Endometriosis – Experiences and Observations on Women’s Health – Part 1

by JK, UK

I am a woman who has been a women’s health statistic – I had endometriosis for over three decades, which I found was an extremely painful and debilitating condition.

I recently re-visited some statistics on endometriosis and found that approximately 176 million women and girls worldwide suffer from endometriosis; 8.5 million in North America and 2 million in the UK and rising. ‘Endometriosis; the presence of tissue, histologically similar to endometrium outside the uterine cavity and the myometrium, is one of the most common gynaecological conditions in women of reproductive age, but it remains one of the most complicated and baffling’ (Rizk & Abdulla, 2003). I too had found the condition baffling…

I started my periods at age 11 in my first few weeks of starting senior school. I knew something didn’t feel right within my body not long after I started my periods, given the amount of pain and discomfort I had each month at the time of my period. I found it debilitating and sometimes had time off school (or work), lying on my bed with a hot water bottle and taking painkillers. My tummy was sore, my breasts were sore and my period cramps were extremely painful; with often no painkillers touching the pain, to the point that on a couple of occasions I went to A&E even in the middle of the night, desperate for some pain relief. I would sometimes nearly pass out with the pain. I remember walking home from school one day and having to lie down on the pavement as I was in so much pain I couldn’t walk. I would have hot sweats and feel nauseous from the pain as well as having thick clotty lumpy dark brown period blood. I would get bowel pain at the same time, diarrhoea and lower back or right hip pain. I knew some of my friends had painful periods but they didn’t seem to have the other symptoms, and often for them a painkiller would do the trick. 

My mum scratched her head with despair to find a solution for me. We tried many different pain killer combinations, different foods, vitamins and hot water bottles. When I was around 13 my mum suggested we seek medical help from our local GP, who said apart from painkillers the only other solution was to take the contraceptive pill, which I and my mum consented to, as I was desperate to seek relief for the condition and to get on with my life. At this point I found the doctor offered me little understanding for my symptoms. The pill took the edge off the pain, but many of the other symptoms remained, albeit to a lesser degree.

In my 20’s, just as I was about to get married I wondered if there was anything further that I could do for my symptoms; I was then referred by my GP to a gynaecological consultant as my GP suspected I had endometriosis. On the day of my appointment I went to the hospital hoping for a solution or explanation for my symptoms. The Consultant Gynaecologist ushered me into a room and asked me what was wrong. I told him the symptoms I had and he said “you need to get pregnant and have babies… having babies will solve your problem”, then he ushered me back out of the room. I found this an upsetting experience as I felt backed into a corner, left with the same symptoms, no further support and no more than a nod of confirmation that it was very likely endometriosis. I was just about to get married and having a baby was not on my radar. From that day forward I felt the best I could do was to grin and bear it, take painkillers and accept my predicament.

Whilst I knew oral contraceptives could be supportive in my marriage as a form of contraception, I was aware by this time I had already been on them for over 7+ years. My mum had a history of blood pressure problems and the GP/family planning clinic were already raising their eyebrows as to whether I could stay on the oral contraceptive pill in case of blood pressure problems, so they monitored me closely.

Some years later, I went back to the GP who said I had endometriosis for further investigations, and during the few years that followed I experimented with different types of contraception so as to avoid using the oral contraceptive, and also with different types of pain medication. At that point, from a routine smear test the doctor found I had pre-cancerous abnormal cells on my cervix and referred me for laser treatment, which I had shortly afterwards. After the removal of the pre-cancerous cells my cervix was closely monitored and there has been no return of these since.

At one point my GP suggested I go into hospital for a D&C (dilatation and curettage is a minor surgical procedure to remove tissue from the lining of the womb). I never did take up the offer of a D&C or a laparoscopy (a type of surgical procedure that allows the surgeon to access the inside of the abdomen and pelvis without having to make large incisions). I had become hardened, stubborn and independent in that I would ‘find my own way, exploring any kind of herb or other remedy I could find (none of which helped). I was also fearful of having a general anaesthetic (another story…). At that time I wasn’t convinced that a D&C would help, although I got to understand a little more about the medical aspects of endometriosis from doctors and nurses I saw over the years that followed. In hindsight, I now feel it would have been more self-caring to go along for the D&C and laparoscopy rather than relying on high doses of pain medication and struggling through.

Why am I sharing this alongside the initial few statistics on endometriosis?

Because, whilst I was offered pain relief, oral contraceptives and at a later date a surgical exploration and I did over time gain a little more understanding about the medical condition of endometriosis, at that time I couldn’t find any inspiring stories of how other women had managed to treat their endometriosis successfully. More so, I was never asked anything about my life and the way I was living it. I was never asked what it felt like being a woman and what in my life I was struggling with about being a woman. No connection to the physical symptoms was ever made to my daily living choices. In recent years I have found that connecting my physical symptoms to my daily living patterns and choices has helped me in not only understanding my condition further, but as a further support to myself. I wondered how much awareness of this link and the potentially helpfulness of this is considered by medicine?

This realisation of the connection between my physical condition and my daily living choices occurred when I attended a presentation by Serge Benhayon of Universal Medicine where I became aware of how these symptoms in my body were my body’s way of alerting me to the fact that something was wrong, and that something in the way I was living was not working. For the first time in all of my years of living with endometriosis, through this simple point expressed by Serge Benhayon, the penny dropped. This prompted me to reflect deeply over a period of time about the way I was living. For the first time in a long time I didn’t feel the powerlessness I felt with endometriosis; I became aware I had something to do with my condition, and as this was the case I could make some changes. And make changes I did – see for instance my blog From Black Belt Kickboxer.

Gradually over a number of years with the support of Universal Medicine practitioners (who never told me to do anything, but instead offered me gentle questions to reflect on, that then prompted me to consider my life more deeply), I made many, many gentle self caring changes to my life – from the pace of my life, to ensuring I had adequate rest, nourishing foods and exercising gently (walking for instance) etc. In this, I started to take notice of the messages my body was showing me (that it had been showing me for 30 years with the pain and other symptoms of endometriosis). Now as I write this, during my periods I no longer have any of the symptoms of endometriosis, apart from a very occasional sore breast or nagging crampy feeling in one of my ovaries; which I now use as an indicator that something in the way I’m living my life is not supporting me and I take time to reflect and honour this.

How does this then connect with the statistics and the ‘bafflement’ as cited by Rizk and Abdalla (2003) above?

What if we realised that having a diagnosis of endometriosis for example, was actually our body asking us to take a look at our lives so as to make some new and different choices? Is it possible in looking at this, this may, as it has for me, enable an understanding and take away the ’bafflement’?

What if, for instance, we can ourselves make changes in our lives to support and change a physical condition (e.g. Endometriosis), from looking at the way we are living our life?

What if, with the medical profession, we were encouraged to consider the link between the way we live our lives and the impact this has on our physical body more deeply? And what if they asked patients questions such as:

‘Is there anything about the way you are living your life that is affecting your body?’ And from this prompted to take a look at how our daily living choices impact on our physical body?

And, what if from this, women found from making self nurturing changes to their daily living (e.g. taking a moment to rest, eating nourishing foods etc.) that their physical conditions changed, and from this we had many inspiring stories from women who had done just that (just as the WINL blog offers), for us all to be inspired by and learn from?

Maybe, just maybe, that could open up women’s health to a different and deeper place – away from the bafflement to a place of understanding and true learning.

Reference: Rizk, B & Abdalla H, Endometriosis Second edition, Oxford 2003 Health Press Ltd www.fastfacts.com

210 thoughts on “Endometriosis – Experiences and Observations on Women’s Health – Part 1

  1. I had absent periods for 4 years and recently they’ve returned. I absolutely love the way my body works with me. Right down to the time and day that my period will start and how it progresses all feels precise and supportive rather than randomly occurring. For example most of the time my period starts at night, or just after work or on my day off. This has happened too many times to be considered random or a coincidence.

  2. It feels so obvious when you state it like that: is there anything about the way you are living that’s affecting your body? How often do we pay attention to how we’re moving, what we’re thinking, moment to moment, and do we clock the impact this is having on our body- and if we do, do we make the changes we know are needed? This whole blog brings the responsibility to feel and to be aware to the forefront.

  3. Our body is so wise, like a loving best friend warning us if the way we are living is not harmonious with our body, ‘I became aware of how these symptoms in my body were my body’s way of alerting me to the fact that something was wrong, and that something in the way I was living was not working’.

  4. Our body is delicate and is easily effected by everything around us so if we push ourselves too hard and against our body’s rhythm it makes sense that our lifestyle choices will show up in our physical body in some form from the impact of going beyond our natural limit.

  5. Our bodies often have to work hard to get our attention but when we finally take notice the results are amazing and you are a fantastic example of this having healed a very common illness which still has doctors baffle.

  6. How often do we look at how we are living as being a contributory factor to our illness and disease? Over the last century we have slowly given our health over to doctors and hospitals without looking at the responsibility we carry that has contributed to our conditions. What you show Jane is that when we take responsibility and look at the bigger picture things do change and we are not helpless victims of our own self made circumstances. Your blog is a great support for anyone that like you suffered excruciating endometriosis.

  7. Jane what you share is so interesting because to me there is no other modality out there that supports people to actually stop and consider what is it about the way they live that is not working for them. It may take a while to get to the bottom of this question but the deep level of healing this approach has on the body could be classified as a miracle.

    1. So true Mary and I, for one, am deeply grateful for having access to the amazing Universal Medicine therapies which have supported me to heal many issues that had been troubling me for years.

  8. ‘What if we realised that having a diagnosis of endometriosis, for example, was actually our body asking us to take a look at our lives so as to make some new and different choices?’ – This is such a different way of having a relationship with our bodies. Normally with symptoms, we are looking to get rid of them – but what we don’t consider is the way in which we get rid of them. Do we take a pill and mask it, or do we see it as a message from our bodies asking us to consider how we are living that is triggering this symptom?

  9. I think it will be amazing when the medical profession starts to ask questions like this, ‘What if, with the medical profession, we were encouraged to consider the link between the way we live our lives and the impact this has on our physical body more deeply?’

    1. Agree. and whilst they may feel it would take a longer time when seeing people, yes it might initially but in the long run it may begin to bring awareness to us all and begin the turn the tide of some of the illnesses we have today.

  10. It is really great that more and more of us are becoming increasingly aware of the connection between our physical conditions and our daily living choices, ‘I have found that connecting my physical symptoms to my daily living patterns and choices has helped me in not only understanding my condition further, but as a further support to myself.’

  11. I listened to your interview on Truth about Periods and I remembered feeling the bafflement too but more at how you were sent home with the suggestion to have babies. Of course that were different times but we still have a lot to learn about bringing all of who we are: how we are living, our body, who we are and our mental health together and work with all of that to understand illness and disease and work on healing them.

    1. Agree. Even to this day no doctor or healthcare practitioner has ever asked me how I live my daily life – except in recent years to ask whether I drink alcohol, or smoke, or ask me about the food I eat. Pretty crazy really when the way we live is what effects our health and wellbeing, yet we aren’t asked about it.

  12. Too be honest I had no idea that my body via endometriosis was showing me the harness I was living in. I was just getting on with life like everyone else, the doctors who confirmed the endometriosis via surgery wanted to stop my periods for nine months by giving me a selection of male hormone drugs; I decided not to go down that route. I saw a Chinese herbalist who described endometriosis as a damp womb and that nothing would grow in such an environment. It wasn’t until I met Serge Benhayon and we spoke about this condition was I able to understand that living in drive and hardness was having a detrimental effect on my body hence endometriosis on the right side of my body.

    1. Thank you for sharing that Mary – that is a blog in the making too. There are many many articles, studies, blogs, videos about endometriosis, but many are in a victim status, feeling stuck with endometriosis, yet as you and I have experienced, there is another way – if we look honestly and deeply at the way we are living our lives.

  13. When we as women become aware that we, ourselves, have something to do with the conditions we live with, we are empowered to make changes and no longer only dependent on the medical world but that we are responsible for our own health. Our own body is not abandoning us but giving us messages for us to treat them with love and care.

    1. Yes Annelies. I used to feel a victim of my body, have self sympathy, feel like it was bad luck, and felt very disempowered in all of that. When I realised that my body responds to the way I live, and to every daily living choice I make I realised how empowering that is. And, even if we feel the ill grace by which we have lived our lives, or the level of abuse we have accepted to that point, there is always a new choice to be made in the next moment.

  14. As a woman, health professional and now as a student of The Livingness, I find the path that most women with endometriosis have to tread is difficult and unsatisfactory. That is because medicine itself has little to offer and there can be an awkwardness from medicine when they don’t have the answers. If women came to this site, they would not only see they are not alone but find that they hold the power to make changes that will hugely support the condition. I have read so many stories of endometriosis and excruciating periods now and there is a common ‘answer’. We simply need to honour our bodies, treat them with respect and care and everything changes.

    1. Agree Fiona – and no matter what the womens health condition is – (and we are awash with womens health conditions in the world today) they do all stem from deeper rooted issues as you say. One of the first steps is to accept we are in a womens body, and to get to know what it means to live in a womens body – connecting deeply to who we are, and what is true for us in our movements, daily living choices, and in every aspect of life.

  15. When we use our bodily symptoms to take a deeper look at how we are living we have an opportunity to make lifestyle changes. Taking responsibility for our choices, rather than handing it all over to the doctor feels important. A discussion as to the way forward can then be made.

  16. True medicine leaves no stone left unturned, and the body on a whole should be assessed, treated and healed otherwise the root cause may remain un-dealt with. Some of this process will involve doctors, nurses and healthcare staff, but we also have to take responsibility for our own part to play and how we choose to live.

  17. We live in a world where we give our power away to the medical professionals and basically say, fix me, because we haven’t been brought up to listen to our bodies and we don’t choose to be responsible for our lifestyle choices. This has to have an effect. It’s so refreshing Jane to have blogs like this to explore and go deeper with these types of conditions that affect so many women, and which could really be prevented.

  18. Another great read Jane, many women suffer painful or abnormal periods, if I had been taught the correlation between period pain and discomfort and the way we live, it would have been much easier to join the dots together, and make the necessary changes, instead of continuing with the same message but not being able to decipher what it meant, and eventually just accepting it as part of life.

  19. “I had become hardened, stubborn and independent in that I would ‘find my own way’, exploring any kind of herb or other remedy I could find”. I believe this is common for many women, as they have a similarly frustrating experience with the medical system and endometriosis. It is one of those conditions that seems to take years to diagnose, then treatment is limited. If only it was common knowledge that there was a connection between our way of living as women which is now far from our true way and the underlying health issue.

    1. I agree Fiona – with endometriosis I realised I was searching outside of myself for a solution rather than going deep within to understand what my body was asking me to consider in regard to the way I was living my life.

  20. For many of us when we go to see the doctor we just want them to take away the pain and the symptoms so that we can get on with life. Not many of us actually stop to ask the question of what is actually going on within our bodies.

    1. I agree Mary, and in an acute phase or illness this is understandable, and at times we do need medical care and attention. What we aren’t encouraged to do, and we don’t often do this for ourselves is to ask what our body is trying to show us through this pain or illness. All the answers we need come from within when we choose to stop and take stock (lovingly so).

  21. Whilst the treatment of patients in hospitals can feel imposing at times it is not their fault at the end of the day as it is the demand of the many is for band aide solutions and fixers but not for true answers. Crazy I know but what if this is possible because with true answers we are asked to be accountable and responsible for the choices we make in each and very moment.

  22. Making the space to reflect on the way I have been living during the month is so important to support me to grow. I can learn so much about the way I am living from my cycle yet there can be much resistance to this means of supporting my body. I feel it is because of the enormous support it offers there’s such resistance but nominating it in every moment it arises is helping me to let go and connect more deeply to my monthly period and what is on offer.

    1. Great sharing Caroline – something we can all do is reflect lovingly on the month, or day as there is much to learn, and plenty for us to experiment with (e.g. bed time, or nutrition or hydration) in living in a way that truly supports us.

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