Endo-Stress. Endometriosis and stress, M’s story…
In the Endo-Stress post, you will find here everything you need to know about endometriosis and stress caused by it…
“Please God help me!!! I am struggling so much to function. I just have had one health problem after another for the last 4 years.
I gave up dancing, the thing that I love because of chronic back pain, I gave up my social life because I never feel well enough to see my dance friends anymore. I have hidden a lot of my pain and suffering from them, and they don’t see that there is anything wrong with me.
My periods make me bleed so much I am anemic and the iron supplements make me sick, so I can’t take them. I have missed so much work because I am struggling physically and mentally. I hate my job because it is so stressful, but I’m not well enough to leave and find a new one. I feel trapped!
I have tried CBT therapy twice, but life kicks me down every time I think I’m back on my feet. I fight every day of my life physically and mentally. My life is just a constant struggle.
I and my husband live with my parents because we can’t afford to live elsewhere. I worry about my mother; my dad stresses me, and he doesn’t really care about me or my mother much.
I worry about my relationship with my husband. I am struggling with my mind and body and feel ill most of the time, but I manage to get to work and keep going for fear of losing my job.
I feel isolated because nobody really understands my pain. I feel like a failure like I don’t belong anywhere. I have no way out, no peace from the physical and mental torment and I feel like I might do something bad to myself because I have had enough!
My hard work and effort to keep going get me nowhere. The only things I have to live for are my husband and my mother and I feel they are the only people keeping me alive. This is what I wrote in my diary back in February 2018.
Was I asking God to help me, just getting all my pent-up feelings out on paper, or maybe hoping someone would find and read this notebook when I had ended it all?
“This is what I wrote in my diary back in February 2018. Was I asking God to help me, just getting all my pent-up feelings out on paper, or maybe hoping someone would find and read this notebook when I had ended it all? “- “M.”
This was before I knew that the pain, anxiety, and finally depression I was suffering was due to endometriosis I had been in a cycle of pain, anxiety, and depression for 5 years, but I know that some women are in this cycle for at least 10 years before being diagnosed.
However, there is no doubt that the pain I was already suffering from the endometriosis was heightened by the constant anxiety of not knowing what was wrong with me, not being able to dance, socialize or even go out for the day, or go on holiday without experiencing significant pain, bleeding or digestive issues.
I had started to isolate myself because if I went out socially and had to leave early because I felt ill, I thought people would think I was making it up. I also just felt embarrassed. I felt that I was no longer reliable as I often had to cancel arrangements last minute.
Sometimes, I had the strength in me to go out and just endure the pain and sickness, but then after I would feel 10 times worse and then not feel well enough to work. I started to take time off work due to heavy bleeding, pain, and extreme fatigue, so I was no longer reliable there either. I felt failure!
I lost my self-esteem and I felt extremely vulnerable. These feelings made me feel extreme anxiety and even going to the cinema or theatre, or shopping with my husband became very challenging for me mentally.
I felt like I was on high alert almost all the time, and this resulted in me experiencing panic attacks on a regular basis, followed by intense lower back and pelvic pain, followed by worse problems with digestion.
My stressful job working as a medical secretary for the NHS didn’t help and almost helped trigger the anxiety, and then I found the pain and digestive symptoms were even worse.
I was caught in a cycle, a catch 22! I feared the pain and felt so ill that I might need to take time off, so I limited myself to other activities outside work. Then when I started to feel pain, or bleed heavy or feel sick, I would get extremely scared, and this would just make my pain and situation worse.
I had previously suffered from Obsessive-Compulsive Disorder (OCD), an eating disorder, and general anxiety when I was a teenager, and my OCD behaviour was also starting to come back.
I was referred for CBT for both general anxiety and OCD, and although these therapies helped me massively to keep going, they weren’t enough. I battled on in this cycle for years, I continually dropped down a hole into depression and then dragged myself back out again, time and time again.
Finally, after another episode of self-harming, I got referred on the NHS to a CBT therapist who specialises in chronic pain and life-changing illnesses. I saw her every week for 6 months and I gradually started to see a change in the way I handled pain and illness, and the anxiety it caused me started to decrease.
At times I still felt a great surge of anxiety, but I managed to put things in perspective and get back on track before things got worse.
I am grateful that I was seeing my therapist around the same time that I was attending hospital appointments after there was a suspicion that I might have endometriosis.
She helped me gain the confidence to push for a diagnostic laparoscopy to confirm a diagnosis because the gynaecologists were dragging their heels and trying me out on different hormones, which were not working and making my mood worse.
When they finally did the laparoscopy, they found the disease in multiple places all over my pelvic cavity, and what was supposed to be a day case turned into a 3.5-hour surgery and a stay in hospital. I was diagnosed with stage IV endometriosis.
I know that endometriosis is a chronic disease, there is no cure and even after having specialist excision surgery by a BSGE accredited surgeon, there is a chance that it may grow back.
I may also still experience pain and symptoms due to scarring from the surgery, and also from ovulation and menstruation, since I am no longer taking hormones due to the effect that they had on my mood.
However, if or when I do experience pain, I know that I need to draw on the techniques that the therapist taught me and adopt a different mindset.
These are the pointers I always look back on when I start to feel anxious about the pain I am feeling, or just miserable or frustrated about not being able to live life as well as I would want to:
- The pain will not be here forever, that at some point it will pass.
- I must not feel guilty if I need to cancel an event or work because of it.
- Enjoy every day that I don’t have pain and try to make the most out of it.
- To appreciate the little things.
- Make a conscious effort to avoid stress, such as getting an occupational health assessment at work to manage stress in the workplace (I work for the NHS, so you can imagine!!!).
- To slow down and take time out for me when I need to.
- Enjoy dancing and exercise when I can.
- To look after myself, eat healthily, sleep well, and exercise (even if only going for a walk at times).
- To not pressure myself if I am feeling unable to do what I previously did in the past.
- To always take action to find out new ways of combating pain, anxiety, and endometriosis, to keep reading and educating myself on these things.
- To help bring awareness about endometriosis and mental health problems to others.
Some of you may be thinking, “but of course, you were anxious, depressed, and in pain, because you have a physical illness!”
I know I have a physical illness and the pain and extreme anxiety I have suffered will have come in most part from this illness, but endometriosis is an inflammatory illness and stress is one of the biggest risk factors for it spreading, or maybe even developing in the first place.
I believe that in my case stress may have been the trigger for my endometriosis in the first place, or at least taken some part in it spreading.
Others may have different theories, but since I have suffered from mental health issues on and off all my life and have always lived on my nerves. I feel this may well have contributed to its development in me.
We must also remember that stress also has a big effect on hormones and disrupts their balance, and since another theory for endometriosis is oestrogen dominance (too much estrogen in comparison with progesterone), this makes sense to me. So, read on…
Stress, pain and inflammation…
There is no doubt that our mental and physical states are linked, and that stress and other psychological factors can not only cause pain but can also often make us vulnerable to bacterial and viral infections, as well as autoimmune diseases, cancer, heart disease, diabetes, and musculoskeletal injury.
There is most definitely a possibility that the stresses of life could be much the cause of pain and possibly the cause of the disease/illness/injury.
There is consistent and growing evidence from scientific studies that there is a connection between life events, personality type, stress, and psychological causes of pain, disease, and malignancy.
Diseases such as MS and rheumatoid arthritis are examples of conditions where a stressful childhood, life difficulties, misfortunes, or traumatic events just before the onset of the disease have been linked.
Furthermore, exacerbation of symptoms in these types of diseases has also been linked to stress factors!
So, it is entirely possible that this could be the case for endometriosis sufferers. The common process in the case of MS and rheumatoid arthritis is persistent inflammation in tissues causing long-term damage.
It is also known that the common cause of gastritis and Irritable Bowel Syndrome (IBS) is worry and anxiety. I also suffer from both of these conditions, as do most women with a diagnosis of endometriosis or endo for short!
But when it comes to endometriosis, chronic pain gives women a lot of problems – it’s invisible and no one can see it.
The very fact that you cannot explain how you feel, or you’re simply fed up with endless repeating, make you feel stressed.
This was always the case for me, and that is the case for other women.
In summary, it is my belief that stress in the mind and body is most definitely one of the most likely causes of endometriosis, whether it is caused by life stress, previous trauma, or the effect of high oestrogen levels circulating in the body, as all of these things lead the mind and body to experience more stress, thus the production of higher levels of cortisol in the blood.
I feel that stress has definitely contributed to the disease developing and progressing in me. I say this because I have lived in and out of a state of chronic anxiety for most of my life, constantly fighting against it and pushing myself to the limit in all areas of my life.
I also recognise that my endometriosis symptoms get worse as soon as I start to feel stressed, both in terms of pain, digestive problems, and fatigue. I would even go so far as to say that keeping my anxiety symptoms under control helps decrease my symptoms even more than sticking to a rigid red meat-free, dairy-free, gluten-free, wheat-free, caffeine-free, sugar-free, alcohol-free endo diet.
That said, a healthy diet is extremely important and there is some evidence that eating a specific diet and cutting out certain foods can also help reduce inflammation in the body.
It can help reduce extra oestrogen circulating in the body, and that some women with endo do find that foods containing dairy, gluten, or wheat immediately cause them to have digestive symptoms and pain, but more about that in another article!
Until then, I would strongly recommend a book about hormones used by my friend – a fellow sufferer.
You may access this book by clicking either on the book cover below…
Out of the 100 million women – almost 11 million in the United States alone – who are on the pill, roughly 60 percent take it for non-contraceptive reasons like painful periods, endometriosis, PCOS, and acne.
While the birth control pill is widely prescribed as a quick-fix solution to a variety of women’s health conditions, taking it can also result in other more serious and dangerous health consequences.
I know all women with this disease are different and find different treatments and regimes helpful or unhelpful… for example, for me hormones are a no no as they seem to mess with both my body and mind and actually increase my anxiety!
Journey to recovery…
Whilst writing this I am only 6 weeks post excision surgery for stage III endo and I am recovering slowly but surely. I am sticking to a healthy diet and eating lots of fish, poultry, green vegetables, sweet potatoes, salads, fruits that I can eat (not citrus or berries… too acidic for me!).
I have managed to cut down to a minimum intake of dairy, gluten, wheat, and sugar, opting for almond milk and gluten and wheat-free bread and cereals most of the time.
I have completely excluded red meat and alcohol because those things don’t agree with me and make me sick, and I have reduced caffeine to a minimum of one shot of coffee a day! I also take my vitamins and my magnesium supplements for the deficiencies that I have.
I manage to get away with eating a little of what I fancy and don’t experience any major symptoms unless I overdo it… but I feel I do need to have some pleasures in life otherwise my stress levels start to creep up and I feel like even eating is a chore.
I have returned to work (3 days a week) and have managed to do a little dancing in the past couple of weeks and lots of walking, although I must say I am feeling pretty whacked out at the moment even 6 weeks after surgery.
This is probably because I am still anaemic and had a couple of god-awful periods after the surgery (which is to be expected).
I also managed to get post-op gastroenteritis which slowed my recovery down…oh yes believe me I have been through hell over the last couple of months!
My hormones are still a bit messed up, I find myself feeling quite wound up at times, and I have to reign myself in and calm myself down. So again, I would strongly recommend this book – “Beyond the pill” is truly amazing!
I am still a little shell-shocked from the extensive surgery and diagnosis I have had. But I am still managing to keep positive in between my mood swings and I am still managing to move forward!
In fact, the main thing that I am focusing on now more than ever is keeping my stress levels down. Of course, it is impossible to eliminate stress from our lives, but we can learn techniques by using CBT and mindfulness to help decrease the effect.
Also, exercise (in my case dancing), Pilates or Yoga and even just doing breathing exercises can all have a huge impact on reducing stress levels.
I still feel like I have a long journey ahead of me, but I hope it is one of full recovery and not relapse. I may be wishing for miracles here because as we know there is no cure for endometriosis, just theories on treatments to relieve symptoms.
Unfortunately, it seems that at present women with endometriosis are like guinea pigs going through trial and error trying to find all the answers ourselves. The bottom line is that endometriosis research is underfunded and therefore understudied.
“Unfortunately, it seems that at present women with endometriosis are like guinea pigs going through trial and error” – “M.”
The amount of money that endometriosis gets in the context of other conditions is very small, considering how common it is and the large impact it has on women’s lives in terms of days lost at work, limited career opportunities, limited social life, relationship problems and in some cases infertility.
That is why all women with endometriosis need to stand together to help each other through this awful curse of disease and at the same time raise awareness and push for further funding, research, and ultimately a cure!
Check our blog friends because we have so much more about endometriosis. And don’t forget to join Worry Head, we have so much more information, unseen in our articles.
Wishing you all the best in your battle with endometriosis. Keep strong ladies and don’t give up!
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I’m M, Lucjan’s wife! At the age of 44, I found out that I suffer from endometriosis, which has taken years to diagnose. The following year, I was also diagnosed with fibromyalgia disorder…