My story of infertility began when I was twelve and ended when I entered Early Menopause at thirty two years old. It was a laborious, debilitating, insightful and challenging journey to Menopause. My periods were a disaster from their onset at twelve until my uterus was removed twenty years later. Throughout my twenties I had many laparoscopies and associated surgeries to diagnose the root cause of my debilitating cycle. Endometriosis was a probable cause but I always knew the problem was more than that. I would lose more blood than I thought possible each month. The clots were immeasurable. I bled from the front and the back! My bowel was in chaos. The pain was excruciating and would often take an endless supply of Nurofen and at times, two hot water bottles to gain some kind of relief. My school, work, social and home life were always the victim of my disastrous cycle. Sex hurt, the PMS was so severe I didn’t recognise myself and each month I knew the onslaught would come and I’d rally each time. By the end of my menstruating years I was only having a good couple of days per cycle. They were like heaven and I wanted to feel like this permanently.
In my gynaecological history I have seen approximately three Gastroenterologists, eight or so gynaecologists/surgeons and in excess of ten GP’s stretching across the globe in Australia, the UK and Egypt. I have tried numerous forms of the pill, every natural therapy known to man but nothing made it better. I had problems mid cycle too. Ovulation would see me fly off the hormonal handle, I was excreting large amounts of what seemed like foreign bodies to me, perspective was lost and my eyes would almost cloud over, I could see but not focus. It felt like I had poison running though every inch of my body. For six months, when I was about twenty four, I had a course of medicine that stopped my cycle completely in an effort to trick my endometriosis from growing. I can’t remember the name of the medication but can still recall how fantastic I felt. All, and I mean all, of my gynaecological symptoms disappeared. The medicine was strong and as a result, six months is the maximum time you can take it for across your lifetime. I’d used my share and on ceasing the medication every debilitating symptom reappeared! Disappointed to be sick again, I’d tasted and felt what it must have been like to be ‘normal’ and the essence of who I am. I didn’t have to rally each month and fight through a cloud of darkness to function. I had tasted freedom.
My initial laparoscopy in my early twenties had revealed that my ovaries were enlarged, endometriosis scarring was present and my uterus was severely retroverted. The specialist didn’t seem to be too concerned and simply tried to treat the endometriosis medically. Throughout my twenty year journey I wasn’t doctor shopping for the fun of it, I needed to find someone that listened, understood and could help me. What I realised over time was that I knew my body best and my instincts about there being something else to try or to be done were right. I was determined to make a better life for myself as I was busy surviving every month. It was exhausting. I also learnt that each practitioner I saw and whatever their western or eastern speciality was, they gave me what I needed at the time or their incompetence pushed me in the direction I needed to go. I took my expectation off one specialist having all the answers and solutions and trusted myself instead!
In my late twenties, I continued to get sicker and even more debilitated by my cycle. I blamed myself for what was happening to my body and at times thought I was going crazy as many of my ongoing and severe symptoms were invisible! I soldiered on, somehow knowing it would end and I could be healthy. I didn’t realise that it would come at such great cost. By the time I was thirty one I’d had another colonoscopy, a polyp removed, my uterus moved to its right position and still there was limited relief. A bulging disc in my back was now plaguing me too. Due to my ill health and the advice of doctors I moved back to Australia from a stint overseas. It was crunch time – I’d exhausted every option I had to get better. My whole immune system was suffering too. I would lose so much blood at the time of my period that I’d pick up bugs and infections so easily. I often lost my voice exactly a week after my period. I remember having to miss a good friend’s wedding as my iron levels were at a crucially low level of five and I had a respiratory infection and a vomiting bug – all following a very bad period. By this stage, I had met my beautiful husband and watched him nurse me month after month. Our lives were now debilitated and unpredictable due to my severe hormone imbalance and exhausting period. I would become so irrational when ovulating and prior to my period and I couldn’t control it. Our sex life was affected as was our ability to enjoy a life full stop. My husband has always told me that he could see though my hormones. I don’t know how he did it. I knew that I had lost myself.
I decided to have a hysterectomy and remove my uterus. I was 32. I wanted to be well and knew there was no other option despite the fact we would lose our choice to have biological children. We were living in a new city and met with a surgeon I’d been referred to. In fact, the female GP that referred me told me in no uncertain terms that ‘I just had really bad PMT’. Er dur!!!! My husband accompanied me to the initial appointment with the surgeon. As we sat in the waiting room we filled out the appropriate paper work and were haunted by the hundreds of baby photos that were proudly displayed and seemed to be engulfing our being. The doctor was truly awful. My husband held my hand tighter and tighter as she forcefully quizzed us about the consequence of removing my uterus and becoming infertile. She treated us like we were idiots who hadn’t given this earth shattering decision some thought! The doctor, loudly and without warmth practically yelled – ‘What if you want to have a baby!” I said that we would adopt and her cold hearted response was ‘There are no children to adopt”. Charming! I think I may have also retaliated with you need to have sex to make a baby and currently it’s too physically painful for this to even happen. We were damned if we did and damned if we didn’t. She was also full of inaccuracies about the medicine options I had available. Needless to say I never went back to see her and funnily enough she basically indicated that she didn’t want to treat me. I’d experienced this many times on my journey to good health – medical professionals who couldn’t see that my health was my priority and until I was well, having a baby couldn’t happen for many reasons. Hormonally, I don’t think I could have done it to the best of my ability let alone the impact the expense of ongoing medical treatment, appointments and surgeries and the loss of income had had on us financially. We couldn’t afford a child right now!
So we trudged on and found another surgeon. Ironically, his office was across the hall from the previous one. After sending me to a trusted colleague for a second opinion it was agreed that there was no alternative left but to remove my uterus. So one week short of our first wedding anniversary that’s exactly what happened. Words can’t describe the pain of the loss or the trauma. My husband was as stoic as always. I was calm and ready. Dealing with other people’s reactions including the nurse who took my blood before the surgery was harder at this point. I was lying in the hospital bed, ready to go for surgery. My husband and I were sharing a joke and trying to be as buoyant as we could be, the nurse interrupted to take my blood and in a sarcastic tone, said “Looks like you’re having a good time today.” I replied very hastily stating that today was a really hard day for us and we were trying to be as positive as we could. In other words – get lost! People just don’t get it or sometimes I think that they are simply afraid and say dumb things or offer you a solution that makes them feel better i.e you can adopt, what about surrogacy! Oh please, do they think that we haven’t looked at all options and perhaps just need to get through the trauma and loss at hand? I’ve learnt to remove my expectation of others understanding our situation. It hurts less that way and saves a whole lot of energy! I remember that we were at the hospital waiting to be admitted – theatre was running late. There was a park nearby and so we went there to get out of the hospital walls for a while. My husband and I sat under a beautiful old tree and we chatted, laughed and held each other tight. This gave me hope and strength.
The last goodbye before surgery is never a good one. We did our best and again wrapped ourselves in the unconditional love and hope we share and knew that this would get us through. The surgery went well. I was transferred to the maternity ward. Yes, that’s right, the maternity ward. I thought there had been a mistake. I awoke in and out of my post anaesthetic state that first night to the constant cry of a newborn baby. It was truly criminal. Unbeknown to me, the hospital had a ridiculous policy about women caring for women. Great idea but not on the level of baby versus infertility! At 3am, post surgery, the lovely nurse looking after me, woke me up and empathetically asked if I had seen the note from the doctor regarding the surgery findings. I read it with disbelief –Adenomyosis had been found. I had read about this condition some time ago. It was described as unwanted growths like endometrial deposits inside the lining of the uterus and associated glands. From my research I also knew that the only way to diagnose it was through a hysterectomy and the only way to treat it was a hysterectomy. My instincts had been right. I waited a long couple of hours to ring my husband at a decent hour to share the positive outcome, the relief was extraordinary – we’d done the right thing. No, it didn’t take away the pain or the sadness but grief like that is much easier to bear when you know there was really no other option!
I had assertively requested that my surgeon take my ovaries at the same time as my uterus. I instinctively felt that they weren’t right either. He refused and I understand why. He felt I was too young to go into Menopause and wanted to see the outcome of removing my uterus first. The surgeon had mentioned that if I wasn’t fully better post hysterectomy that he would consider taking one ovary. I spent approximately six weeks at home recovering from my surgery and found great solace and support from the website www.hystersisters.com. The first three weeks after my surgery were particularly fantastic. The pain was manageable and I felt the best I had in years. Then it changed like a switch. My ovaries had been in post uterus removal shock and three weeks after surgery I physically felt my hormones turn back on and flood my body with that toxic feeling like they always had. I was devastated. I knew that the problem had now been isolated to my ovaries as my uterus could not be blamed any longer. So essentially I’d had two gynaecological issues all along and by process of elimination knew there was still one to be solved. My husband assured me that it was the early days of healing and it would be okay but that feeling of being hormonally out of control was all too familiar.
We returned to the surgeon for my post hysterectomy appointment. I had experienced a bladder infection during my recovery and seen the local GP for this. My surgeon was pleased with how the surgery had gone and that I was healing well. I shared my concerns about the hormonal/ovary symptoms I was experiencing and he didn’t seem to be bothered. My abdomen had been swelling on and off for a while and I mentioned this as we departed the appointment. His closing words were ‘That’s because you’ve been eating too many meat pies!’ Yes, I had put on some weight during the last few years as my illness had worsened but this was different – my abdomen was varied in size each day and at different times of my cycle. I realised he had done his job re my uterus and could offer no more. It was time to move on.
I was getting desperate. My energy wasn’t returning and I was still experiencing significant and debilitating hormonal symptoms. The good news was that the removal of my uterus was a wonderful success and not having a period had eradicated many other yucky symptoms. In fact, I forgot that you were meant to even have one each month. After years of being ruled by my cycle, half the problem had been solved but I knew there was more to be done. A friend saw that I was still struggling and validated that I shouldn’t be living like this. Fortunately her sister worked for a gynaecologist (ironically at an IVF Clinic) and my next step towards health was set in motion. My new specialist was very supportive and listened to my story. He acknowledged that removing my ovaries was a huge step but he was willing to have a ‘Menopause’ trial, to see if it was the best option. I was now in for a few more months of medical trial and error and further sickness. I was just hanging on. It was about five months after my hysterectomy. I had been on anti depressants for sometime as a particular type is said to help with PMT symptoms. I didn’t find them to be especially helpful and in preparation for the medicine I was to take for my Menopause trial I began to wean myself off them. For about two weeks I was so sick I truly thought I was going to die. I was ovulating at the same time as coming off the tablets. I was hormonal, constantly dizzy, anxious and I couldn’t hear properly or gain my balance. The world was swimming around me. I could do nothing but lie still and cry! My husband took me to a local doctor and she thought I might have a brain aneurism – thank goodness it turned out that I didn’t. I once came across a description of PMDD (Premenstrual Dysphoric Disorder) on an episode of Law and Order! Whether I had it or not I related to the list of symptoms and seemed to be experiencing every one of them during this time. Even though I was no longer having a period, I still had a cycle because of my ovaries and felt every minute of it!
Once I was off the antidepressants, the time came to begin my Menopause trial. I was to use a nose spray similar to that of an individual participating in the IVF process, to turn off my eggs. It was one of the most gut wrenchingly sad nights of my life. I knew I was turning my eggs off for good and while I still had eggs, there was still a chance to create a life! I had desperately wanted to donate my eggs to people in need of help to have a baby. I offered them to two separate women both trying to conceive but in the end I was too sick to go through the process. I was devastated. So this particular night, I lit a candle in our bedroom, sat alone on our bed, said my goodbyes and administered the spray. Slowly over the next few weeks my ovaries stopped functioning and I began to feel better. For me, the decision to operate had been confirmed. The Menopausal symptoms I experienced were minor and I began wearing a low dosage oestrogen based HRT patch. I was accidently given a higher dosage a couple of weeks before my operation and it nearly sent me hormonally crazy again. It seemed to me like I had a hormone sensitivity and if the balance of oestrogen wasn’t right, my symptoms would return. I also recalled the initial observation from my first surgery about my enlarged ovary and wondered if there was a connection.
I had regular appointments with my new specialist during this time and each included an internal scan (fun, fun). The first time this happened, I looked at the screen and there was huge black hole where my uterus once was. I hadn’t been prepared to see this visually. It looked so empty and broke my heart. During the initial scan, the surgeon found a massive cyst in one of my ovaries. It was huge. I didn’t blink an eyelid. At least we could ‘see’ a potential problem and I didn’t feel like I was the one going crazy! After a few months, the doctor agreed that the Menopause trial had been a success and removing my ovaries and putting my body into Early Menopause would bring me a much better quality of life. Surgery was set for June 4th – 7 months after my uterus had been removed. The surgeon and I decided to remove my cervix too. So many yucky things had grown down there due to oestrogen dominance; I didn’t want to take the risk with my cervix. The added bonus was that I wouldn’t have to have any more pap smears! Another tough decision to be made was whether or not we would freeze any of my eggs. My husband and I didn’t spend a lot of time thinking and talking about it. Quite frankly, we couldn’t afford it. Neither my husband nor I had ever had a huge desire or need to have a family with our genetic traits. I also wanted a clean slate and this part of my life to be over. I didn’t want to have the frozen eggs hanging over me. When you lose your uterus, the grief is black and white, you can’t carry a baby, the choice is gone. Freezing the eggs would create another area of grey for me and I’d already been through too much. It would have kept me stuck.
The surgery was a success and again I was placed in the maternity ward (despite the fact I asked not to be and was a private patient paying for my stay). The reaction and support of people in my life was really different this time round. I assume they thought that losing my uterus meant losing the ability to have a baby naturally and the grief with that was obvious. The visits and flowers at that time were endless and greatly appreciated. The opposite happened when I had my ovaries removed. To me people’s reaction generally was like me having my tonsils out. I actually found losing my ovaries as hard, if not harder. I think this was because of the whole loss of eggs and loss of creating life aspect. I also suspect my peers didn’t understand the medical and physiological impact of being in Menopause twenty years before my time. The considerations I’d have to make about HRT choices, what I’d need to do to keep my bones strong and the changes I felt in my body or the potential impact on our sex life. Home and recovering from surgery, the intense symptoms of Menopause began. Hot flushes are something you can’t describe unless you’ve had one. There not like a little sweat from being out in the sun too long. They are like an intense rush of volcanic heat that comes from within you and rises through your neck and face. Nothing can cool you down in the moment. Night sweats are the worst. Cover on, cover off, cover on, cover off. I also had some joint pain, anxiety and noticed that the size of my labia had changed (something people don’t tell you about!!!!). I really didn’t want to take any HRT as I’d had such hormonal sensitivities in the past. However, after much research I knew I needed some oestrogen to take care of my bones and prevent osteoporosis. So I started on a low dose of a patch that agreed with me – Estradot and over time increased the dosage until I found what worked for me and stopped the symptoms I was experiencing. I also started having fish oil daily to help with minimising joint discomfort. I only get slight hot flushes now with a glass of champas or vodka!! I only needed oestrogen replacement as I don’t have a uterus and now also use an oestrogen based pessary and cream on the outside of my vagina to keep me lubricated for great sex!
My post surgery visit to my specialist occurred a week or so after the operation. I was expecting the results of the biopsy to not show much. I had accepted that the problem with my ovaries may have been ‘invisible’ and that for some reason the sensitivity I experienced with oestrogen etc could not be seen. I was therefore incredibly surprised when the results from the pathology that had been taken from my ovaries and cervix highlighted that my cervix had some scarring from my hysterectomy and wait for it……. both of my ovaries were littered with many, many cysts! I knew it! It wasn’t me going crazy! Again, the relief I felt could not be explained. I’d taken another huge risk with my body and the evidence had again presented itself post surgery! I was incredibly grateful that the cysts were not cancerous. I asked the surgeon if he thought I had polycystic ovaries and before he could answer I interrupted to say, “You know what, it doesn’t even matter. They’re gone now. It’s over.”,
I continued to heal over the pursuing months and was feeling better and better. The only two symptoms that hadn’t improved were my weight and energy levels. I had always been slight and put on about 20- 25 kilograms, particularly around my abdomen, in the last few years that I’d been unwell. I was also incredibly tired no matter what I did. A blood test by a GP indicated that I had an underactive thyroid (Hypothyroidism). Further tests revealed that I had Hashimoto’s (I like to call it Hashi’s for short). It’s an autoimmune condition in which your thyroid is basically being eaten by your body. I was devastated! Not so much because of the Hashi’s, it’s easily managed with a daily thyroxin tablet for the rest of my life, but because I had removed the organs of my womanhood and there was still something not right and more to deal with. The Hashi’s explained the energy difficulties and the weight gain. In hindsight, I suspect I had it for a while but with everything else going on with my body it was mistaken as being part of the uterus and ovary issues. My energy levels continue to improve although I have to minimise stress and overdoing it but the weight gain is yet to be sorted. It has stabilised but my metabolism has not returned to normal. This can also be a symptom of Menopause. The only other hiccup since my last surgery has been some scarring that I had grown following the removal of my cervix and was causing me to spot bleed. It was easily fixed in the doctor’s chair and burnt off with nitrate.
It’s just over a year since I officially entered Menopause with the removal of my ovaries! I feel FABULOUS!!!!! Menopause made me better so for me it has been a very positive transition physically. Emotionally, things have been tougher. I can easily do the symptoms of Menopause, being infertile is the hardest part. We live in a parenting world, my friends and peers are all at the age where they’re having babies. People don’t get what it’s like to be infertile. I have had the most insensitive things said to me and been part of conversations that would blow your mind. Even if my husband and I decide to adopt down the track, that doesn’t take away the significance of the loss we have already experienced. I suspect it’s like offering an amputee a new prosthetic limb – it doesn’t take the loss and trauma away and adaptations to life need to be made. Living a childless life may well be an option for us too. People don’t seem to understand that but I believe you always have a choice and we are choosing to make the best of the circumstances life has presented. The grief has been heartbreaking. The first anniversary of losing my uterus and then the year marker of my ovaries going was like reliving a death in the family all over again. You don’t ever get over such a loss but you do learn to live with it. Life does seem brighter. I can now hold a baby or play with a child, return them to their parent and not have an emotional or cognitive response about my infertility. It has taken a long time to get to this point and feels very freeing. Don’t get me wrong – the day to day world is full of happy families and babies at the shop, beach, social functions etc and there are moments when it still feels sad and I’m sure that’s how it will be for a long time, if not forever. I’ve learnt to take expectation away from people who don’t get it and distance myself from situations and people that make it too much harder than it already is. Instead, I have tried to connect with women who do. Seeing a psychologist regularly has also helped immensely with my healing. I was fortunate enough to recently attend a weekend away with the NZ Early Menopause Support Group. Ironically, it fell on the first anniversary of me entering Early Menopause. Being with thirteen other women who all had a different story about how they had arrived at Menopause prematurely was amazing. All of them had felt and understood the pain of the loss and how hard it is to live in a parenting world. The grief is really about the loss of choice. The weekend away with these inspiring women changed my life. I was no longer alone.
I’m lucky. I have a beautiful husband who I adore. He is still fertile but has made the commitment to live a life of infertility with me because our love and relationship means more. My organs weren’t cancerous. We didn’t have to travel the heart wrenching and roller coast ride that I imagine IVF can be. Menopause has made me happier and healthier than I have ever been. I read once that being in Menopause albeit naturally at fifty two is a time of cleansing for many women. They often become empty nesters at this time, relationships are given a stock take, they explore new passions and interests and have more time to self care and build a life post raising children. Emotionally, this has been true for me in many ways. Friendships have changed, many have drifted away. My marriage, after many traumatic years of being sick is taking on a new direction. I’m making new career decisions and ridding myself of thoughts and behaviours that no longer serve their purpose. I’m closing and opening doors that I never thought possible. Did I ever think that at 32 years of age I’d be in Menopause and unable to have children naturally? Of course not. But I’ve learnt that the only control I have is to choose my own responses, thoughts and feelings about the trials and tribulations of my life so I decided to embrace Early Menopause the best I can. The one thing that kept and keeps me going is hope. I remember visiting the Hystersister website one night in my darkest hour, desperate to connect with someone who understood what I was going through as I tried to make the decision about removing my ovaries. I went to the forums and found threads from women in similar situations to me – they were all in Early Menopause and both their uterus and ovaries had been removed. They were young, some had children, some didn’t but their words were full of hope. They had healed, were physically feeling better and were getting on with their lives. I printed off two A4 pages of comments. I pasted them on coloured paper and entitled it Hope! I carried it with me in my handbag and read and reread these women’s words daily with a great sense of comfort. This is exactly why I have started the Australian Early Menopause Network – so that you too can be filled with hope and to know that somewhere out there in the world of cyberspace someone else understands and is willing to share the highs and lows of your Early Menopause journey with you!
Taken from excerpts of unsolicited ‘When Becoming a Mum is Hard’ by TMD.