Ramsgate mum’s ‘living hell’ and four year battle for endometriosis diagnosis

Nikita with daughter Amelia

“It’s a living hell. You do not rule your life, endometriosis rules it,” says Ramsgate mum-of-one Nikita Challis who fought for four years to get a diagnosis.

The 25-year-old is now hoping to raise awareness of the condition so others can push for diagnosis and help at a much earlier stage.

In 2018 Nikita suffered a miscarriage nine weeks into her pregnancy and then began to suffer severe abdominal and pelvic pain.

She said: “I thought it would go away but it kept coming and the pain was so bad I would literally be curled up in a ball. I would wake up screaming in pain not able to move, going to the toilet was painful – it felt like someone was ripping my insides out of me. When I went to the hospital they made me feel like it was all in my head because of my mental health problems.

“After countless hospital trips and stays, ultrasounds, CT scans MRIs, there were still no answers and I just gave up.”

But, in 2020 Nikita spoke to a close friend after she had suffered another flare up and described the pain she was going through. Her friend said the symptoms sounded like endometriosis and that she should push to get it diagnosed.

Endometriosis is a long-term condition where tissue similar to the lining of the womb grows in other places, such as the ovaries and fallopian tubes.

Symptoms of endometriosis include pain in the lower tummy or back (pelvic pain), severe period pain and pain during or after sex. Some one in 10 females of childbearing age are affected by the condition but shockingly diagnosis can take some eight years.

Nikita said: “I started to research it, part of me didn’t want it to be right but I knew it was.”

Eventually Nikita was booked in at QEQM Hospital for a laparoscopy – an operation in which a camera  is inserted into the pelvis and the surgeon uses the camera to see the pelvic organs and look for any signs of endometriosis.

But before this could take place the covid pandemic hit. When ending up in hospital again Nikita says she was offered a physio appointment which did not address her condition.

She said: “I was struggling, it was awful. It set back my mental health. I didn’t know whether I was coming or going, it was an endless circle and I just didn’t want to be here anymore. I couldn’t take any more pain.”

Finally a change of consultant at the Spencer private hospital resulted in Nikita being called in.

She said: “I thought I would get answers. I explained everything and the consultant immediately said it sounded like endometriosis, which I already knew. I was booked in for surgery on February 13 but it got cancelled.”

Nikita was put on a priority list and finally had surgery on March 12 this year with the results confirmed last month.

She said: “I was told I did have endometriosis stage one and two and bowel adhesions -(areas of scar tissue that can cause organs or tissues in the abdomen to stick together). My bowel was stuck to the side of my tummy and there were adhesions on my pelvis.”

Nikita currently has good days and bad days. She said: “There are good days when I can laugh and run about and be a parent to my daughter but bad days when I can’t be that parent.”

There is no cure for endometriosis although options available are surgery, hormone treatment and pain relief. Nikita has been told that she will need a hysterectomy at some point between the ages of 32 and 36.

The four year battle for diagnosis has driven Nikita to bring the subject of endometriosis into the public eye.

She said: “There is not enough information out there, people just don’t know about it. It can often take 6-8 years for diagnosis, my diagnosis after four years was thanks to my friend telling me what it was.

“I have started an Instagram telling my story, I want to get it out there to help people still fighting for diagnosis. So many people have to google what it is but as females we should really be aware of it.

“Endometriosis makes life a living hell.”

Find Nikita on Instagram as Endowarrior Kiki at https://www.instagram.com/endowarrior_kiki/

Endometriosis facts (source Endometriosis UK)

  • 1 in 10 women of reproductive age in the UK suffer from endometriosis.
  • 10% of women world wide have endometriosis – that’s 176 million worldwide.
  • The prevalence of endometriosis in women with infertility be as high as to 30–50%.
  • Endometriosis is the second most common gynaecological condition in the UK.
  • Endometriosis affects 1.5 million women, a similar number of women affected by diabetes.
  • On average it takes 8 years from onset of symptoms to get a diagnosis.
  • Endometriosis costs the UK economy £8.2bn a year in treatment, loss of work and healthcare costs.
  • The cause of endometriosis is unknown and there is no definite cure.
  • Treatment can include surgery, hormone treatment or pain relief

 Find advice and information at Endometriosis UK here

6 Comments

  1. My son recently spent 10 hours waiting to be seen in A&E overnight (not in Thanet) so he and another patient had plenty of time to talk. She had severe endometriosis with uterine tissue in her legs, surrounding her spine …. He was gobsmacked both by the severity of her condition and her courage. So that’s one 30 something guy who now realises what a very difficult condition this is. I’m female but have only recently become aware of what real challenge this disease can be. And of course unfortunately it is not uncommon.
    It does seem to be the case that patients have long tended to be neglected and treatment delayed on the grounds that this is ‘just a woman thing’.
    Wishing you well Nikita.

    • Hi I suffer from endometriosis stage 3/4 I’ve lost both tubes and an ovary the pin is so intense getting out of bed is awful. I’ve been passed from doctor to doctor I was meant to have an operation in September but covid times come about..now my gp sending me private re nhs . Even working is bad it needs to be regonigzed

  2. Hi my daughter has been suffering from this since her periods started. No one diagnosed her, she read about her symptoms and when she left Thanet she finally got diagnosed.
    She has always wanted children and at 26 is still hoping that one day she might get lucky and get pregnant.
    Realistically she may never have children, and will probably end up adopting and giving a child or children a loving home, it’s sad that there is no cure, and very little is known about it, more research should be done, into finding a cure, I’ve seen the pain and the stress this condition has caused my daughter.
    I feel sorry and sad for my daughter and for any other girl or woman who is going through this awful condition.

  3. I had endometriosis from age of 19, following my stillborn. I was not officially diagnosed until I was 25 following laproscopy, I had numerous D&C’s. Only thing that relieved my pain was getting pregnant. Since my first stillborn I went on to have 2 miscarriages and 2 live born. So getting pregnant and having more children was not a solution. Unfortunately for me the only solution was a hysterectomy age 26.
    My bowel and bladder were all caked together to my uterus. I worked at the hospital at the time of my operation and a colleague told me that they hadn’t seen a case as bad as mine.
    I am now 53 and have been on HRT since my operation.. for years I did get phantom pains. Now the only issue I have is my bladder, unfortunately can be a common issue. Even though I did my pelvic floor exercises.
    They really need to look into diagnosing earlier it’s a condition that is alot more common now from when I had it.

  4. Well done for telling your story … I as well as some other ladies I am friends with also suffer with endometriosis. It most definitely needs to be spoken about more & for young girls to be educated on the symptoms too.

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