The Good, the Bad, and the What if?

The past 8 months have been a humbling time for me. If you’ve read my blog from the beginning you will know that a good chunk of the Mrs Goodness story has involved experimentation, research, questioning, all in search of answers to various niggling little health issues. Well, over the past few months I’ve finally got some of those answers I was looking for, but as many of you will know, getting those long sought for answers is usually a bittersweet experience. My quest for good health these past 5 or so years has been an often fun, incredibly empowering journey, where I have challenged myself to take control of my health and well-being through dietary and lifestyle changes. I believe I have inspired others to do the same, and that’s something I’m a little bit proud of; it’s what Mrs Goodness was always meant to be about. So I take this blog post quite seriously, because in a cyber-world that’s filtered, edited, and cropped to perfection, I think it’s important that I share both the good and bad, the successes and failures, the highs and lows of my own experiences if I want to inspire in a way that is honest and real. Although you won’t see it on my Instagram page (how does one photograph this anyway?), I’m in a most uncomfortable place right now, as I prepare to entrust my body to medical professionals and accept that I couldn’t do it on my own, I don’t understand my own body, and I need their help. Humbling all right, but not defeated. Accepting help isn’t defeating; it’s one of the key ingredients to healing and recovery. I know that from past experience, but that doesn’t make it easy to do… especially when the kind of help you need wasn’t what you thought you wanted…

Last year my sister took me away for a tropical island getaway to celebrate my 40th birthday (yep, she’s a pretty special sister!). With 5 young kids between us (and she had a cold), you can imagine that we spent most of our week catching up on sleep, catching up on reading, and catching up with each other. It wasn’t exactly a high-intensity holiday! But when I got back, instead of feeling refreshed, I felt even more exhausted than I did before! That really wasn’t the idea, and I was at a loss to explain it because to everyone else I looked radiant and healthy, but inside I felt lethargic, low, and tired. I wrote a list of all the health issues I could think of and made an appointment with a GP. I was convinced (I have really been trying hard to listen to my gut feelings and to trust my instincts) that there was something up with my digestive system, and so I asked the doctor to refer me to a gastroenterologist. Perhaps I am gluten intolerant? Maybe I have fructose malabsorption? SIBO? Hmm, I felt like something was out of whack in my guts, and it was causing bloating, flatulence, a bit of pain and discomfort, and I was suffering headaches more often than not. The doctor looked at my list (too quickly to show she was taking me seriously, hmpf!) and suggested that most of my symptoms could be attributed to menstruation. Well, this was exactly what I’d expected and the reason why I’d brought my husband along with me – to assure her that this was not PMS and not period related! Ok, ok, so she was happy to refer me to a gastroenterologist (in fact she was very supportive), but she wanted me to get a blood test in the meantime and suggested I consider oral contraceptives to manage my heavy periods. I dismissed her suggestion without a second thought because as far as I was concerned:

  • oral contraceptives are bad for our bodies and bad for our health;
  • it seems we’re messing with our hormones enough, through xeno-estrogens, chronic stress, and gut dysbiosis;
  • synthetic hormones don’t work the same way as natural hormones, and come with known side effects;
  • and most importantly, putting me on oral contraceptives doesn’t help to figure out why I’m bleeding so heavily in the first place!

But I did have the blood test, and discovering that I had very low ferritin levels (9μg/ml) was, on the one hand, a relief (all those symptoms explained!) and on the other hand, a blow (my huge efforts to improve my diet and lifestyle hadn’t worked – enough, anyway 😞). My GP called me to talk about my low iron levels and to urge me again to address my heavy bleeding. I accepted that I had to do something but stressed that I would not consider taking anything unless she took an interest in figuring out why I was bleeding so much. For the past 5 years – except when I was pregnant and breastfeeding Daniel – I have been losing up to 250mls per month. When I saw another GP about this a couple of years ago, he told me it just happens to some women and that’s the way it is. A subsequent GP prescribed me tranexamic acid (a blood-clotting drug) to take during my period and sent me on my way. The first person to take my problem seriously was a herbalist, who advised me to cut out dairy and gluten completely, and then gave me some herbal tonics. I wrote a blog post about this part of my journey, explaining how we had got my iron levels up a bit and my bleeding down to ‘normal heavy’. I recorded my basal body temperature for a few months, but it didn’t reveal anything of concern to her. So I still had no clues as to what was causing my body to behave in such a self-destructive way. Well, this new GP assured me she would do everything she could to find some answers, and so I, in turn, agreed to work with her.

Five iron injections, a pelvic exam and then a pelvic ultrasound later, I was referred to a gynaecologist. She engaged me in a quick-fire Q&A session of about 10 questions, then turned to me and said: “Well, you have two options: a Mirena or a hysterectomy.”  As you can imagine, this came as a bit of a shock. I explained to her that neither seemed a very appealing option to me (hmm, a piece of plastic inside me releasing a synthetic hormone vs. surgery to remove my reproductive organs…?) and asked how she had come to this conclusion. She explained that I most likely have a condition called ‘adenomyosis’ – until now I had never heard of it before. I left with some pamphlets about adenomyosis and hysterectomies, and a lot to think about.

Related to endometriosis, adenomyosis is different in that the endometrial cells end up inside the muscular wall of the uterus. It is very difficult to diagnose for sure until a hysterectomy allows for a biopsy of the uterus. Unlike endometriosis, the symptoms of adenomyosis are completely removed when the uterus is removed. Like endometriosis, symptoms often go away on their own after menopause (although some endometriosis sufferers are not so lucky 😥). If my family history is anything to go by, I likely have another 15+ years before I go through menopause, so gritting my teeth and riding it out doesn’t really seem like a viable option. Because we have already decided our family is complete with two healthy children, I actually considered the hysterectomy, BUT without knowing for sure if adenomyosis is the problem, it seemed too extreme, too final, too invasive for a first course of action. I was persuaded to try the Mirena first – my GP explained that the level of progestin released is very small because it is so localised, it is quick to get out of one’s system once removed, and it has a high rate of success in alleviating heavy menstrual bleeding. It was worth a shot.

I had the Mirena in for just over 5 months before I decided to have it removed. It did help to reduce my bleeding to normal levels, but in exchange, I had spotting pretty much every single day and then there were… the constant headaches, migraines, persistent nausea like I was in the first trimester of pregnancy, ughhh… I spent Christmas Day in bed with a migraine that was impervious to ibuprofen. Perhaps I should have hung in there and waited another few months to see if things settled down, but to be honest, I was already mistrustful of the Mirena from the start. So, after much agonising and weighing up of pros and cons, as well as a horrible 2-week withdrawal experience from the Mirena, I’ve decided to have a hysterectomy.

It’s not something I’d planned for and although I believe it’s the best option I have right now, getting my head around it has been emotional. It’s scary deciding to do something that’s so final and irreversible (with risks), but to be really honest, the most difficult thing for me to cope with has been the research. Once upon a time, I would have taken the pamphlet the gynaecologist gave me and based my decision on the information I read in it. Now instead I take the pamphlets, go straight home and start googling like crazy. One search results in millions of articles, blogs, forums; mixing up fact, fiction, and feelings. I have felt almost tormented by those ‘natural’ health websites/blogs which declare that most hysterectomies are unnecessary, and could be avoided by bio-identical hormones / dietary changes / turmeric / cinnamon tea …to name but a few! Reading those was fun in the past because they inspired me to try something new (what did I have to lose by trying?). But now that I have chosen the surgical path they just make me fret. Have I missed something? Did I forget to try something? Will I regret this later? What if…? What if…? 

Part of my problem is that I feel like there’s very little overlap between holistic and conventional medicine – you’re either ‘in’ or you’re ‘out’.  I have an interest (and a belief) in the holistic approach to healing the body. But I also have an ingrained respect for the experience and expertise of medical specialists. Of course, it would have been easier, so much easier, if I hadn’t googled at all. If I’d just made a decision and ignored everything else. But I feel like the discomfort I’ve created for myself is a sort of challenge. No one said that taking responsibility for my own health was going to be easy! Having all this information to sift through and interpret is a privilege that many are denied. I feel like I owe it to them, and to myself, to take on the challenge and then accept the consequences of my decisions. I don’t want my own blog to taunt or torment you by suggesting that my homemade iron tonic will cure your anaemia, or quitting dairy will heal you, because I have learned for myself that nothing’s so simple when it comes to an individual’s health.  I believe my homemade iron tonic helped, and quitting dairy has been absolutely fantastic for my health, but I’ve done as much as I can and it just isn’t enough. And that’s ok. All we can do is our best with what we have and what we know.

I’m going into this operation without knowing for sure what my problem is. My gynaecologist believes I have adenomyosis and endometriosis (turns out excruciatingly painful bowel movements on the heaviest day of my period are not normal…), but there’s no way of knowing for sure until my uterus has been removed. I’m going to put my trust in her, and then do what I can do myself to help my body heal. I want to share this process/journey on the Mrs Goodness blog in the hope that others might gain some insight from my experiences, but most particularly, so that my own children may understand their mother and themselves better, should they ever seek to know.

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  • All the best for your surgery. We are sending you lots of love and healing thoughts.
    Love Linda, Pete and Rowan.

  • Dear Esther, my heart goes out to you, but honestly you have made the best decision to bravely go down the hysterectomy route. I suffered for ten years from age 40-50 and I became extremely poorly in the time, resisting the hysterectomy route. However, things got to the point where my life was ruled on how long I could go out for without flooding! Not pretty! In the end, I had a full hysterectomy and oopherectomy and after spending the 6 months healing from major surgery as I had a hip bone to hip bone scar to heal, I have felt great ever since. After 3 months boosting my iron levels and B12 etc levels through supplements and injections, I’ve been great. I’m now 63…God speed with your recovery and all my prayers and blessings.

    • Thank you for your kind words and for sharing your own story. I think I am doing the right thing too. I could wait until I feel worse, or it hurts more, but my kids are young now and this is when it could really make a difference to me and my family. I hope I will come out the other side with more energy – I’ve been tired for years, it feels like. Fingers crossed!

  • Thank you so much for sharing this. It’s such a similar story to my own, except that I have a few fibroids that cause the bleeding and the Mirena seems to be working for me. I still have constant pain though and it is distressing to feel like the only two options are not inline with your values of health. Wishing you all of the very best as you navigate the next couple of months.

    • Thank you for your good wishes, Fiona 🙂 I’m sorry to hear you’re suffering constant pain – I feel so lucky that I have never had terrible pain (except with bowel movements as I mentioned in the post!) I have some pain in my abdomen but I always assumed it was part of having a caesarean scar. But it isn’t unbearable pain. Chronic pain, however slight, is quite debilitating though – it’s like it wears you down. I hope that you too can find some relief/answers. Take care, Esther

  • I appreciate you sharing your dilemma and choice, particularly your comments about the uncertainties and questions that arise after your research. I’ve faced similar issues with my 2 experiences with cancer and then ME/CFS. I wish you all the best with your operation and recovery and hope that it will result in some clarity for you. I’m sure your spirit of inquiry and all the work you’ve done in natural health will help you. Hugs

    • Thank you for your kind words, Jen. I have thought many times over the past few months how it must feel to be fighting cancer and be torn between rivalling opinions on how best to manage health & sickness (there are a lot and they can be very passionate!). I’m sorry to hear you’ve had such a hard time with your own health. My thoughts are with you too, and I appreciate your generosity of spirit. x Esther

  • This is really helpful and so good to read your experience of balancing natural remedies and the best that medical science can offer us. I’m grateful for your honesty at this point in your journey and wish you the very best as you take this leap. May you heal well.

  • Thank you for sharing your journey in the murky waters that is health care/ self care. I wish you peace, clear answers and a fast recovery.