Last week, parliament debated the APPG report done on Endometriosis and PCOS and the effects on the sufferers of the conditions. Please read or watch the debate here: https://petition.parliament.uk/petitions/328570. This APPG report inspired this article you are about to read, as I wanted to reply and have a say about the statistic I and many others are involved in.
I myself am part of the statics being spoken about (I took part in the survey done last year) and exceedingly happy to hear all that has been raised. I suffer from both Endometriosis and PCOS personally and feel very honoured to be contributing. I am fortunate to be a part of a community of people who relentlessly raise awareness and advocate change for something that should just be a given.
#1in10 is a statistic used to describe women who suffer from Endometriosis. The same percentages of type 2 diabetes and asthma… yet because it is viewed as a woman’s health issue it’s sadly been pushed aside. Yet Endometriosis falls within the NHS’s Top 20 painful conditions to live with; seen as on the same level as that of heart attacks. As the report states only 54% of people asked knew of Endometriosis where 83% knew of type 2 diabetes.
It takes up to 8 years to gain a diagnosis for Endometriosis. Which when struggling with fertility issues may be the only time you have. 60% of women (when gaining a diagnosis or have been diagnosed) have visited their GP over 10 times. 1 in 5 had over 10 hospital appointments. Over 50% went to A&E, and of them, 1 in 4 went over 3 times. I myself have been included in each of these statistics. This is a real system failure.
Two male members within the chamber touched upon the gendering of health care within the UK. One stated that if he approached his doctor with a complaint of erectile dysfunction, he could confidently say that he would not be turned away with the response ‘come back when you want a baby’ nor would he be fed with the suggestion of removing that organ. So I beg the question, why is this an acceptable answer for women? Another member also stated that if it was 10% of males in this situation- would it be the same? Which he states is a fair question, but is sorry to say that the answer is not one we should be proud of.
It was refreshing to hear from males themselves agreeing with the view that it simply is not acceptable that there is such gender inequality within our health care system. Within other realms, within the NHS it is imbalanced the other way (such as breast cancer and prostate cancer) I don’t agree that either of these are okay nor should be accepted and we should work hard to equalise this. Everyone has a right to equal care.
Another interesting statistic bought to light was the fact that less than 3% of the overall medical research fund goes into women-specific health concerns/conditions. This explains why we know so little about conditions such as Endometriosis or PCOS.
I firmly believe that there should be so so much more being put into education about these conditions and menstrual health across the board. From early ages to health care professionals. That the difference between what is seen or accepted as normal is distinguished so that anyone has confidence when going to a GP in need of an issue being seen to. These lines need to be made clearer. This needs to actively happen across all boards for it to have an effect on everyone involved.
If young people are educated on what is ‘normal’ or what an ‘acceptable’ pain level is then they will know when concern is meant to be raised. To then go to a GP, who should be educated in the conditions enough, to provide the right attention and care to be sent for gynecological investigation… which is where the issue of funding also plays a big part.
If there were to be more funding put into research and investigation… maybe there would be more knowledge on how to go about these conditions and how to manage/treat them.
Nobody even knows what the tissue make up of Endometriosis is, they know how it behaves and have developed some treatment. Yet how on earth are you meant to properly treat something you don’t fully understand? This is also the same for PCOS. The misunderstandings and lack of knowledge surrounding these chronic conditions is the frustrating part for all parties involved; from patients to health care providers. The relationship between both tends to break down due to lack of understanding of another and there simply not being a care plan involved in any way, shape, or form. Once you are officially diagnosed… that’s that. Just manage until it becomes that unbearable again you have to come back for another surgery to get rid of all of the Endometriosis that has grown back(which there are also more likely to be more complexities). There are no check in’s with patients and a lot of the time, no real treatment plans either. That’s due to a lack of knowledge from which you cannot develop a proper treatment plan or management for patients.
There are just many misconceptions about ‘period pain’ being normalised. Which, to me, is totally unacceptable. Patients arent being listened to which is deeply saddening. I hate to say it, but if a male typically were to turn up to his GP complaining about pain or uncomfortability with his genitals; he would be listened to seriously and offered an examination and tests. Yet if a woman goes to her GP with complaints of period pain or pain surrounding the vagina she almost has to fight to be listened to and half the time has to turn up with research about tests she wants. She isn’t listened to because of her pain being seen as something you should just live with or get on with. Which leaves many feeling invaluable and invalidated.
A pain scale of 1 to 10 is irrelevant (which is typically used) How on earth can you define somebody’s 3 to someone else 9. It’s going to vary because pain is personal and each person had a different tolerance. Pain is incomparable and should just be accepted as ‘pain’ which isn’t ‘normal’.
It’s quite disappointing to be failed by a system that’s meant to care and be supportive.
This is why it takes an average of 8 years to be diagnosed with Endometriosis. Nobody knows what they are looking for so everything gets surpassed as ‘typical period pain’ (which in my opinion should never be surpassed anyway but there we go) and then you get shoved a load of birth control pills at whatever age to help control the thing that they don’t have a clue about.
See the issue?
That’s why we need to tackle this issue from more angles than one. Focusing on building awareness, and educating everyone through putting funding into research and development to finally help the suffers from the condition.
There are very few practitioners within the NHS that specialise in Endometriosis or PCOS and it’s exceedingly difficult to be seen by somebody who knows what they are looking for or at. The waiting lists were long before COVID-19, and now they are even longer.
Gynecology has seen the biggest increase in backlog over the pandemic. Endometriosis UK (a charity) conducted a survey related to care over the pandemic – which resulted in 4 out of 5 Endometriosis patients who have had appointments have been cancelled or moved to later dates.
These poor women are just left to suffer more and more as their symptoms increase and their day-to-day becomes harder and harder to bear. It is debilitating to live with a chronic condition such as Endometriosis. The reality is that life becomes more and more difficult as time goes on but the expectations of carrying on as if nothing is happening don’t match.
I myself am one of these women. I was told in June of this year (2021) that after being on the waiting list for my second surgery since November 2020, I would have to wait another year to be seen. This was with a prolapsed uterus and adhesions fusing some of my organs together. Every day living with pain and pressure in my pelvis that had only been getting worse. Then to my surprise (because I had been asked to be put on the cancellation list too and ringing every possible secretary could) I was found a slot for November 2021 where I could have my second surgery.
I class myself as one of the lucky ones fortunate enough to be handed this opportunity but leaves me with a heavy heart thinking about all the others suffering who have to continue. It’s their lives I want to help improve too.
The debilitation after years and years of going undiagnosed or having tissue grow back has a knock-on effect on day-to-day life across everything. From not being able to put socks and shoes on properly because of bloating due to a flare-up, to things like not being able to show up to work and be reliable there. Cancelling on plans, and slowly becoming less and less of a person you once were feeling you left defeated and deflated. In 2020 (in a BBC documentary) it was stated nearly all women felt their career had been impacted due to this disease. Education is needed also for workplaces and employers to move past ‘it’s just a bad period’. It affects you just as much mentally and physically and mental health support for Endometriosis is also not available. Just the same as financial stability. Statutory sick pay only covers a person for three years (as heard in the report) it penalises those with chronic long-term conditions. Many of them also struggle to access PIP and Universal Credit (things that are meant to be there to support you) because of misconceptions and lack of knowledge surrounding Endometriosis and PCOS.
It honestly was spectacular hearing and seeing this topic being bought to parliament and being exposed yet to a wider audience. It all goes towards that building the momentum of awareness towards Endometriosis and PCOS. These chronic conditions really do affect the lives of so many people today. Hearing that the goal is to bring down the average diagnosis wait from 8 years to just 1 across the course of the year is staggering. That will be life-changing for so many out there suffering from pain and not being heard.
Having validation and treatment for what you’re going through is a transformative thing that needs to be there for so many people. Yet this can only happen if we grow this community with kindness, care, and support to raise awareness across the board and begin to set steps to make real change in the systems that currently stand.
With more knowledge from funds being put into the research that equates to a better understanding of the conditions. Meaning treatment and the lives of those with Endometriosis and PCOS can improve and they can have some validation and relief. That’s the goal as a community we should be working towards.
Please if you know someone who suffers from period pain, is seeking help, or has questions or a diagnosis. No matter who you are or what stage of your journey you are please just ask! Seek some help and advice from all over. Knowledge is empowerment. Instagram awareness pages are a fantastic place to learn from and a place where the community will support and hear you. I myself Natalie who has written this piece have my own page @unacknowledged_uterus on Instagram and became part of this community when I was diagnosed back in 2018. I have learnt so much about Endometriosis and PCOS and it’s a great place to share coping mechanisms and knowledge, and to gain support. I (and many others on Instagram too) are always welcoming to any questions anyone has. We want everyone to be empowered with vital knowledge and information, and to offer care and support to anyone who needs it.
We share a goal in raising awareness for these conditions, breaking the stigmatisations, and working towards better care and overall better lives of those who face life every day with Endometriosis or PCOS. It’s difficult and hard but it feels nice to be heard and be an important jigsaw piece in the making way to change for those who struggle 🎗
If there is anything else you need from me, please let me know. Thank you again for letting me collaborate with you. I had such a wonderful response last time.