what the surgery actually involved, ignorance was bliss to me at that time I’d rather not know.
"They only did the front of my legs and when I say I could not walk, I have had three c-sections and I would call myself pretty hardy but it was a pain like no other.
"I only had the fronts of my legs done and they removed 8.5 litres of fat from the front of my legs."
According to Lipoedema UK, 78% of women with Lipoedema who took part in Lipoedema UK Big Survey 2014 developed symptoms between the ages of 18-25 but only 7% received a diagnosis at that time. Most took decades to realise they had Lipoedema as they were constantly dismissed by the medical profession and told that the excess fat ‘was their own fault’.
No one knows exactly how many women have lipoedema but as the vast majority of doctors and nurses aren’t trained to recognise lipoedema, many women go their whole lives without obtaining a diagnosis.
Colleen continued: "People think liposuction is cosmetic but this is a disease. I have young girls messaging me saying they are seeing therapists because of how bad it is affecting them. Some have told me they’re going to their doctors who are telling them they’re obese, so if you’re a young girl and you’re being told you're obese and you need to be on a strict diet and exercise but no matter what they do their legs don’t change, it’s not good for their mental health.
"A lot of women are 40 or more before they’re diagnosed and there are women at 65 who are in wheelchairs because of this, it is cruel."
According to the NHS website, "the exact cause of lipoedema is not clear. It's not caused by being overweight – you can be a healthy weight and still get it."
Colleen hopes by speaking out that more women will seek out help if they feel they are suffering from the condition. She also hopes medical professionals are offered more training on identifying and diagnosing the condition.
"This is a disease and it can leave you in a wheelchair. I wasn’t as bad as some, but I’m 37, if I had let this go on I dread to think what I could have ended up like.
"I just think the biggest thing is more doctors need to be aware of this condition and long-term if they diagnose people early it will save the NHS so much money.
"It's cruel that women can't get this treatment here. I had to go into the disabled toilets at the airport whilst travelling home to inject my legs to prevent clotting, something which should be done in a sterile environment, it's not right.
"With lipoedema, if you take an ulcer in your leg, which is very very common, you would really struggle to get rid of that. The number of nurses who have contacted me who are dressing women’s legs for years because of this.
"One woman who slept ten years downstairs on a seat because she couldn’t physically get up the stairs, she can’t get a bed downstairs because she can’t physically lift the weight of her legs into the bed. So many women are suffering in silence with this and there is nothing being done because there just isn’t enough education to help doctors diagnose patients who have this disease," she added.
Sinn Fein MP for Fermanagh and South Tyrone Michelle Gildernew has backed Colleen's calls for more awareness.
She told Belfast Live: "I was unaware of the effects of Lipoedema until I saw Colleen Loughran's post on social media.
"However, we all know people (mostly women) who have been treated for years with ulcers and painful, swollen legs. Women who have suffered for decades without knowing the cause of their condition, for which there is no cure.
"I hope that the awareness campaign by Colleen will help prevent others from unnecessary suffering. It's awful to think that this condition may be caused by changes in hormones, (during puberty, pregnancy, menopause or by taking the contraceptive pill) but the fact that there is so little research, awareness or cure means that once again women's health is not given the priority or resource it deserves."
A spokesperson for the Department of Health said: "Each of the five NHS Trusts currently has a lymphoedema service with an experienced staff providing care and treatment for lipoedema patients based upon recent international guidelines available from the LNNI website.
"They also provide screening and surveillance for cancer-related lymphoedema in partnership with surgical services, to reduce the potential for developing lymphoedema related to cancer treatment.
"Treatment helps reduce symptoms such swelling or tension and often helps reduce or resolve chronic pain. Exercise in water is also highly recommended by both healthcare professionals and those with lipoedema for reducing pain.
"Lymphoedema clinicians are able to provide counselling and local support, plus referrals to recognised support groups where peer support is also available."
"The use of liposuction for lipoedema is not recommended unless as part of a clinical trial. Lymphoedema liposuction is only suitable for those with lymphoedema with fibrotic and fatty tissues. Referrals can be made by a local consultant however; the service is not available in NI."
You can follow more on Colleen's recovery via her Instagram HERE.
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