January 16, 2018

Diane’s Story

In April 2012 I hadn’t given menopause a second thought. I was only 45.

Twelve months later I had become completely consumed by it.

I hadn’t felt great since January, nothing I could put my finger on I just felt tired all the time and had no energy. I reassured myself that lots of people felt the same when the days were long, dark and grey. Spring began to dawn and I felt worse not better, I had always loved walking my dogs early in the morning but even that had become a chore. At the time my husband and I had just finished renovating our house and I was running an internet business and my equine therapy business so my days were always busy but I began to find them exhausting. It wasn’t just my physical health that was causing me concern; I had started to feel quite anxious and emotional and was finding it increasingly difficult to cope with everyday life.

My husband finally persuaded me to visit the doctor in April (I rarely visited the doctors) when I saw her I explained how tired and lifeless I felt and she suggested running some blood tests, when I got the results a few days later I was very anaemic. I had suffered with very heavy periods for several years but had never visited the doctor; I thought it was just part of getting older. Actually when I looked back I had probably struggled for over 10 years and most months I would be confined to the house for one or two days. The doctor gently reprimanded me for not bringing that to her attention sooner, prescribed some iron tablets and told me to return if I didn’t feel better in a few weeks.

Well I didn’t feel better, in fact I felt worse, so more blood tests were run and when my phone rang on the following Monday lunchtime I guessed she’d found something. The doctor explained that my CA125 had risen from under 30 to over 80 in just a few weeks, CA125 is a protein found in the blood which is produced by some ovarian cancer cells although it can be raised in other pelvic conditions. I was familiar with CA125 as my mother had been diagnosed with ovarian cancer 22 years earlier. I was booked in for an ultrasound scan; on the day, the sonographer, who was lovely, took my hand at the end of the scan and said ‘I am sorry my dear but there are several growths on both ovaries and a large fibroid, you need to see a gynaecologist urgently’. I had been convinced that the scan would be clear and I can still remember walking down the corridor hand in hand with my husband telling him what had been found with the tears streaming down my cheeks.

Thankfully my GP had pre-empted the results and I had my first gynae appointment the following week. My scan results and family history were discussed along with my most recent CA125 which had now risen to 118. My gynaecologist explained that it might be ovarian cancer but there could be other possibilities and she would like me to have an MRI and a CT scan to see if anything else was going on.

When we met again about 10 days later she explained that the other scans were clear and it had been decided that the safest option would be for a TAH and BSO a total abdominal hysterectomy and bilateral salpingo oopherectomy, she explained that keyhole surgery, removing just the ovaries, ran the risk of shedding cells which would be a disaster if cancer was diagnosed. At this stage I just wanted the operation over and done with as soon as possible so that I could get well and get on with my life. I was booked in for urgent surgery the following week and so on the 21st of July I had my hysterectomy.

My gynaecologist visited me the following day and told me that the operation had been longer and more difficult than expected due to my severe endometriosis. Unfortunately due to the lesions that the endometriosis had caused my bladder had been cut during the operation (that explained the bag attached to my leg!) but having seen the growths she was as confident as she could be that the op had been performed just in time!

All I had to do now was to wait for the lab results and concentrate on getting well, as I had no control over the lab results I focused my attention on getting out of hospital and going home. I was determined to go home as soon as possible so I really pushed myself (very carefully!) to shower, dress and take a short walk unaided, I persuaded the nurses that I would be fine and so having been reassured that my catheter would be removed two weeks later I left the hospital for the comforts of home two days after my operation.

The lab results arrived about ten days later and I learned that along with the endometriosis and fibroid I had been suffering from a condition called adenomyosis however, the most important point was that no malignancy had been found. I considered myself to be very fortunate and thought I had cracked it, how wrong can you be!

The hot flushes began almost immediately but were not too bad to start with, I had read a lot about surgical menopause and the symptoms to expect and the various treatment options. The gynaecologist had advised that I should see my GP two weeks post surgery to discuss HRT, I had already decided that I did not want to take HRT as I was aware that it was produced using conjugated equine oestrogens derived from pregnant mares urine and I knew how cruel that practice was and wanted nothing to do with it. I had already researched a natural menopause clinic and had decided to visit as soon as I was able, at my first appointment with the nutritionist I was prescribed several herbal remedies and assured that these would help with my symptoms.

In the first few weeks after surgery everything was going well and I was even strong enough to attend the Paralympics, what better incentive to get up and about. Six weeks after surgery I was back in the office and in October I was able to get back to doing what I loved; treating horses. I had told my GP that I intended to follow the natural route and although she didn’t agree she said she would support my decision and following a very positive dexa scan result she knew I would not be swayed. By September I had been able to come off of the very low-dose antidepressant that she had prescribed leading up to my op and I was really looking forward to the New Year.

In January 2013 things went very wrong very quickly; I seemed to lose my confidence overnight. I became increasingly anxious, my heart would pound, I couldn’t sleep, and my poor husband had his sleep disturbed every night. I became very emotional and eventually things became so bad that I was scared to go to bed and scared to wake up. Sometimes I felt so heavy that I just could not get out of bed and on my worst days it would take me three hours to get from the bed to the shower. I had never experienced depression before but each day felt darker than the last and dragging myself through them felt like wading through waist deep treacle. When my insecurity became so debilitating my husband had to call my mum to come and stay with me, often I would wake at three or four in the morning with my heart pounding out of my chest and to avoid disturbing my poor husband again I would creep in to see my mum who would just hold me and let me sob.

I could see no future and I was sure that nothing would ever be good again, I felt so useless and hopeless, a complete failure and a waste of space. I simply couldn’t cope; all I wanted was to be transported from my current situation where I felt that I was drowning to a peaceful place where I could just be for as long as it took with no pressure to do anything. I felt as though I would never be myself again and that I had lost my joy. I continually worried about the future and whether there would be one, I felt sad, frightened and lost. I was unrecognisable; my work was suffering which was added pressure for my husband and our financial situation, something else to worry about! I had become almost reclusive avoiding seeing friends and even avoiding telephone calls, I couldn’t even face going to the shops on my own.

What made all this worse is that I have always been the type of person that friends come to in a crisis, I am the strong, sensible, level headed friend who can always be relied upon to find a solution to a problem, where the hell had she disappeared to?    

Both my husband and my mother tried to persuade me to go back to see my GP but I refused repeatedly, I was so terrified of being prescribed antidepressants again. I made another appointment with the nutrionist and had really high hopes that she would have the answer but as we sat in her office she began to flick through a book for answers and at that point I completely lost hope.

I had decided that I really wanted somebody to talk to about all this and I found a local counsellor and coach who I could share all my fears and anxieties with, all those things that I couldn’t even tell my husband and it did help. Around the same time I began to investigate online forums to see if anybody else felt like me and I was shocked at the amount of people who were experiencing similar feelings, I clearly remember one post from a man written at 2.30 in the morning which simply said ‘can somebody please help, I think my wife is going mad.’

I decided to call my GP surgery to get the contact details of our local menopause support group, it took me a long time to pluck up the courage to make that call and when I did the receptionist simply said,’ I am sorry but there isn’t one’. What! How can that possibly be, approximately half of the population are going to experience menopause at some point in their lives and there is no support group! I made a promise to myself there and then that if and when I ever felt like my old self again I would do something to change that.

One morning, soon after, when I was completely inconsolable unbeknown to me my husband went in to our doctor’s surgery and booked an appointment with my GP for that night, she was so kind. When I finally managed to sob my way through the details of the last few months she said ‘ok so you have tried it your way, would you let me help now’. I was so desperate but still determined not to use a product derived from horses, it was only at that point that she told me there was a plant based alternative called Bioidentical.

My doctor explained that I had now completely run out of any reserves of oestrogen that had been stored in my body and that no amount of herbal preparation could possibly replace that. I was so relieved to know that there was something I could use, it was only later once I started to feel better that I started to question why nobody have ever given me the information about bioidentical and estrogen depletion before and then I was angry!

It took just 48 hours for me to start to feel better, the improvement was dramatic, the clouds lifted and I quickly began to feel like me again. Things went well for several months until I started to experience broken sleep, heart palpitations and anxiety. I did some research around these symptoms in conjunction with menopause and the evidence pointed towards a lack of progesterone, as somebody who had been diagnosed with severe endometriosis I also learnt that I should not be using unopposed oestrogen, which I had been since starting HRT. I went back to the doctors but I could not see my regular GP and the doctor I saw seemed unsure about the link with a lack of progesterone, instead he sent me off to the hospital to see a heart specialist. I was convinced that it wasn’t a heart problem and was annoyed as I ended up taking up two appointments that somebody with a real heart issue could have taken. As expected my heart got a clean bill of health but I was still struggling with a lack of sleep and palpitations. I returned to see my own GP and asked for a referral to a specialist menopause clinic, she reluctantly referred me and the appointment arrived in the post, for four months time!

When my appointment finally arrived I was exhausted from lack of sleep. The doctor listened patiently to my story and then pronounced that progesterone was a horrible hormone and she would not prescribe it. I was offered a blood test to check my oestrogen absorption and the doctor suggested that my own gp consider prescribing a very small dose of testosterone. I left the appointment feeling confused and upset, I had read so much that clearly indicated that oestrogen only hrt was not appropriate for those who had suffered with severe endometriosis as it was possible that the oestrogen could stimulate any remaining endometrial tissue. Endometriosis can only be treated with surgery and I really did not want further surgery.

I spoke with my own doctor once again and she insisted that she could not prescribe progesterone so I decided to contact Dr Heather Currie via her Menopause Matters website, I explained my situation in an email and within a few days I had a reply to say that I absolutely should be given progesterone and that it was indeed indicated for hysterectomised women who had suffered with severe endometriosis, she advised that I should return to my doctor with her reply.

I finally received my first prescription for progesterone in June 2015, almost three years after my surgery. Within days my sleep had improved, my heart palpitations had disappeared and my anxiety had improved dramatically. In September I visited outgoing chair of the British Menopause Society Nick Panay at his clinic in London for a private consultation to reassure myself that my medication was now correct, Mr Panay ordered a full hormone profile (the first I had been offered since my surgery) and I am now a patient at his NHS clinic at the Chelsea and Westminster hospital.

Has all this changed my life? Yes!

The events of the last four years have made me reassess everything, life is short and time is precious. I sold my internet business, I still treat horses, I have always loved them. Many years ago I studied counselling and my experiences made me want to revisit that so I went back to studying counselling and coaching, I qualified as a therapeutic coach in April 2014 and now work in private practice. I joined the British Menopause Society and attended their nurse training on menopause to update my knowledge. I am very proud to be the lay spokesperson on menopause for the Royal College of Obstetricians and Gynaecologists and an ambassador for the British Menopause Society. I have been interviewed several times on TV and radio in those roles. I have kept my promise to myself and although its taken four years I have now created the service that I wanted to access on the day I rang my own GP surgery.

You are not alone, I am here to help you, I look forward to supporting you.