Melanie Rossiter is writing a book about Endometriosis (which is available on Amazon) and wanted to share her Endo journey with us today.
Melanie’s Journey: This story is taken from the introduction of my book ‘Reclaiming Feminine Wisdom: An Empowering Journey With Endometriosis’.
My struggle back to health began two weeks after the birth of my second child. I had to have postnatal emergency surgery for a retained placenta, which was followed by pain, adhesions (scar tissue sticking tissues or organs together), and endometriosis.
All this happened whilst attempting simultaneously to look after my new-born and one year old. At the time I kept a big smile on my face, replying, “everything’s fine” to the outside world, whilst my health began disintegrating before me. Not to mention the cascade of hormonal fluctuation from having two children so close together, I wondered if I was literally losing my mind; I would find myself half way through a sentence and completely forget what I was going to say.
There was no time to process the trauma from my postnatal experience, and so it just dripped out over the coming year, with unexpected twists and turns, and eventually some amazing gifts arose from the experience.
Prior to having my children, I had always had some degree of pain around my periods, but I managed them fine, and they never altered my life. It was only before the birth of my first child that they were becoming increasingly more painful. I was very lucky to conceive both of my boys quickly as it was beginning to look like I had endometriosis. Whilst pregnant, there was no pain because my periods had ceased, although this isn’t always the case when pregnant for all with the condition.
My mum had also had painful periods, and I was led to believe it was normal and told to take painkillers as that was what my mum did when she had her period. This is a story that plays out in many households around the world. My grandma had painful periods and so menstrual health was an issue that played out with the women in my immediate family, and I’m not sure how far back through our ancestral line. Women have painful periods, right?
Well no, pain whilst menstruating is not normal, this was a revelation for me. Throughout my teenage years and twenties, there was usually a degree of discomfort or pain, depending on the month, but luckily, at this time it didn’t have any control over how I lived my life.
If you grow up believing that periods are supposed to be painful and this is true for you in your experience, you do not question it. I had no education on what having painful periods meant from a holistic or medical point of view, I just thought it was what happened to all women.
The wake-up call post-birth of my second child happened after continually going into triage in hospital with jelly-like pieces of tissue from my womb; I did not realise that this was placenta at the time. I wasn’t sure because I had been told after birth that my placenta had all come out, the midwife even offered to show it all to me after the birth. We were always told to go to triage if we had any postnatal bleeding or problems, but I was repeatedly told to go home and wait to see if it would clear on its own. Eventually I ended up feeling I needed to push for a scan as my intuition was telling me something serious was going on and the wait-and-see approach was beginning to wear thin.
Finally, after a few visits, one of the doctors agreed I needed a scan and he began to take it more seriously. He said he would put me through as an inpatient rather than an outpatient to try and speed up the process. The doctor was pushing the radiology department for it urgently but they kept replying that they were very busy; but I was on the list. He told me it was likely to be around five days before I would be seen.
I am still shocked looking back at this. I should have taken myself into A and E. However, because I did not at this point class myself as an emergency, I didn’t go. I did not want to waste their time if I was wrong, and at that time I didn’t feel that I was in an emergency situation to the point where it could be life threatening. To be fair to the doctor, he did say I could try going to A and E, but it was more of a suggestion than something I needed to do.
I did not realise the risk I was taking by waiting, and lo and behold on day four I went into hospital with another section of placenta and was incredibly “lucky” that I was in hospital because when I went to the toilet, I began haemorrhaging and, before I knew it, I was shaking on a trolley with doctors pushing needles into my arm and an emergency operation ensued. It’s amazing what you remember when you go into shock, I remember the dingy hospital lights blaring at me and the doctors voice which seemed to fade into the background of the commotion. He told me “everything will be fine, you are in the right place” and I remember picturing my newly born son and thinking that I didn’t have time for this, I needed and desperately wanted to be with him. I couldn’t understand why it was happening and I felt frustrated that I’d made it clear that there was a problem before, why had no one really listened?
The significance of my body waiting for the exact moment I could get help quickly was not lost on me; I was very lucky to be in hospital at the time it happened. The trauma of this, of course, could have perhaps been avoided if I had been investigated seriously with my concerns. I kept seeing a different doctor every time. They could still see on their records that I had been in more than once and could have contacted the A and E department for their advice in this situation or whether to send me across—hindsight is a wonderful thing. I got a “sorry” from the hospital staff as I was waiting for the operation, but it was over my proceeding journey with endometriosis that I would experience time and time again how women are not heard or feel patronised by some gynaecologists who talk as if they know more about a woman’s body through the textbooks and classes they attend than the women themselves living in them.
You may feel this is a little harsh, and of course I am not talking about the experiences of all women in medical settings, but this is how I’ve felt many times. It seems I am far from alone. I wondered if I was going crazy and if it was just me that felt that there was an injustice in how I was being dealt with. It felt like there were still hints in the medical setting of a historical era of eye watering ways in which women have been dealt with by doctors. The diagnosis of “hysteria” and “it’s all in your head.” Science writer Abby Norman, who also has endometriosis, explains her own experience and research on this in her book, Ask Me About My Uterus. (You will find my thoughts on how we might have been taken away from some of our feminine wisdom in this book.)
I would later know all of this trauma to be the beginning of some beautiful discoveries, and the path towards a deeper calling.
It was after the emergency surgery and a few months of breastfeeding that my “period” returned. There was no blood, only extreme pain in my abdomen that had me in A and E. I did not know it was my period at the time, I had no idea what was wrong, and I was sent home with opiate painkillers as many women with endometriosis are.
This type of painkiller can cause constipation, which could potentially make the discomfort worse than it already is. I realised that it was happening every four weeks, so I felt it had to be related to my period, even though the pain was also around my stomach and navel area too and it continued for several months. What ensued were many hospital visits and anxiety around what was happening in my body, whilst desperately trying to look after a new baby and a one-year-old. I never really asked for help. Like many women, I felt I should be able to get on with things; after all, that’s what women do, right?
That’s what I’d witnessed many women in my life doing. I felt I needed to be strong, or what I assumed was strength at the time. Of course, strength would have been to show my vulnerability and ask for help. We must speak out, the large numbers of us who have endo (or other female conditions or traumas); silence does not beget change or awareness. By speaking out, we allow others to do the same, and when women gather in support, we can be a powerful force. It’s hard to heal in your own silence.
With no bleeding and just extreme pain in my abdomen, I believed that after surgery to remove my placenta, my womb may have had some adhesions, resulting in a condition known as Asherman’s syndrome, although this was never confirmed.
If I was bleeding, it wasn’t able to leave my body and so I feel it could have caused retrograde menstruation which could have added to my already suspected endometriosis.
The theory of retrograde menstruation leading possibly to endometriosis was acknowledged by Dr. Sampson. The blood containing endometrial cells travels backwards into the fallopian tubes and pelvic area and stays there as a lesion (displaced/abnormal tissue). This is thought, however, to happen with many women when menstruating and whereas the immune system of many women’s bodies clears it up, for some women, the cells remain outside the pelvis, and the hormonally sensitive tissue that is not where it should be follows the same cycle as the womb lining at menstruation. Bleeding into the pelvis when a woman menstruates, resulting in inflammation and pain.
However, retrograde menstruation does not explain why endometriosis lesions have been found in female foetuses. Or why some teenage girls have endometriosis (I will begin to refer intermittently to this condition as “endo”) in their younger years or from the first cycle. Or that it has been found rarely in men. Also, the endo cells are said to be “like” the ones in the lining of the womb that react in the same way as the cells in the womb, building up and breaking down at menstruation.
It may be the case that for some women they are prone due to a number of factors to develop the disease later in life. I also had a tilted womb and found both of my boys breech until towards the end with both of my pregnancies. Luckily, my first turned eventually, but with my second, I was left with the option of ECV (manual turning of the baby) or C-section, and neither of those appealed to me. The shape of my pelvis and womb whilst menstruating, I believe, may have played a part in my endo. There were many other factors that I would later uncover that I feel added to menstrual pain.
For around seven months, I was in and out of hospital being prescribed painkillers and told to wait for my gynaecologist appointment at the BSGE centre (British Society for Gynaecological Endoscopy), or what are known as specialist endometriosis centres. There are a few of these dotted around the country. Once I was finally seen by an endo specialist, they could not see anything on the scan they provided and so I was referred to a gastroenterologist to check for a bowel problem before I would be offered the possibility of a laparoscopy (keyhole surgery). The trouble is, a scan can miss endo, which is why laparoscopy is the only way to diagnose it properly.
I was angry and frustrated. The pattern was around every four weeks and a specialist centre was sending me to a gastroenterologist, but I had classic endo symptoms and had it suspected prior to my births with an MRI that showed what looked like a large lesion in the pouch of douglas, the area between the rectum and the posterior wall of the womb.
This unfortunately is very common for women with endo, and diagnosis can take seven to ten years on average. A fire of injustice began to simmer within me; how could this be?
The more I discovered and experienced myself, the angrier I became. Why was women’s healthcare being failed in so many ways? Not just for endo sufferers. I could write many books on women’s health experiences and struggles to get necessary support, or to just be heard. This is also where it becomes important to empower and support ourselves, too.
In this day and age, how can we have a disease that affects one in ten women and has the potential to have such a dire consequence on the quality of life of those afflicted be so poorly researched and understood? Why had so few people heard of it?
If it affected both sexes, such as other diseases like Asthma or Crohn’s or Celiac disease, would people know more about it? It still astonishes me how the public cannot know about such a devastating disease and the struggle women with endo go through to be heard or supported, let alone receive appropriate care. I realise that I speak from a position of privilege in the UK as there are some countries where the level of care for endometriosis is much worse or women cannot afford to pay for treatment. Endometriosis needs worldwide support.
I’ve heard enough stories from other women who also have been disregarded with their pain, made to feel like they are just ‘’drama queens’’ because, hey, it can’t really be that bad. There are so many women with endo who have stories about extreme pain and being sent home with advice to take a couple of paracetamols and use a hot water bottle, their doctors seriously displaying a lack of understanding about the toll endo can take. Never mind the many younger women who have been told they are ‘’too young’’ to have endo. Some of the suffering comes from a lack of care, understanding or awareness of how debilitating it can be. You cannot see endo and scar tissue and the damage it is causing internally and pain is subjective so outwardly you can look fine. Women with endo are used to putting on a brave face when they are experiencing pain, possibly because it is so misunderstood that sometimes we give up trying to explain it. With more awareness and understanding this can change.
It is incredibly frustrating when little is known about the true cause of a disease. I am far from alone in feeling this. The science is not there yet as to why women develop endometriosis, although there are theories and speculations, one of which I’ve outlined. What we do know for certain is that the lesions are oestrogen sensitive.
The truth is there are so many questions with so few answers, there has not been the investment, interest or research into the disease from a medical point of view, this is a serious concern when you think about the research gone into other diseases. Trust me when I say, mine is just one story from many similar stories from other women with the disease and we are beginning to speak out. This book is about what I’ve discovered about it from an experiential perspective.
Doctors hand out various prescriptions, sometimes giving the impression that they are the authority on the best path for you. But if it’s regarding menstrual conditions, it’s always worth doing your own research and asking questions so you play a part in the decisions. Be assertive with what you feel you need but know that there are many women having success reducing or eliminating symptoms through holistic approaches too, this goes for all reproductive conditions. You may want or need both but make sure you are presented with all the risks and benefits to make an informed choice, whatever route you decide to take. Many doctors don’t have the time that most of their patients need, and I do not envy the stress of their workloads. Most of them are genuinely trying to help in the way they know how, but the truth is, no one understands endo more than the women afflicted, especially when symptoms don’t fall under the “classic symptoms’’.
Endometriosis can affect far more than the reproductive system; it has an impact on other systems like the nervous and immune systems. It has also been found in the lungs, nose and even the brain, although this is rare. But women do lose organs to endo. There is even more of a struggle in diagnosis for those who have it in other areas. I suspected endo in the thoracic area. I feel blessed that the disease didn’t cause me too much difficulty in my younger years and to those whom it is affecting, there is hope and ways to support yourself that you may not have considered—this applies to many menstrual conditions too, as my experiences showed me.
My hormones were imbalanced, and my body began reacting to the disease in other ways. My immune system was low, and I ended up poorly with pneumonia (possibly related to suspected endo in the thoracic area) and back in hospital. My body couldn’t cope with the stress of looking after two young children and a disease that was rapidly raging on the inside. It was a call from my body—if I wasn’t going to slow down, I would be made to.
My heart goes out to any women suffering with illness whilst looking after children. I knew my body was desperately crying out for rest and a chance to rebalance and recover. The truth is, I could have put them in childcare at that point and focused on getting better, but I felt guilty and very sad that I might miss the baby phase. I was also lucky to even have it as an option in the first place. It was by far the most challenging and difficult year of my life. My body desperately needed to stop and recover, but there was no time; I had to keep going. Eventually I had no choice but to find another way. I was surviving and pushing through as much as I could, but I was becoming very unwell.
I tried desperately to get back to an endo centre after they sent me to a gastroenterologist to let them know I was certain I had endo or Asherman’s as a result of what happened, or that it had aggravated existing disease. Unfortunately, it would take far too long, as they have long wait lists. And so, I ended up going back to the hospital that originally referred me to the specialist centre, sigh.
I managed to get a laparoscopy booked in for a few weeks after I had my consultation, and surprise, they found endo. The surgery was not carried out by an excision specialist, which is what I wanted. There is a difference between ablation (burning the surface whilst possibly leaving deeper disease) and excision (complete excision of disease tissue). Also, with ablation, the tissue is destroyed and so it cannot be sent to pathology to check on cancerous possibilities.
There are only a number of gynaecologists who are qualified in endometriosis advanced excision surgery in the UK and in other countries, so women might be at risk of receiving inadequate treatment, with disease left behind. Not the fault of the gynaecologist; they may not have been trained in the techniques and skills necessary for advanced disease. An excision specialist knows where and what to look for and will often work in a multidisciplinary team with a bowel or bladder surgeon. They will aim to eradicate deeper disease. Some endo lesions can unfortunately be very difficult to spot.
However, I was very grateful for that surgery as I bled again two2 weeks later for the first time in months, and the levels of pain had reduced. It gave me the respite I needed and some time to take charge of my health again.
Interestingly, on the follow-up appointment post-surgery, I was told that it was a coincidence I had bled again after the surgery. Hmmm, I thought, it may be because hospitals do not like to admit to Asherman’s cases as it can be the outcome of surgery; it is not a disease of itself. I had already signed a form to accept the risk and possibility of Asherman’s before the surgery, so it was not this in itself that was frustrating. It just seemed to be discounted immediately when I mentioned it. I had also read that Asherman’s could be more likely following birth if women have had a ‘D and C’ for a retained placenta. This is because the womb is not yet healed properly. Perfectly logical, it was confusing because I couldn’t believe how quickly it was discounted when I expressed my concerns that this is what could have been causing all the pain with no bleeding. It was the fact that it was dismissed out of hand with no investigation, and at this stage, I didn’t have much energy to argue. I only wanted to get better so that I could look after my very young children. I will never know if this was truly the case.
There were many GPs and endo specialists who recommended the pill to me. It has helped with the management of symptoms for some women, providing relief, but others find they are eventually in worse pain or experience side effects, and it does not cure the disease. I was not looking for a suppression of symptoms. I also find it “intriguing” that women who only ovulate once a month are predominantly taking hormonal contraception, with many different options continually presenting themselves. Where are all the options regarding hormonal contraception for men? Ahem.
I had a strong intuitive sense that this was not the way forward that I wanted to take. I was not comfortable altering my already imbalanced hormonal system in this way. I felt that if my body was imbalanced or dis-eased, then I wanted to find a way to put the “ease” back in. I wanted to return to health and thought that there must be a way of using other natural methods to allow my body to restore itself. I wasn’t looking for a magic pill, I wanted to return my body and hormones back to a state of balance so that it could be in a stronger position to heal itself, or at least reduce inflammation and other symptoms.
Again, upon reflection, this was all part of my journey. I could never bring myself to take the pill at any time in my life and I wasn’t sure why I felt so strongly about it, but my intuition said no. I was also a reflexologist at the time and knew there were lots of holistic ways to help myself. I was about to make some beautiful discoveries about menstruation, so this intuitive sense seems very “coincidental” considering what later transpired.
I was also, however, very aware that the D and C for my retained placenta had caused a lot of damage in my pelvic area and that I would not rule out another surgery. I was very clear that if I ever needed surgery again that I would have an endo surgeon I could trust and who would be qualified in excision surgery.
I began my research and decided to have a private consultation with a surgeon in Birmingham who was renowned for his expertise but also for listening to his patients.
His clinic had a good atmosphere, and I felt at ease upon meeting my surgeon. He had a warm and welcoming smile and a presence or air about him that I instinctively felt trusting towards. Even my husband commented on his presence without me saying anything about how I felt, which made me smile. For the first time, I felt as if I had been listened to with empathy. He had the same frustration I did, having heard many times from other women how difficult it was to get diagnosed and receive appropriate care. I knew straight away that if I needed surgery again, it would be with him. I was aware that the surgery I had received previously would not have removed all my disease and that the surgeon had not checked the bowel and all other areas that endometriosis can hide. He had also ablated and not excised.
We made the decision that we would leave it a few months before deciding whether to go ahead with excision surgery. This was because my symptoms had improved from the previous laparoscopy. And now that I was bleeding again and had some lesions destroyed, I had some relief. I didn’t want surgery again at that time. I wanted to see what I could do to improve any lingering symptoms or stop the development of any further disease.
Every time we met for our follow-up appointments, I delayed, as my symptoms had reduced drastically after following the methods and insights laid out in this book. But I still had the sense that he was at some point going to help me or be part of my unfolding story. I also had a fear that I would end up in a situation like before, not getting the treatment I needed. I was still anxious after not being heard so many times. My body was still on high alert after so much trauma. I did not know then what I know now.
The support began as I ventured on my quest to return my health on all levels. I was about to unpeel so much wisdom that I had no idea I could access. If you do suffer from endometriosis or any reproductive issues, or if you are just looking to connect to your body with wisdom and love through self-care, my book offers a truly holistic and empowering feminine path. I hope the methods and insights I discovered could give you the same joy, wisdom, feminine reconnection and respite they gave me.
I want to send a special Thank You out to Melanie for being brave enough to share her personal story, struggle, and victories with us today. And we wish you all the luck with your book and Journey! ❤
And if YOU would like to share your story, you can do so by clicking here. The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.