Living With Adenomyosis And Controlling The Symptoms
F ollowing on from my post ‘ adenomyosis – 8 things you need to know ‘ I wanted to share my story from the beginning, from being told I may need a hysterectomy to the changes I’ve made to improve the symptoms.
I was 16 when my periods started. Some said I was “a late bloomer” I considered it a blessing.
I saw how nervous it made my peers when it came to P.E and I felt lucky that I wasn’t going through it then.
We had the talks, the demos and the embarrassing (or so it seemed), “goodie bag” that subsequently led to the boys launching tampons around the school and sticking pads on peoples back. But no talk of the pain that comes with it, nor the uncontrollable emotions.
When my periods started it was as though I was paying for the “period-free pass” I’d had for so long. I remember taking days off school, vomiting and hating everyone.
One morning I screamed for my mum, she came upstairs and I was covered in blood, I couldn’t get up to go to the bathroom so she had to help me. I was mortified.
Month after month I dealt with pain and pretty soon I became so attuned to my body, that I could even feel when I was ovulating.
The doctors put me on the pill, Cilest I believe, it was a purple box. It made my tempers wild and my skin unhappy. I had no guidance from anyone about either and due to such a lack of knowledge I was making both worse.
I took days off school because of my skin and eventually went on Yasmin. My skin cleared however my emotions were uncontrollable at times. I’d cry out of frustration and think “why are you crying?”
I was given an appointment to see a specialist at the hospital. What the Dr did was pointless, questionable and humiliating, I stood there in my underwear and he sat on a stool and felt my lower abdomen from behind and said “I can’t feel anything” and that was that. Luckily the diagnosis procedure has changed now but his nonchalant attempt made me think maybe it’s in my head?
Fast forward after having my first child, I made the decision not to go back on the pill, I noticed how different and clear my thoughts were and my ability to process and deal with emotions. After a while however, I did feel as though my periods were becoming more painful.
I kept dealing with the pain until one month when we were trying to conceive I was very very poorly. I knew my own body, I knew what different pains were and I had given birth naturally with no pain relief. Because of this I considered myself to have a high pain threshold.
However this time I was sweating, vomiting, extremely nauseous and experiencing labour like pains. For the first time ever I went to A&E as the pains were excruciating. They couldn’t find a reason, I had no blood tests, or scans so I left and dealt with the pain at home. The next day I have one of the heaviest and most painful periods in my menstruating life.
Shortly after I was pregnant with our second child and felt great. The one thing I found difficult was with 8 weeks to go I started suffering with nerve issues in my groin that would go down my legs. It was such an unusual pain and brought immediate tears when it started, then would simply vanish after a minute or so – something I later realised is also a symptom in adenomyosis.
After my second child I still decided to remain off the pill. I wasn’t made aware that if you’ve had issues with periods they can become more painful the more children you have. On Oliviérs first birthday I was organising an almighty party and a lot still needed to be done. My pre-period cramps had started the night before and I thought, ‘please behave tomorrow’.
The next day I was setting up the bunting outside and dagger like pains went down my leg and I felt nauseas. I had to lie down immediately and began to worry. The guests were arriving soon and I couldn’t walk. The pains down my left leg meant I couldn’t bend it so Rich had to help me up to bed.
I took some ibuprofen and rested. Thankfully it subsided but I still felt incredibly sick.
The periods from then were up and down in terms of pain until his 2nd birthday came around.
Surely not I thought!
I should mention at this point my periods have always been very very regular. Maybe one or two days out but nothing more.
Then it happened again, only this time we didn’t have a party planned so there was less concern about having to entertain. Still it was becoming very disconcerting.
I eventually decided to see the GP. I couldn’t get an appointment so was in with the nurse practitioner. I told her my concerns and she replied “go on the pill or deal with it unfortunately” baring in mind I’m mid 30’s so for one, so it’s not ideal, and two offering one solution and saying “deal with it” is quite unprofessional but also lacks empathy as a woman. But then maybe she can’t empathise if she’s never dealt with excruciating periods.
Months later I was ill, the first day of my period I started to burn up and I thought I was going to vomit. I took my clothes off as I headed to the bathroom. I was in so much pain I lay in the foetal position on the landing in tears. I panicked, I began to wonder what I’d do if I was in London with work and this happened.
That’s when I decided to see the GP again.
She was incredibly understanding, very knowledgable and had an abundance of empathy. She asked questions and did a light external examination to check for anything unusual whilst I lay down.
“It seems you could have endometriosis but I’ll need to refer you” she said. At last. A reason I thought, now gimme all the info.
She went into great detail and explained the options. “possible hysterectomy” stuck with me for a while. A long while. Weeks in fact. I explained my emotions and she offered anti-depressants but I politely declined.
Whilst I waited for the hospital appointment I found myself in a very low place. When I look back now it was because more was becoming clear to me in lots of areas and I was struggling to deal with it all. It was a gift in many ways as it provided me with an entirely new outlook and perspective on people, things and health – in particular.
I began researching things on hormones and diet – the relation between our stomach and the rest of our bodies. The impacts of certain exercises and stress. I immediately started to adjust my life. Many who followed me noticed the swift move into a well-being overhaul. After 6 weeks I had pretty much a pain-less period. No migraines (which would last 2 -3 days), no sharp pains and very little cramping – which a hot compress soothed.
May be it was fluke?
So after around 4 months of my hospital appointment being rescheduled, I saw the Dr. He was a fun guy with a dry sense of humour – my type of attitude. He asked questions, A LOT of questions. Did and internal and then explained the diagnosis and treatments.
He talked through the options, explained what was happening to my body and drew some diagrams showcasing uterus including graphs of hormone levels. After quite an in-depth biology lesson he then asked me what I would like to do.
I asked about a scan. He said that for adenomyosis it’s difficult to get an accurate result via a scan. The only way they can fully diagnose it is via a hysterectomy and from there they examine it. I mean it would all be well and good if they could kindly have a little look and pop it back into its home, however once it’s out it’s gone.
These were the options:-
- Hormones to make your body think you’re pregnant forever. That’s peculiar and not natural I thought. “No for this option”
- Hormones to put your body into early menopause. It means no hysterectomy however you will then suffer all the menopausal symptoms. “No for this one” – I have a school friend going through the menopause sadly, and she’s really suffering with it.
- Lastly hysterectomy. “Nope”
He said, “look, these are all options, some quite aggressive. The body is clever, it works itself out a lot of the time but I understand if you want me to arrange any of these”
I explained I had been changing a lot and that I’d noticed an improvement, I explained none of the options were something I was comfortable with.
I neither want synthetic hormones or the removal of a body part. I asked him to go through some more biology and physiology and asked if I could do this myself.
After quite a discussion he said he was happy for me to try and if there were any issues, to come back.
I went away and studied, I began to understand the body more and how things influenced our bodies reactions.
I’m currently on my 7th month of relatively pain-free periods. Once during that time I’ve taken Ibuprofen.
I was administered Mefenamic acid after the GP visit, which I have taken once for an awful migraine that wasn’t during my period.
What did I change?
The answer – almost everything.
I used to do a lot of heavy lifting with weights and high intensity exercises at the gym but stopped. Research explained how strain and stress on the body can cause inflammation and irritate uterine conditions.
So I switched to using the rowing machine, completing body weight or light weight exercises and more mindful activities like yoga and Tai-Chi.I wanted to still remain active and strong without putting a lot of strain on the body.
Funnily the rowing machine has always been the one piece of equipment that I rarely see used, often shoved in a corner and overshadowed by the cross trainer or stair master. However these machines shouldn’t be overlooked, rowing provides a solid full- body workout whilst being low-impact and non-weight bearing. Meaning it’s great for those with joint issues but also, there’s no slacking off. On the bike your arms can have a rest and on the treadmill only certain groups of the upper body are worked.
You can do both steady state and high intensity workouts, it all depends on you, the speed and the resistance level you choose. I’d highly recommend using them.
Tai-chi is a Chinese martial art. It incorporates mindfulness and health with defence through a Yin and Yang Philosophy. The focus is on the mind / body connection and using energy through the meridians.
Yoga again is an ancient exercise – this time from India, it focuses on flexibility, strength and breathing. Together they improve physical and mental wellbeing.
Moving on to diet.
I then looked at the studies relating to gut health and how an unbalanced digestive system can affect the rest of the body.
This lead me to adjust the foods I was eating and how I ate etc.
I adopted the ancient Ayurvedic method and ate mostly cooked or warm food for each meal and began including rituals. One being a morning ritual. As soon as I wake up I scrape my tongue and brush my teeth – In the UK we consider this odd to do before breakfast, as many of us are taught to brush after eating.
However after reading various books on gut health, I found out how much bacteria is grown on the tongue and in the mouth overnight, and that eating without brushing takes all that bacteria back down to your stomach, disrupting the microbiome. So for me this is a must and now everyone in our household brushes their teeth after waking.
I came across a study on the relation between dairy and adenomyosis and decided to see if removing cheese would have a positive effect. It was the hardest thing for me to give up shockingly, but I began to notice a difference in my skin.
I started cooking more plant based meals with lentils and added a broader range of vegetables. At this point I had completely cut milk around 9 months prior and after testing all the plant-based milks I found Oatly, which I love.
People believe that drinking cows milk will provide the body with the calcium it needs and without it they will become deficient – leading to bone density issues. Studies have shown that milk has little to no benefit for the bones and in fact been linked to various cancers which they believe could be down to the growth hormones and antibiotics found in milk.
There are other ways of getting calcium into your diet such as including, spinach, okra, tahini, bok choi, kale, tempeh, cabbage, mustard greens and more. An important point to note is that it’s vital to get adequate Vitamin D in your system through exposure to sunlight. SPF is important but just a little amount of time outside allows the skin to manufacture Vitamin D which in turn regulates the use of calcium. They both work together.
So after giving my food and exercise an overhaul I felt and improvement, I would still get little niggles but the pain wasn’t as draining. The sharp pains used to be intense yes, but it was the droning, washing machine-type pain that doesn’t stop was what I found so tiring.
At the beginning of September I made the decision to completely remove caffeine from my diet.
On holiday I accidentally had a decaf coffee and thought it was surprisingly decent. I then had a regular coffee and immediately felt the difference in myself between the two.
Because I hadn’t put two and two together I hadn’t realised the effects caffeine was having.
So after some tests of my own, I worked out caffeine made me bloated, feel anxious / uneasy and occasionally gave me palpitations. I monitored my periods and noticed that since I had stopped having caffeinated drinks completely – I’m talking NO starbucks chai tea, no iced mocha, no soda, nothing. Then that’s when I saw I big change.
I wondered why so looked it up, there’s compelling evidence to suggest that caffeine can exasperate uterine conditions like endometriosis and adenomyosis and irritate the digestive system which can then lead to inflammation and bowel issues which then worsen the usual symptoms that come when menstruating.
This isn’t limited to coffee. Green tea and soda are shown to raise the levels of oestrogen in females – even more so than coffee.
Just one month later I noticed a big difference in the reduction of my headaches so I carried on and 3 months went by without a headache. I had a virus which gave me a cluster within a few days then disappeared.
I kept note and this was my findings.
It’s now been almost 8 months and as a result:-
//I no longer get a headache before my period or suffer the first two days of my period.
//I’ve not needed to take any pain relief
//I do however still feel my emotions change during the month
For the last one I would recommend a menstrual journal. It will help you keep track.
The last thing I changed which took quite a bit of getting used to, was no longer using tampons.
I’d used them most my period-having life. This one was a fluke because I wasn’t looking at these as a possible cause to the pain during my period but I began to see a pattern of pain shortly after inserting them. I realised I would get cramp like pains quickly or more intensely so switched to pads and felt an immediate difference in my lower stomach.
Again I researched and found that tampons can cause inflammation which may not be an issue for many but for those who already have inflammation of the uterus and surrounding tissues – due to their condition, then this is only irritating it further.
I understand it’s hefty and I get that it’s probably sever but I’ve found a solution that works for me and I’m grateful I don’t have to go with the options offered.
If you’re dealing with the same and faced with quite traumatic options then I would say, ask yourself. Is it worthwhile changing your lifestyle or diet, using trial and error to find a solution, which may lessen or prevent painful periods?
If the answer is yes I would recommend starting with one thing and taking notes for a few months then removing or adjusting another and monitoring.
I’ve been changing my diet over the course of 17 months now and was testing things that may relate to my periods for 3-4 months when I realised what was effective. They say it takes on average 21 days to break a habit – let’s say if caffeine is your vice.
I personally found it takes 3 months before you really feel the benefits from the change although you may notice them after a month.
Keep track, even after your trials!
During Christmas I slipped into old habits and had a very uncomfortable bloated stomach, low mood,IBS and cramping. Not period cramp but a similar feeling nevertheless. I didn’t have a bad period that month but is was less comfortable than the previous few months.
That’s when I knew that my four pillars of change had worked well for me and helped me maintain balance, mentally, physically and spiritually.
Those being the three major components of wellness.
Featured image credit Mango
Thank you so much for this very detailed account of your period issues. I’m dealing with adenomyosis myself right now, and I came to the web seeking help when I saw your blog. I’ll implement the changes that you mentioned. I struggle to give up caffeine (hot chocolate, not coffee) but I will give it my all.
Thank you for sharing in brief all the way how you delt with adenomyosis yourrself. It is very helpful for the me and all the women who have the same issues. Thanks again for helping the womenkind!
Thank you so much for this! I had known about my endometriosis, but recently was diagnosed with adenomyosis. It felt like my entire world was crushed. I don’t have any children yet and the idea of a hysterectomy terrifies me. I will be meeting with GYN doctor soon, but in the meantime will start making lifestyle changes.