By Rebecca Drew
THIS WOMAN was branded ‘hysterical’ by medics after extreme pain was dismissed as CONSTIPATION – but it was actually caused by a SECOND WOMB where four years’ worth of period blood had built up and was on the verge of exploding.
When student, Madeleine Janes (21) from Rugby, UK, started to experience excruciating stomach pains that kept her up all night in August 2015, understandably concerned, she went to her GP to investigate.
No tests were carried out and Madeleine was told she was constipated and was prescribed Buscopan – a medication used to relieve stomach cramps – and sent on her way.
Madeleine’s symptoms persisted and started to affect her daily life and pain relief medication didn’t relieve the pain. She started to sleep in the living room at home so that the television could keep her company during the restless nights.
The pain was so intense that Madeleine went back to her GP and even to A&E several times and was turned away with her symptoms instantly dismissed as constipation on each occasion. One nurse labelled her ‘hysterical’ and told Madeleine’s parents, ‘you know how worked up young girls get.’
The constant dismissal of her symptoms left Madeleine feeling like she was losing her mind but she knew that something was wrong. With medical professionals providing little support, she decided to take matters into her own hands by removing gluten from her diet in case she was coeliac – which didn’t work.
After weeks of pain, Madeleine went on holiday to Devon with her family for her mum Jane’s 50th birthday at the end of August. After the first day, the pain was too much to bear and Madeleine went to the local hospital where to her surprise, she was finally taken seriously.
Madeleine was immediately hooked up to an IV for pain relief, had blood tests, and was moved to intensive care to be monitored closely. Madeleine was even given gas and air for her pain and the nurses and doctors all commented that she looked like a woman in labour.
X-rays and ultrasound scans revealed that she had two uteruses, two cervixes, one ovary, and was missing a kidney. Madeleine was incorrectly told she had bicornuate uterus – when the uterus forms in a heart shape.
An MRI revealed the source of her pain – her smaller second womb was blocked and filled with blood which had collected over four years of having periods. Madeleine was rushed into emergency surgery where she had over 100ml of blood drained. She spent seven days in hospital to recover and was referred to a specialist in London.
Madeleine met with the specialist in September 2015 and after an in-depth MRI scan with advanced imaging, she was deemed to have uterus didelphys – a condition where a woman is born with two uteruses, two separate cervixes and sometimes two vaginas, but this is not always the case.
Madeleine has two wombs, two cervixes, and two ovaries – she also had a piece of skin which had grown over the top of her second cervix which had been causing the blockage with her menstrual blood. On December 15, 2015, Madeleine had surgery to remove the skin and was told the next time she would need medical attention for her condition was if she decided to have children. She was told that women with her condition have an 80 per cent chance of miscarriage or premature birth.
This is something that Madeleine has had to consider from a young age and she even had an ex-boyfriend cite the fact that she may experience complications during pregnancy during a breakup which was incredibly hurtful. Madeleine is passionate about raising awareness for her condition and hopes to help others be their own advocate.
“At the start of August, I began experiencing really uncomfortable stomach pains that would start late in the day and keep me up at night,” she said.
“I had no idea what was wrong and went to the GP to be told they couldn’t detect anything other than maybe constipation and prescribed me with Buscopan.
“I can’t remember when we first decided to go to A&E but we went to A&E – the children’s department – and a doctor looked me over, felt my stomach, and sent me away again with nothing more than constipation.
“No blood tests, no scans, no further investigation. I think I was told to take some paracetamol. We went back to the GP a few more times undergoing the standard urine test and physical examination and we were still told there wasn’t anything abnormal and that constipation can cause severe abdominal pain.
“I distinctly remember one night the pain getting too much – there were a lot of tears over this time period – and we didn’t want to drive to our main A&E so we drove to our local which is just an urgent care centre.
“I remember being looked over by a nurse who labelled me ‘hysterical’ and proceeded to say ‘you know how worked up young girls get.’ She gave me an injection of Buscopan and back home we went – again no further tests. Dismissed.
“For a while it made me feel crazy, as if I was making it all up like they were insinuating. I’d never really come into contact with doctors much prior to this so I just assumed what they said was fact as they’re the ones with the qualification behind them – I don’t see it like this now.
“When I was finally taken seriously in Devon, it was the biggest sense of relief I think I’ve ever felt. It sounds strange to say but the whole situation made me feel like giving myself a pat on the back.
“It increased my faith in myself as I’d known all along something wasn’t right, even if I’d been told multiple times by different people that nothing was wrong. Getting taken seriously was the confirmation I’d known I had deserved for weeks.
“After the diagnosis sunk in, there was a lot of ‘I’ve lived sixteen years of my life not knowing what was going on inside me.’ It’s hard to explain but that’s a really weird thing to get your head around. In the space of ten minutes, I’d gained an organ and lost another organ – plus two uteruses, minus one kidney.
“Without surgery, my second uterus would have continued to fill up every month I had a period and I assume the pain would have persisted.
“When you google my condition, the stories about it in the tabloids are ones of women who have found out about their condition once pregnant or during labour, so in those circumstances it seems pretty straightforward.
“However the statistics aren’t as positive: conception can be difficult and I have an eighty per cent chance of miscarriage and premature birth. I will be at a very high risk and cannot give birth naturally but as I’ve already had the C-section surgery and a glimpse into labour pains, that doesn’t bother me. I think I’ve been mentally prepared for it to be a difficult journey since I found out at sixteen.
“When it comes to the men, most don’t know how to react, what to say or even have a response. Often they go quiet and become very awkward as if I’ve just told them some dirty embarrassing secret.
“The worst experience I’ve had with a guy towards my condition was with my ex-boyfriend. When breaking up we were discussing the reasons why we weren’t compatible to which he went on to say, ‘You know how much I want to be a dad and you can’t have children.’
“Hearing someone say that to you when they know it’s a big worry of yours is very hurtful and unforgettable. To have something that is completely out of my control be used almost against me as a reason I wasn’t good enough. What he said affected me for quite a while and became a bit of a worry of mine for future partners.”
It has been five years since Madeleine’s diagnosis and her experience has made her an advocate for raising awareness for issues surrounding women’s health.
Madeleine shares her story on Instagram.
“This September marked five years since I found out about my condition and since then, there are still so many women being dismissed and struggling to get a diagnosis and receive proper treatment and relief from their suffering – something that is so prevalent in the chronic illness community,” she said.
“The research and statistics show that women experience the healthcare system differently to men, and there is a long history of dismissing women’s pain and in 2020 this is still happening.
“You know your body better than anyone else – any nurse, doctor or specialist. Listen to your gut and what your body is telling you and keep persisting even if you keep getting turned away.
“Eventually the right person will hear you and you’ll get the help you need. It just might take a bit of time to get there but never let anyone tell you it’s all in your head.”