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Endometriosis: ‘They think I’m a drug addict’ – BBC Stories


The doctor said that I was making my pain up so I could miss school. Just got told I had heavy periods. When I go to A&E, they think that I might be a drug addict. It’s taken me 11 years to finally get a diagnosis. And they were telling me that I was making it up. It just makes you feel like giving up. If a man went in and said, ‘I feel like my testicles are falling off’, they’d probably get taken quite seriously. Endometriosis is a condition that affects women, whereby cells, a bit like those in the lining of the womb, are found outside of the womb. They bleed and they cause inflammation, and this in turn can lead to often very debilitating pain. It’s estimated that one in ten women suffer from endometriosis so that makes this condition as common as diabetes. My pain feels like
I have sat on a hot knife. Putting their hand up inside you, and just like squeezing all your organs. Like someone’s getting a knife, and just whipping it around on the inside. I can’t wear tampons because
they’re too painful. There have been times I have vomited, just because it’s just so much on my body. Being misdiagnosed made me feel… Angry. Alone. Really sad. Confused. Helpless. Like nobody believed me. Endometriosis is hard to diagnose, because there’s limited awareness
about the condition. So, we still don’t fully understand
what causes the condition, how and why it develops. I got told I had polycystic ovary syndrome. I had IBS. Irritable bowel disease. Over 11 years I have been hospitalised maybe 50 times. I’ve seen doctors who have never heard of it. It’s also difficult to diagnose, because it mimics other conditions, like irritable bowel syndrome
(IBS) for example. I think the major problem is
we don’t have a simple test. And the main way of diagnosing it is by having keyhole surgery. This is a burden for women, it’s a cost to the health services, but it also has, sometimes, complications. So it’s not something that we would want to rush into. In the UK sadly at the moment,
anything between seven to eight years is the
delay in the diagnosis for endometriosis. It’s ten years of the
same symptoms just getting just getting progressively worse, and no real investigation as to why. It’s 16 years and it’s only sort of
been in the last 12 months that they’ve
mentioned this condition. I’ve seen in the region of about 50 doctors. This year? (Laughs) Five times that I’ve been in hospital, been in A&E, because of pain. It makes me feel angry but it
also makes me feel worried about all the other women out there that are currently struggling. There’s definitely some evidence that there’s a ‘gender pain gap’, if you like. Historically, women’s health
research has suffered largely because men have been
making decisions about which conditions to give
limited research funding to. People didn’t talk about
things like period pain which is obviously a major
symptom of the condition. I think society doesn’t take women’s pain, as seriously as they should. A lot of the time I’ve gone to doctors, and been like ‘I’m having pain
about my periods’. ‘Ssh! Don’t talk about it, it’s not that bad’. ‘Everyone bleeds heavily, that’s what happens’. ‘Women, they get pain, that’s just how it is’. Collapsing in the street and going to hospital in an ambulance, isn’t part of being a woman. There’s so much research and funding around diabetes, but why,
if it’s affecting the same amount of people, do we not have any more funding put behind endometriosis? We don’t even have a cure yet. Why isn’t a part of sex education at school, you do about periods, you learn everything like that, but you never get told about this condition? Why there isn’t more common
knowledge of this amongst other healthcare professionals? I find myself a lot of the time explaining what endometriosis is and how it affects me to doctors. I think things are changing
in terms of the previous lack of training. For example, Endometriosis UK and
the Royal College of GPs have put together an online
education package about endometriosis for GPs
and I think this will have a big impact on raising awareness of the condition amongst doctors. And also, there has been a push towards more funding towards trying to understand the condition, which I think is a really positive thing. I constantly feel like I have to fight. I’m fighting with my own body every single day of my life as it is, I shouldn’t have to fight with the doctor who is supposed to be helping me feel better.

24 Comments

  1. Don GMAC
    Don GMAC October 7, 2019

    First

  2. Anita N
    Anita N October 7, 2019

    I was diagnosed at 16 and honestly it breaks my heart that it could take 7/8 years for others to get a diagnosis

  3. lucy lilith
    lucy lilith October 7, 2019

    Oooooh I just read about this

  4. Dark Soul
    Dark Soul October 7, 2019

    As long as it's a women's illness, nobody cares, especially not women who don't have it.
    If misogyny has grown stronger, it's not only because of men, but also because of those bitches who think that being a woman means being a man's servant and attacking other women.
    When a man has one testicle cut because of an illness, men sympathise even if he still can lead a normal life, but when it's a woman who loses her uterus women laugh at her and brag being able to reproduce while she can't.
    That's why women keep suffering.

  5. 에르의뜰ഒElwingsഒ
    에르의뜰ഒElwingsഒ October 7, 2019

    응원해요!!

  6. BBC Stories
    BBC Stories October 7, 2019

    Here's the link to the report for those who are interested https://www.bbc.co.uk/news/health-49897873

  7. The Other Side
    The Other Side October 7, 2019

    Well, either that this isn't common in every country or in my country, women don't suffer from it. I have never heard of this in Nigeria.

  8. jazzjohnson8509
    jazzjohnson8509 October 7, 2019

    Everything said in this is so true. I have suffered from it since I was 13 and doctors only started looking into it when I joined the military at 21. I live in the U.S. btw.

  9. TheMetalGuy852
    TheMetalGuy852 October 7, 2019

    Maybe it takes so long because you have shitty socialized health care…..🤔🤔

  10. Eric Bowman
    Eric Bowman October 7, 2019

    I was wondering when the serious issues would be talked about, thank god the doctor mentions the "gender pain gap".
    I mean the problem these women have nah that's not imporant.
    The gender pain gap, that's where it's at.

  11. Linda sparks
    Linda sparks October 7, 2019

    Everybody puts so much faith in these doctors like thier gods, an there have been so many people that have lost thier lives because of thier stupid shi!, an now that is controlled by the gov it's even worst, most of the good doctors have left this, vudoo profession!! These colleges today are shi! An thier putting out shi! Enter at your own risk, a pill is all they can seem to offer they're good at that!!?? Might as well go to a vet, you'd probably get better care, they treat you like a dog anyway!!!

  12. Keauty420
    Keauty420 October 7, 2019

    I get very similar judgements and I’ve never dabbled in hard drugs. Just an average pothead trying to maintain a peaceful life. I also hate my periods they are so irregular dark and scary coloured, I have to take estrogen just to stay regular. And it barely helps. Also even though I had the loop procedure done where they cut of a portion of your cervix. There was still no clear evidence of cancer only the benign cells. Which is scary when your a parent and need to be there for your children because no one else is.

  13. Disappointed Human
    Disappointed Human October 7, 2019

    Where on earth did you get the idea that women's health isn't taken as seriously as men's?

  14. J D
    J D October 7, 2019

    "Gender pain gap" 😂

  15. Ariadne C. Coronato
    Ariadne C. Coronato October 7, 2019

    Endometriosis affect women that get longer to get child, is known as a disease of modern women. As sooner you treat, as sooner you will feel better. If you don't treat early there is a risk to not get pregnant. The best treatment is the chip hormonal implants. Took me one year to find out the diagnosis and the best treatment. I tried differents contraceptives but all has failed. I have done my treatment with the Brazilian endometriosis specialist Dr Malcon Montgomery. In São Paulo, the biggest city in Brazil, it is usual endometriosis between women as they prioritise the career and postpone family.

  16. shadowmatrx
    shadowmatrx October 7, 2019

    I'm from the US & have experienced the same. For years I was told my pain and extreme bloating were normal for every girl. Then I miscarried, then nearly died in two subsequent childbirths. I waa told my back pain wasn't real, it was "just stress" from having so many kids or "probably just IBS." No answers as to why delivery nearly killed me. Twice. I finally got to a doctor who, after years of ckecking out different things through labs, ultrasounds and surgeries determined I had adenomyosis, endometriosis, PCOS, and pelvic adhesive disease. It was a long journey. I had a partial hysterectomy at age 30 but still have daily pain. I am currently looking into excision with a specialist. I encourage everyone to visit Nancy's Nook on Facebook. She educates physicians and patients about endo & provides people worldwide with a list of qualified surgeons.

  17. Texas_Raised_ Texas _Made
    Texas_Raised_ Texas _Made October 8, 2019

    I use to have BADDDDD cramps and pain when i had my periods, heavy bleeding, cramping so bad, ide have to call my mom most times to come get me, pop a half a pill just to knock me out once at home. Hot baths would help ease the pain though but never thought what it could be

  18. Noreen Konrad
    Noreen Konrad October 8, 2019

    This illness has ruined my life. Unemployed for 3 years and hoping to be a candidate for second surgery. First surgery ablation was used! Which is ineffective. Excision is the best way to go! Please if you get a laproscopy make sure they also use excision techniques instead of ablation. The lesions literally need to be cut out! Not burnt out. I want my life back! There is no quality of life with this horrendous monster. More drs need to educate themselves on this very important topic! Women are suffering, have nowhere to turn, and are being gaslit! It’s time for a change.

  19. Soraya G
    Soraya G October 8, 2019

    10 years to diagnose me and even was left alone when i refused keyhole surgery out of fear. it’s been a year and i just feel so sad. i’m addicted to naproxen now and even i still suffer

  20. Rah
    Rah October 8, 2019

    Part of being a human is to die, part of being woman who wants a child is to go to the hospital and giving birth

  21. MustacheDuctTape
    MustacheDuctTape October 8, 2019

    It started with debilitating pain at 15 and we thought it was IBS or some other GI condition. I was officially diagnosed at 18 via laparoscopy, and it took yeeeears to get a proper surgery [excision]: until I was 22! I had ablations until then, from 18-22, and it actually made everything worse with the endo essentially feeding off of my scar tissue that formed. In the end, when I had my excision with Dr. Chatburn at Mt. Auburn Hospital in Massachusetts [plugging cause he's on the frontlines of endo research/treatment], I had Stage 3 of Endometriosis with some organs at major risk of failing due to the different ways everything was stuck together. And even after the excision, my endo still rampages on and I still have my debilitating pain. I use medical marijuana since I'm thankfully in a state that allows it and it works the best for covering up my pain. But at the end of the day, it's still there…

    We need more research, we need more information, we need more general understanding! The misconceptions about Endo are mile-high that I've probably wasted hours talking to people WITHIN the medical industry about what they might have wrong. [ex. "it's an old people's disease", "everyone has it so it's no big deal", "you can get rid of it with pregnancy", etc.] Thank you for spreading truth in this video, I know too many folks who need this info mainlined into their brain since it won't stick.

  22. Nikki’s Nimble Nails
    Nikki’s Nimble Nails October 8, 2019

    When I seen this it made me so angry 😡 yes it’s great that it’s now getting the attention that’s needed but this is long overdue and should have been done many years ago. I have suffered with this debilitating condition since I was 11years old, I have begged doctors to find out what is wrong and I was ignored and brushed off, I am now 35years old and was only diagnosed early this year when things got so bad I ended up spending months in hospital and was left partly paralysed from complications of this condition, I know rely on careers and my family for just simple tasks, because I was left for so long, the damage has been done, my only way to have children would be IVF which they turned me down for because my husband had a child years before I even meet him. My heart is broken, being a mum is all I have ever wanted but this has been taken away from me. You would think after the years of hell the health service has put us through, they would at least do the descent thing and try to help with the fertility side of things

  23. Luciana Bisco Ferreira
    Luciana Bisco Ferreira October 9, 2019

    Absolutely true!!!!

  24. Ilona Rose
    Ilona Rose October 10, 2019

    THANK YOU FOR THIS. 100% my experience. Powerful and empowering, validating. THIS NEEDS TO BE HEARD. 1 in 10 and society isn’t ready for us, to acknowledge us, but this gives me hope this is changing. At least in the UK. Too late for so many women but so NEEDED.

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