EXCLUSIVE: Worcester woman waits nearly 30 years for endometriosis diagnosis
She is coming forward with the support group BloodyEndoMidlands to raise awareness of the condition
Last updated 14th Mar 2023
A woman living in Worcester has come forward with BloodyEndoMidlands Support Group to raise awareness about the condition after waiting nearly 30 years for a diagnosis.
Nicoleta Cinpoes - member of the group and professor at The University of Worcester - has opened up to us about her experience in the hope that by raising awareness, fewer people in the future will go through a similar journey.
Endometriosis is a condition where tissue similar to the lining of the womb starts to grow in other places such as the ovaries, kidneys, bowel, bladder and fallopian tubes.
This can causing inflammation, create a mass (endometrioma), cause webbing and - in some cases - fuse organs together.
It is listed amongst the top most painful conditions by the NHS, with anxiety and depression common in many patients.
Nicoleta experienced symptoms of endometriosis as a teenager and went to the doctors - who were unable to diagnose her until 27 years later.
She shared with us her story: "In my case there's been a long struggle of 27 years of team after team, of specialised doctor and specialised doctor telling me just to get on with having a really bad period.
"It was only diagnosed when my body was failing to carry this illness - when I could no longer cope with topping up my levels of energy and blood from one month to the other.
"I was then recommended a hysterectomy. Only through this, did my endometriosis get discovered and by this stage it had affected several organs in my body.
"After diagnosis, this has changed not just my physical, medical management of the condition but it has validated something I have struggled with most of my life since my teenage years.
"I finally have a name for it rather than being told by a doctor that it was just something in my head."
You can listen to more of Professor Nicoleta Cinpoes' interview here:
Nicoleta is part of BloodyEndoMidlands Facebook Support Group - who are based throughout the West Midlands.
It is a group of Endometriosis patient-volunteers with 'lived experience' who helping to make a difference to Endo patients with Peer2Peer support.
The support service is uniquely linked with a Midlands BSGE centre - who deal with the most complicated Endometriosis cases to a medical gold standard.
We chatted to a spokesperson from BloodyEndoMidlands Facebook Support Group who wanted to raise some points about the condition, they do not feel are talked about enough.
"All issues in society that affect women, affect women with endometriosis"
They said: "All issues in society that affect women, affect women with endometriosis. This includes: bias healthcare, non-holistic and broken systems that especially fail women on a daily basis, domestic violence & abuse, rape, child sexual assault, child abuse, FGM, housing insecurity, poverty, racism & discrimination, chronic illnesses,
"Further to this, issues include SEN & learning disabilities; as well as trauma of all kinds including medical and major life events like infertility, miscarriages, divorce, global pandemic, death, grief and bereavement.
"Women dealing with these things have to cope with endo on top as well. "
"Endometriosis patients end up in a vicious cycle, which worsens with pain and stress"
They continued: "Cold, stress and living conditions all directly affect pain. People with endometriosis are worrying about heating or eating - especially with kids, fuel for the car, money for electricity.
"In addition to this, many chronic patients have huge amounts of medical and prescription needs each month. Mouldy, damp or draughty environments exacerbate chronic conditions to toxic effects.
"Single parents or those who are vulnerable, marginalised are often most isolated and battling much on their own. You can see how endometriosis patients end up in a vicious cycle which worsens with pain and stress.
"All of these factors will have a domino-effect on chronic health conditions if basic human needs are not met.”
To get in contact with the group - reach out to the BloodyEndoMidlands Facebook Support Group here.