Endometriosis

“It’s frightening because it is you organs and them saying you have a problem with your right ovary and I’m like what is the problem and their like we don’t know but we are discharging you anyway.”

In February 2019 the Government announced that all pupils, regardless of their gender, will be taught facts about menstrual well-being in school.

On in ten women suffer from endometriosis and many didn’t ever realise the chronic pain they experienced wasn’t normal as there was no discussion in schools surrounding the subject.

Clair Dempsey is an endometriosis researcher, originally from Scotland but now lives in Coventry. She also suffers from the illness and chose to dive into researching it in order to spread awareness.

It took Clair ten years to be diagnosed with endometriosis after she started having symptoms aged fourteen.

Clair has even lost a job because of the lack of awareness surrounding the chronic condition. She said: “I’d applied for another job while I was waiting for surgery I got offered the job but as soon as they found out that I was needing surgery they withdrew the job offer and I’d already handed in my notice to the previous job position because they weren’t that understanding about my condition.”

She added: “and I think a lot of people misunderstand how hard it is to go through an employment tribunal there is no legal aid available so I had to self-fund that and it took a year.”

Clair feels employers don’t understand that endometriosis is a chronic and long-term condition but sufferers are still able to work full time they may just need some flexibility for appointments and hospital visits.

Endometriosis sufferers are sometimes given very little help when they go to the hospital or to the doctors when their symptoms get too much to handle.

Clair was told on a visit to A&E “you’ve definitely got something wrong with your right ovary but it’s a weekend so we can’t give you a scan.”

Clair wants medical professionals and doctors to understand that pain is not normal, even if you have endometriosis and there has to be more concern around the symptoms especially when women go to professionals for help.

She explained how frightening it is to be told there is something wrong with one of your organs and have no one concerned enough to do something to take the pain away.

Clair explained: “women with endo we know what our normal pain levels are and we often try and go to A&E only in emergency situations the same as everyone else and to then be told no you just have to deal with it that’s another thing to me.”

Clair believes the problem lies with the professionals and that something needs to be done to better educate our doctors on this debilitating condition.

Jesse Denman (23) is one of these women who has suffered from a young age. She has been repeatedly turned away and fobbed off by hospitals and medical professionals:

“They first told me at 11 that it was misintericadinitis (swelling of the glands) and put me on codeine and I have been prescribed this ever since.

 “I would miss important school tests as they wouldn’t accommodate or care and to this day I still have trouble with jobs and even some family members not taking the condition seriously.”

Shaunee Jamieson, the creator of one poll believes menstrual wellbeing needs to be taught in schools to help reduce the diagnosis time and to teach young women what isn’t ‘normal’ surrounding their periods and menstrual health.

The petition comes after 13,500 women took part in a study conducted by the BBC to reveal the devastating impact endometriosis has on their health and everyday lives.

Jesse explains only a handful of the negative consequences:

“It ruins your life when you’re told it’s just period pain, it makes you feel weak and really affects your mentality.

“I’m stunted socially depending on the date and I’m in constant fear that my partner will end up seeing me as doctors do, a dramatic girl who needs attention when actually all I need is an answer.”

Endometriosis is a condition where tissue similar to the lining of the womb starts to grow in other places of the female reproductive system, like the ovaries and fallopian tubes.

It is a long-term condition and has a multitude of symptoms and side effects, for example; debilitating stomach and back pain (usually worse during a period), pain during or after sex, sickness, nausea, diarrhoea, constipation and fertility problems.

Currently the only treatments available for endometriosis besides painkillers are hormone medicines and contraceptives, surgery to cut away some of the tissue or an operation to remove part or all of the organs affected by the condition.

Currently the diagnosis time is 7.5 years on average and many women are seeking help only to be told they are making their symptoms up or are being ‘over-dramatic’.

However, these surgeries and operations come with complications of their own as they risk infections, bleeding or damage to any affected organs. So, some women may go in for surgery to improve their lives only to make the situation even worse.

Half of the women who took part in the BBC’s survey said that they have had suicidal thoughts and many said they rely on highly addictive painkillers to get through everyday life.

Most also admitted that the condition has badly affected their education, career and relationships.

Clair explained why she believes teaching menstrual wellbeing in Scottish schools is a good idea:

“we also have to make sure that GP’s are aware this is being taught and that period pain isn’t normal and that their first line of attack shouldn’t be normally automatically the birth control pill it can mask symptoms and medical conditions for years.”

Now that research is being conducted and published an inquiry is to be launched by MPs in the near future that will see patients and healthcare professionals speak about their first-hand experiences and advise the government on how it can intervene.

By Erin Paterson