An estimated 1.5 million women in the UK have endometriosis, including Helen Owen, who battled to be diagnosed and treated for the disease
It was only after Helen Owen had a hysterectomy at 29 that she felt that there was light at the end of the tunnel.
She had finally found specialists who understood her condition, endometriosis.
But she knew that her pain did not end there, and if she had been diagnosed with endometriosis sooner there was a chance that the hysterectomy, along with years of agony, could have been avoided.
Endometriosis is a gynaecological condition where tissue similar to the lining of the womb grows in other areas of the body, most commonly in the pelvic region. This tissue responds to hormones in the same way as the lining of the womb but, with no outlet, it can cause inflammation, scarring and adhesions, leading to severe pain and many other symptoms.
It costs the UK economy £8.2 billion every year in lost working time and healthcare costs and affects 1.5 million women in the UK.
But endometriosis is estimated to take on average 7.5 years to diagnose.
There is no cure for endometriosis, but the condition is manageable and timely diagnosis could save women from many years of living in constant pain.
For Helen, from Rhosddu in Wrexham, she says having children early, her first when she was 17, was a blessing in disguise because she could never have imagined that she would need a hysterectomy while in her twenties.
She first had problems when she was aged 11.
Helen, who is now 30, explained: “When I first started having problems I was told my periods would settle down. They never did and got worse as time went on.
“Growing up with these problems was so embarrassing. I would cry in pain, and bleed so heavily it would come straight through my clothes.
“I visited the doctor many times but was never sent for any proper diagnosis. Instead, at age 13, I was put onto the mini-pill which didn’t help.”
She said when she finally was referred to a gynaecologist, her symptoms were dismissed and she was told to lose weight.
“I was a size 12 and had only become that size because I was too fatigued and in too much pain to exercise,” Helen said.
“Finally, in 2010, about 17 years since I had first presented with symptoms, I managed to get a referral to another gynaecologist who performed a diagnostic laparoscopy and saw endometriosis.
“He treated it by burning it – a procedure called diathermy ablation.”
Diathermy ablation is the use of heat (using a variety of techniques) to burn off the surface tissue in the pelvic cavity.
Helen said: “I have since learned that this technique is routinely used by non-specialists and all it does is burn the top off the lesions, whilst leaving most of it behind underneath the tissue.
Not only that, it causes such scarring that it makes future operations more difficult.”
Six years and eight surgeries later, Helen says she was left in more pain, with worsening bowel and bladder symptoms, and increasingly debilitated.
“I have been put on every contraceptive they could give me from the pill to the coil and the implant,” she explained.
“Every time I would see my GP or a consultant, I was told it was Irritable Bowel Syndrome, or ‘just heavy bleeding’ and was given needless medication with the view of ‘try this and see if this helps’.
“I felt like I was being ignored and made to feel stupid, imagining things or just neurotic.
“Having intimate relations with my husband became impossible, as the bleeding could start at any point; the anxiety about this – and the pain – made sex intolerable for me and put a lot of strain on our relationship, although my husband was, and still is, incredibly supportive.”
For Helen, things would only get worse before they got better.
“During this six-year period, as if things couldn’t get any worse, the doctors decided that as well as have all of these surgical treatments, I should also be given strong hormone injections called GnRH analogues – Zoladex and Prostap.”
The NHS explains that GnRH analogues are synthetic hormones that bring on a temporary artificial menopause by reducing the production of oestrogen. They’re usually taken as a nasal spray or injection.
“Little did I know – as the medics didn’t tell me – that these medications have a lot of very serious side-effects, and should not be used for more than six months in a lifetime, and certainly not without HRT alongside,” said Helen.
“I was given them for 18 months, with no HRT. As a result, I now have osteopenia which is early-onset osteoporosis. I am 30 years of age and now have the bones of a very old woman.”
Helen’s final surgery at her local hospital was something called endometrial ablation.
“This burns the inside lining of the womb and is certainly not a treatment for endo as endometriosis is, by definition, outside of the womb, not inside it,” she said.
“When it didn’t work, I was told it was my final option in that hospital and that they could do no more for me so, after seven useless and damaging operations, my consultant referred me to Arrowe Park Hospital on the Wirral which I learned is one of the many BSGE accredited specialist centres in England for this condition. Here they perform excision (laparoscopy), the gold-standard treatment method for endometriosis.”
There is no definitive cause for endometriosis and the only conclusive way to determine if a woman has endometriosis is through a laparoscopy, usually done under general anaesthetic.
The NHS say laparoscopy is a type of surgical procedure that allows a surgeon to access the inside of the abdomen and pelvis without having to make large incisions in the skin.
This procedure is also known as keyhole surgery or minimally invasive surgery.
After the operation the consultant informed Helen that despite all their expertise, she would still need a hysterectomy and this was primarily because of the damage sustained during the previous seven operations.
“Less than 12 months later, at the tender age of 29, I had my surgery. It was found that I had endometriosis on my kidneys, bladder, rectum, urethra, and my bowel was stuck to my uterus. The surgeon excised disease, cut down adhesions (bands of scar tissue) and performed the hysterectomy. He also told me that had I been referred to him many years ago this situation may never have happened.
“Even though I have had a hysterectomy, I may still need further bowel surgery in the future – a colostomy bag has been mentioned.
“This is because of the extent of the damage caused by the disease being left so long, and the burning that has been carried out.”
“I was fortunate to join an online group called Fair Treatment for the Women of Wales which has provided a lot of support for me, and is a place where I’ve been able to share my experiences with others like me,” she added.
“I still feel aggrieved that endometriosis, and the way in which it is being treated through much of Wales, has ruined not just my life but put so much pressure on my husband and my children as they have all suffered with me.
“Even though my husband and I have now been together for 8.5 years, it has put a massive strain on our relationship.
“However, he continues to be my greatest ally. We’ve had to cancel holidays, days out, family functions and for the last six years I feel as though I haven’t been a real wife or mother. It’s six years I will never get back.
“Now, though, at last, I feel as though there is light at the end of the tunnel.”
Helen’s story was featured on WalesOnline on the 9th March 2016, for Endometriosis Awareness Month. Both FTWW and Helen herself have been overwhelmed at the amount of attention her story has received, with the WalesOnline article so far being shared almost 2000 times, and FTWW attracting numerous new members in the days following its publication.