Abstract
When asked to write this piece my first thought was where will I begin? I feel its best to start from where I am today and work backwards. Today I am a happy, confident 32-year-old woman who is happily married with two beautiful children. I have a part-time job that I enjoy and I also run my own successful business working as a keynote speaker and trainer. I have no major health issues and I manage my surgical menopause very effectively using estrogen and testosterone hormone replacement therapy (HRT) in the form of patches, gels and a vaginal estrogen cream. I am so grateful to finally be able to enjoy my life every week of the month and as far as I am concerned I owe my life to the gynaecologist who correctly diagnosed me and continues to support me in managing my challenging endocrine system!
The reason that I am in surgical menopause is because in 2009 I made the decision to have a hysterectomy and removal of my ovaries to rid myself of a hormonal condition that had plagued my life for 10 years. I suffered from a severe form of premenstrual syndrome, recognized by some as premenstrual dysphoric disorder (PMDD). Interestingly, this is where the first stumbling block is for sufferers like me – no-one can agree on what to call this condition. I read with interest lately that this issue will hopefully be resolved with the International Society for Premenstrual Disorders looking to implement a new classification, which will hopefully lead to better diagnosis for women such as myself. I am hopeful that with a clear set of diagnostic criteria women will no longer have to be shunted from pillar to post as myself and so many others have.
I presented with mild symptoms in my teens. My medical notes document ‘issues appear to be cyclical’. But being a bashful teenager – I put up and shut up when I was informed that periods are just part of a woman's life, learn to live with it basically. So I did – talking about periods, etc. was SO embarrassing at that age. So I muddled through trying various different contraceptive pills, which all gave me a different selection of side–effects, but for me it was a case of which was the lesser evil. I agreed to try the contraceptive injection (age 22). After the first injection I bled almost continuously for 12 weeks and became depressed. I was advised this was quite normal and it would settle, so agreed to another injection. The bleeding did not stop and the depression became much more apparent. I also remember becoming fairly anxious at this time and I recall that I suffered from insomnia – so much so that my fiancé and I ended up sleeping in separate beds as I disturbed him so much during the night with my constant tossing and turning. So back to the general practitioner (GP) I trot. This time I asked for a referral to a gynaecologist and explained that I was sure that my symptoms had something to do with hormones. The doctor felt that this was not required, that we should just stop the injections and return to using a contraceptive pill. It was documented that I had become very depressed on the injections – and I recall being offered some advice on how to reduce stress as she felt that stress/depression could also affect menstrual bleeding. (This I agree with to a certain extent but come on – 24 weeks of almost constant bleeding after a hormone injection kind of screams out adverse reaction of some sort!) I should probably point out at this point that I had no history of any mental health issues – and thankfully after correct treatment for my condition I have no continuing issues in this area. I will also point out that I fully understand how my condition could go unrecognized for such a long time as the many symptoms of PMDD can easily be misdiagnosed as symptoms of other conditions. I was equally confused at times by the often very puzzling symptoms that I presented with – it was only when the penny dropped that there was such a definite link to hormones – that by reflecting upon my medical history a very clear pattern emerged.
So anyway – I struggled on for another year trying a spell of time hormone contraceptive free before returning to the pill to control bleeding for my wedding. I returned to my GP. I recall this very vividly as I was only married a few months and my moods and bleeding were understandably interfering with married life. It was noted that I was still bleeding irregularly when off the pill. Bleeding was occurring approximately two weeks of the month. I was referred to see a gynaecologist. In November 2003, I attended my long-awaited appointment. I took my husband along with me for moral support. Both expressed concern that my issues were related to my hormones. I explained the strains that my situation was causing within our relationship, my moods, the constant bleeding, painful intercourse, etc. Various unpleasant internal examinations took place (which later came back clear). My first appointment ended with me leaving in tears as my husband and I had basically been told again that my symptoms were related to stress – but this time there appeared to be some ammunition for this claim. His theory was that our relationship was being tested as we were newly weds, so I was suffering from stress and that was impacting upon my menstrual cycle. Explanation that these issues had been going on since my teens appeared to fall on deaf ears. I tried to explain that it was the bleeding, moods and other physical symptoms that were causing me stress but he appeared convinced it was the other way around.
So I gave up – returned home and came to the conclusion that this was just the way life was going to be. Learning to work around my bad weeks, I would try and avoid certain situations and only socialize if I had to. This had a huge impact upon my quality of life, I had also started my own business – something I was more than capable of doing and I had always wanted to do. But sadly the symptoms were becoming a lot worse – the insomnia and anxiety occurring every third week was debilitating as was the continued heavy irregular bleeding. I would become so upset as I felt so out of control of what was happening to my body and mind every month. But then the cloud would lift and I would be enjoying life again and functioning well until the next cycle. At this point my husband had really started to notice how intense things were becoming and supported me in every practical and emotional way he could – but he could not remove or understand the horrid pattern of symptoms that would come and then go. It must have been incredibly frustrating for him as half the month he had happy, confident, sensible Donna and the other half he had irritable, anxious, exhausted and paranoid Donna. Things came to a head in June 2004 when I was totally overwhelmed with anxiety – completely irrational and exhausted. I went to my GP who was shocked and could not understand what had happened, and how it happened so quickly. She had never seen me at this point in my cycle before as I was ashamed to admit that I was having mental health issues. She immediately did what would have been the sensible thing at the time and started me on Prozac. Sadly three or four days later – as things peaked I tried to take my own life. To this day I have no idea when I crossed the line between sanity and suicide. I can just remember thinking that I was such a burden on everyone, I was a failure as a wife and that my life was always going to be controlled by this horrendous pattern. I remember being in hospital and not believing what I had done, I was so ashamed of myself. Notes show that within a few days I was once again lucid, and hopeful for the future. I must have appeared very bizarre when the only reason I could give as an explanation to the psychiatrist was that my periods were causing me to have such severe symptoms. Again they put it down to stress and sent me home with different antidepressants – Efexor. These did help me, mostly with the anxiety but did not remove the physical problem of the heavy irregular bleeding. Sadly a few weeks later I received a letter from the gynaecologist stating that as I had been in hospital as a result of my suicide attempt, and they had found no physical cause for the bleeding I was being discharged from any further investigations at his clinic. His documented reason was that he was now certain my problems were stress related. Can you imagine how very frustrating and upsetting this was, when I knew deep within myself that something that was completely out of my control was ruining my life.
So thankfully being the strong person that I am I decided that this was not going to beat me. I got back to work, and returned to taking the contraceptive pill that had given me the least problems. The Efexor, after a few increases in dosage, kept me ticking along. I am delighted to say that the following year I fell pregnant with my first beautiful son. Efexor was stopped and pregnancy was a joy as I had no vicious cycle; however, after birth things went downhill fairly quickly. The anxiety and insomnia came back along with a few new symptoms including intense paranoia, confusion and sweats. By this time the monthly pattern was screaming out to me. I had a spell back on antidepressants as I was diagnosed with postnatal depression but they made no difference this time. Back on the pill until I could take it no more and asked for another gynaecologist referral. But once again I fell pregnant with my second beautiful son. So out the window went any further investigations until after childbirth. I will admit that I was scared of bringing another child into the world as I was just functioning at this point two weeks out of every month. Blair arrived and the symptoms returned with a vengeance. This is the point that I decided I could no longer live with this as I was beginning to get scarily low and did not want a repeat of what happened a few years previous. Some may argue that it was the dealing with two children that made things worse – but when I reflect back the only reason I could cope before I had the children was because I could literally lie down to this condition. That however was not an option with two children to care for, and on my two good weeks I was a fantastic mother, nothing phased me and life was good. My new GP was wonderful and recognized that my problems were hormone related and supported me to follow the guidelines published by the National Association for Premenstrual Syndrome (NAPS). We tried a few newer pills, then the Mirena coil but every time I had something with any amount of progesterone I would feel awful. Through charting my symptoms during a normal cycle it was obvious that they related to the days when progesterone was at its highest. We tried a combination of numerous things but with no success.
The moment my life changed was when I found a specialist gynaecologist who I believe saved my life. We decided to go ahead and try the gonadotropin releasing hormone analogue monthly injections to force my body into menopause and remove my cycle. After two months I was literally a new woman. I could not actually believe the difference in myself – and my husband was astounded. I no longer hated myself, I felt in control rather than out of control. The bleeding stopped, the anxiety and paranoia disappeared and I was functioning like a normal human being. The relief was immense. A few menopausal symptoms crept in but they were solved by using low-dose estrogen HRT. I used this regimen for six months. This relief, however, came at a cost. It was not advisable to stay on these injections long term; however, a hysterectomy and removal of my ovaries would give a permanent solution. At age 29 this was a huge decision but if I wanted to have any quality of life with my family it was the only option for me. Yes I had my children and probably did not plan to have any more but I hated having that choice taken a way from me by this condition. Anyway, I proceeded with the surgery and today I have no regrets whatsoever.
So here I am 2.5 years postsurgery. Hormones still challenge me as I am now in surgical menopause.
Menopause – believe it or not came as a complete surprise to me. I do not know if I just did not allow myself to think about it – but boy did I know when it arrived. I assume that because I entered menopause via surgery – it arrived like a tornado. The first thing that really disturbed me was the dryness and soreness of my vaginal area – and being a typical woman I put up with it – not wanting to bother the doctor with something as unimportant as my vagina!! Then I started to feel like I had just gone 10 rounds with a boxer – I ached, I was exhausted. At this point I was using 1 × 25 μg patch of estrogen every three days – when I look back know I laugh my head off at how naive I was. Understandably my GP advised me to stay on as low a patch as possible of HRT – and to be fair I kept a lot of my symptoms to myself – especially the vaginal symptoms. I eventually decided that something else must be wrong with me – and ordered some blood tests to check for infection, etc. They came back clear. At the same time I contacted my consultant again who explained to me that a woman of my age would normally have a lot of estrogen in her body – and that the HRT was simply replacing what I would normally have. She suggested increasing the dose of patches and adding in some local estrogen direct to my vagina. If I am 100% honest – I was not convinced but I went ahead anyway. I am pleased to say that I have never looked back. I have taken a great amount of time to educate myself about HRT, and it is very interesting and eye opening to read how flawed the study was that led to all the scaremongering around HRT. I was also amazed to read the amount of evidence that supports estrogen therapy in women – especially young women like myself. But sadly many doctors are still reluctant to recognize this. Thankfully I have a very good medical team now – they trust me and I trust them. I feel as is I have finally taken control of my hormones – rather than my hormones controlling me. I now speak at women's health conferences – helping to educate the medical profession about the very real effect hormones have on women – and I am pleased to say that they are starting to listen. Menopause does not need to be miserable.