Ovarian Cycle Syndrome and Women’s Health Choices

What is it about women and their health that begins with pregnancy and ends with menopause? I am talking discourse about as well as medical interest in. Why the overwhelmingly general disregard towards the rest, particularly regarding ovulation/menstruation related hormonal fluctuations and their impact (severe in some cases) on many women’s overall health and well-being? It seems that the answer lies somewhere amidst general disdainful attitudes to women, over-medicalization of anything concerning women’s reproductive organs and further patriarchal constructions of women’s role, as in that of child bearer. Perhaps the societal leaning towards “having it all” (home, family, career) lifestyle plays a part also, no one wants to admit weaknesses, particularly those so out of your control as hormonal induced physical and mental craziness. Accordingly women’s health is constructed within a focused interest on the beginning and end of birth ability. Why does general discussion on such important matters not consider the effects that constant hormonal changes have on women, from the time of first hormonal changes leading towards the beginning of menstruation until the end of their lives? There are plenty more living years available to most women post-birthing ability! Even amidst valuable activism concerned with reproductive rights (Big up the @freesafelegal campaign) and menstruation (Big up the excellent re: Cycling blog) there is a bit of a shying away from acknowledging the very large part that hormones have to play in dictating how women’s lives run. Arguments over reproductive rights correctly centre on the natal/foetal end of the spectrum, it is important to stay on message there while malevolent forces try their damnedest to remove choice from women over what happens in their own bodies. Nevertheless, the effects of hormones could be a very important part of this debate; consideration of women’s well-being regarding unwanted pregnancies also needs to raise awareness of the hormonal shit-storm that is involved in terminating or continuing a pregnancy. Hormonal changes in this instance can be so powerful that it really should be understood that a decision to terminate a pregnancy is not one anyone takes lightly. The effects do not just end the moment the invading foetus is removed, but still have all the potential to radically alter a woman’s hormonal landscape and in turn her general well-being, quite possibly for the rest of her life.

I have spent many years trying to get to the bottom of my own health problems related to my ovarian cycle and menstrual issues. I have spent €1000s on GP bills, consultant fees, transport costs to visit various clinics, and nonsensical vitamin/herbal supplements. The outcome of which is that I have given up on trying to get help and just accepted my lot. I treat my symptoms when they are unbearable, antihistamines for itching/prickling, paracetemol/ibuprofen when I cannot handle the pain anymore. I suffer the insomnia and catch up on sleep when I enter the other end of the sleep disorder spectrum. I have accepted that most days I will feel somewhat like shit, and am happy when symptoms are not so intrusive that I can successfully ignore them for the day. Tragic really isn’t it? But this is the crux of the issue, at 37 and choosing not to breed now (having already gifted the world my superb progeny 17 years ago), I am of no interest to the “women’s health” medical world. Unless I want to buy in to alternative women’s health world and do the supplements thing or start eliminating foods from my diet, “eat clean” and so on. That is just snake oil rubbish in my opinion.

During my years of research on this topic I have come across one example of a Doctor (in London) who seems to take women’s hormonal problems seriously to some extent, Professor John Studd. He believes that “the term Ovarian Cycle Syndrome should be used to include all of the cyclical, physical and emotional symptoms that occur monthly following ovulation and that this name should replace PMS or PMDD”. His clinic is focused on gynaecological endocrinology. I once considered if I could afford to go see him at one stage, but the combination of prohibitive fees and my worry/scepticism regarding how many visits would be required put me off. Having to travel to another city in another country to try getting the right help did not seem like a very sensible or helpful way to try combat health problems which cause you additional stress. I am yet to find a medical professional who views women’s health similarly here in Ireland. Thus I remain unwell.

The general medical world does not concern itself with women who are not birthing, dying or ending their ability to birth. Understanding of women’s health centres on Birth, Abortion, Women specific Cancers and the Menopause. Consideration of the havoc that hormones play with women’s general wellbeing is not as popular field of medicine so it seems. There is plenty of outside interest in women’s health and well-being if it relates to the birthing ability/status of a woman. Meanwhile there is little interest in the mental and physical health status of a woman trapped in a prison of wildly oscillating hormones. It begs the question why do we not have a society which recognises that because women are genetically organised to give birth that that goes hand in hand with a complex hormonal structure which can often disrupt the bearers everyday lives. Why can’t we be more understanding of how extreme that can be for many people and thus be more kind, whether we are medical professionals, peers, colleagues, family members or friends? Why are menstruators not encouraged to be vocal about their on-going adventures in menstruation? Why is the cyclical nature of the ovarian cycle not widely recognised? I have always tried to be a menstrual activist; long before my ovarian cycle began to qualitatively disrupt my life so much, I was always vocal about menstruating. I had no shame in openly discussing my menstrual travails with school peers, both male and female; I felt it was important that I did not hide something that I was primed to experience for at least 30 years of my life. Now that I have been forced to understand the wider cyclical nature of the whole female hormonal experience I believe it is necessary to start advocating for ovarian cycle activism. It is important for all women’s rights activists to appreciate this and integrate ideas surrounding the cycle in to the broader discourse. Let’s recognise and understand the intertwined nature of the ovarian cycle with other issues that affect women directly and respond with empathy.

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My Menstrual Life Story

My menstrual life story: the early years were dominated by pretty typical menstrual related events: a little depression, cramps, some (uncontrollable at times) mood swings. Pretty much what the esteemed journal Viz refers to as a blob strop, with pain.

BLOBstrop

I became pregnant at 19, and contrary to my beliefs, on choice etc., I chose to continue with the pregnancy. Ever since, my hormones have entirely altered, tending to affect my health more obviously and in increasingly negative ways ever since, extremely so since I entered my 30s. While often having been diagnosed as on the cusp of anaemia, during pregnancy the (parasite) baby took all of my iron for himself leaving me with a pretty full-on iron deficiency that resulted in a number of dangerous dizzy/fainting episodes where I also couldn’t see properly! Thankfully, that regulated itself within a few weeks of him being born, (I assume I was taking iron supplements too?), then a myriad of new and unusual symptoms began to plague me, accruing over time. I began to get small nasty eczema patches on my hands. I had previously been a minor allergy sufferer, a few bouts of hayfever, and a tendency to get sinus headaches/infections at the tail end of a bad cold the odd time mostly. Now I was suddenly afflicted with hand eczema (which lasted for a number of months then receded to  more of a winter thing, reaction to weather & heating most likely) and also started to get regular bad sinus infections. Trips to the doctor (free at that time as I was entitled to a medical card) confirmed that it is not unusual to suffer bad bouts of sinusitis and infections in your mid to late twenties but the GP did not elaborate further as to whether this was hormonal fluctuation related or not.

As time wore on my emotional/psychological symptoms began to increase, I found myself having increasingly uncontrollable bouts of rage mixed with bouts of miserable depression so I embarked on the roulette game of going on the pill. Going on the pill is a bit like taking medication for depression or other mental illnesses, no medical professional actually knows what one will “suit you” thus they just prescribe three month cycles of different ones to see how you react with them. It’s a tad scary, particularly when you are in the throes of strong emotional and psychological reactions to your hormonal trouble. My experiences of the Pill all ended in negativity, some began with positive effects but my symptoms would always eventually return and when they did stronger than ever before. The side effects from the pill were many and varied; from borderline homicidal rages to terribly sore breasts, to nausea, misery and many more.

Further health developments occurred after I moved house, began attending college as a mature student and was juggling childcare, housekeeping, study, work and commuting which was all very tiring. When summer came about after my 1st year in college I developed a strange illness manifested as stiff joints, particularly on waking in the morning, but also persisting throughout the day. I was in quite a bit of discomfort and felt generally unwell. The GP could not get to the bottom of what this was; I was prescribed a series of anti-inflammatory drugs, each of which caused nausea and did not really relieve the symptoms. I was tested for arthritis, results came back clear. I never received an actual diagnosis thus I can’t say whether this was a purely female hormonal issue, or more of a stress hormonal issue, or perhaps a combination of both. Significantly for me, it does mark a trajectory towards further ill health which is of a more obviously hormonal and ovarian cycle origin.

The following autumn/winter I developed a minor skin condition on my face. a couple of small patches of tiny little spots or pimples, sometimes itchy or sore , but mostly just unpleasant to look at from my perspective. In despair following some misdiagnosis and prescription of incorrect treatment, I ended up paying to attend a private dermatologist who diagnosed it as a small bout of adult acne. No explanation as to why it came on was offered, I was prescribed a long course of antibiotics (with strong side effects so I didn’t complete the course) followed by Zindaclin gel which cleared it all up efficiently. After this I continued to struggle with the more familiar but getting increasingly worse symptoms of anger issues, mood swings, depression and now intensifying additional physical pains.

Some years later things intensified, I was under stress anyway, I was about a year through reading for my PhD, and now in my 30s. However, nothing prepared me for the onslaught of troubling pains/other symptoms that came upon me and have only worsened since. For several months I was experiencing pains in my side, quite intense and unpleasant usually coming in conjunction with headaches, back, muscle and joint ache and sleep disorder. Since aches and sleep disorders were symptoms I was used to living with at this stage, the side pain definitely got my attention. Nevertheless I put up with the pain, and ensuing disruption from it, for a considerable length of time. Eventually I mentioned it to a friend who suggested it might be ovulation related. I had never considered that before so started to keep a record of when I experienced the side pain, lo and behold it transpired that it happened around about ovulation time every cycle. So I returned to the GP. The sympathetic female GP at the practice at the time was from the helpful school of belief that PMS and “women’s problems” do not exist. It took some convincing to get her to believe that I was genuinely suffering; she eventually agreed to refer me for a pelvic ultrasound and a visit to a consultant gynaecologist. The pelvic ultrasound did not identify any issues. The gynaecologist also lacked in empathy and bedside manner. He prescribed a course (3 months) of progesterone called Duphaston and sent me away again. I had an adverse reaction to the progesterone, I got excruciating breast pain, continued to get pains in my side around day 10-12 despite the hormones supposedly stopping ovulation and got bleakly depressed. After experiencing some incredibly dark depression veering into suicidal ideation territory, I stopped taking the pills. When I returned to the gynaecologist, some months later, he was dismissive of my reactions to the hormones and suggested there was nothing wrong with me. He informed me there was nothing else he could do and suggested I go get acupuncture. [Incidentally I had undergone acupuncture, alongside a course of “Chinese herbs”, some years earlier, for my sinusitis predominantly. However, after they did a full medical history with me they were also treating me for my menstrual/ovarian cycle issues. It did not help! Needles are not for me, I got no relief whatsoever from it, just discomfort and annoyance.] I told the gynaecologist about my previous unhelpful acupuncture experiences but he was done with me. So I continued to suffer, taking various concoctions of herbal supplements (as I had done in every intermittent period between doctor visits and desperation) none of which ever provided any change in my circumstances. Over the years I have played with Agnus Castus, Vitamin B6, Vitamin B Complex, Starflower Oil, Evening primrose Oil, Spirulina, Calcium, Magnesium, Vitamin D, Zinc, in varying doses and combinations, to no avail.

After some extensive research as to where I could find a medical professional to take me seriously, I came across a GP in Goatstown who specialised in using a combination of standard medical practice with functional medicine. He charged a fee of €195 for 1st visit, followed by €180 per visit thereafter, to consult on complex/ unexplained illnesses. While my gut instinct screamed charlatan, my desperation drove me to seek out an appointment just to see if a different approach might get me some results? It was certainly a more pleasant doctor visit experience insofar as I had plenty of time to list all my symptoms, a good long discussion about all that ailed me alongside what was going on in my life. However, for 4 times the price of a GP visit in my locality, at the time, that should be a given! Following the first visit I was sent to the local hospital, local to Goatstown that is, to get a series of blood tests at different times in my cycle, Days 1-3, Days 10-12, Days 18-21, to measure hormones in the blood. I also had to arrange to order and purchase a saliva testing kit from a diagnostic testing place in the UK then return it by courier. I had drawn the line at putting a stool sample in the post. After all the tests I returned to the Goatstown GP for my “results”, which unsurprisingly shed no light on anything, apart from the saliva tests suggesting my adrenal function can sometimes be borderline low. These “results” led to “prescription” of a long list of supplements, some sold exclusively at the Clinic premises, and suggested I had heavy metal toxicity, unusual since I hadn’t been “tested” for it. Perhaps it was from my Metallica obsession days? In my anger and confusion I made a follow up appointment and even bought some supplements in a (slightly) cheaper health shop on the way home. I subsequently cancelled the next appointment, then estimated that between the 2 visits to Goatstown, the diagnostic testing kit, the supplements bought, the transport costs incurred both to his surgery and to the hospital for blood tests, that I spent the best part of €1000 for nothing. Can anyone fathom how frustrating that is, how despondent it leaves you when your pockets have been cleaned out but still you feel like shit and have no hope of improvement looming on the horizon at all? Needless to say reading this piece  by Jeanette Winterson regarding the menopause irked me something incredible, as she advocates for this snake oil charlatan strand of “medicine”. In my experience all it amounts to is having a seemingly nice person sit down and listen to your ailments while they siphon a large amount of money off of you.

For the next 2-3 years the symptoms persisted getting progressively worse with each cycle; which had shortened to a 25/6 day cycle. A clear pattern of hormone surges, cycle day troubles began to emerge. Manifested initially as a 4-5 day period, followed by 5-6 days feeling okay, circa day 10-12 (sometimes for a couple of days) I would experience ovarian pain at ovulation time. On bad cycles the ovulation pain/mittelschmerz would include excruciating pain, on some occasions non-stop for a whole day, other occasions a few hours each day. Additional symptoms included sweating, insomnia, fatigue, brain fog, weakness and lethargy. Then I wouldn’t feel so bad again until Day 16, which is when the classic PMS symptoms kick in albeit 10 days before menstruation is due to begin. This usually starts with terrible mood swings, serious flying off the handle stuff and rages, then I have no ability to regulate my body temperature which usually results in me being too hot when everyone else in the house is feeling the cold, and too cold (with ice cold extremities) when everyone else is warm. This runs in conjunction with extreme tiredness, cramps, muscle and joint aches and tender breasts. The muscle/joint aches are often exacerbated by a dragging pain sensation, particularly in my legs, but often it starts from the shoulders down, most uncomfortable and fatigue inducing. So day 16, sometimes 17 too, would be quite severe on this symptom level then the symptoms would fluctuate in severity until my period begins on day 25/26 with varying levels of depression also. This pattern persisted until just over a year ago when some more horrible things began to add to the cannon of misery. Firstly the acne condition returned, worse than before, not that bad in comparison to real sufferers (but since I never suffered that badly with spots/acne as a teenager it is very noticeable and ugly to me). I put up with it for a while until I decided I needed a prescription for the gel that helped clear it up before. Just before this the itching kicked in. I started to experience incredibly irritating all over body itching, my skin felt prickly all over and I couldn’t sleep as I couldn’t stop itching and consequently scratching, it drove me nuts. So when I attended the GP in order to request the prescription I explained the itching phenomenon to her and was met with a “poor you, bloody hormones eh” response. She suggested vitamin B complex might offer some relief, I was already dabbling in that nonsense again which unsurprisingly turned out to be of no help, yet again. As of yet I cannot really distinguish an explanation for this itching phenomenon. It appears to come on just before and during ovulation time, yet it also flares up during  the premenstrual time, days 16-26, on occasion; I have also recorded it as particularly bad just prior to menstruation a couple of times. I am yet to discern what exactly is causing it. The itching has led to a resurgence of the latent hand eczema, which returned last autumn/winter and shows no sign of going yet. Every time the itching flares up, so too does the eczema, at varying levels of severity. I also experience bouts of all my energy and colour draining out of my body, which is both physically and visually obvious to me and those around me, usually punctuated by intense fatigue, sometimes nausea. For a few years I have been getting this thing I liked to call hot knees, my knees would be stiff and quite hot to the touch, sometimes red to look at. This has evolved into an erratic stiff left knee; it can be quite painful, sometimes audibly clicking. It is symptomatically reminiscent of osteoarthritis, but recently after having an intense period of constant pain from it for a number of weeks, it then disappeared for almost 2 weeks until just this week when it returned, baffling? Worryingly still I suffer a heightened/hyper-sensitivity to the atmosphere and odours, smells, scents; it is a terrible hindrance and intensifies with any hormonal peaks and surges throughout my cycle. It basically means that I am assaulted by all manner of unpleasant olfactory sensations. I now have way more allergy days than I have ever had before in my life, so persistently get headaches alongside classic hay fever type symptoms. Regarding headaches, I have pretty much learned to live with a constant dull pain in my head, around my eyes and sinuses, tending only to refer to headaches with searing pain as actual headaches since I have become so accustomed to perpetual head pain. I have since began to notice a deterioration in my cycle that means I no longer experience any particularly well feeling days in between menstruation and ovulation, or vice versa, there just seems to be constant daily issues from the slightly annoying to the I need to stay in bed level of severity.