My journey to a hysterectomy....and beyond. Part 1

It has taken a long while to get to this place. This place where a decision has been made to go ahead and have my womb removed. I have tried everything to avoid this and was horrified at the beginning of the process that this was even on the table as the only, “complete” solution. I have limited experience of surgery and I don’t mind saying that the prospect scares me. This is major abdominal surgery. The recovery will take time I know, but there are risks and implications from this procedure that will affect me for the rest of my life.

It started in 2015. I was 49 yrs. old and as I approached 50, several things started to unravel. I was swim training twice a week and going out mountain biking with my girlfriends. However, no matter how much I trained I was just going backwards, left exhausted and gasping for air after just 100m in the pool. Being left behind on the slightest incline on the bike. This aging thing was way worse than I ever imagined. Then on holiday I bashed my leg and it got infected. My leg swelled up like a balloon and on returning to the UK the doctors prescribed antibiotics and eventually it cleared up. However, my leg was still swollen, and I was getting really breathless just walking up the road from my house. So back to the doctors fearing some kind of heart condition… as you do. Thankfully no, just severe anaemia. Now everything made sense. I had been running on empty for many months. No wonder everything was so very, very hard.

I have always had heavy periods and fibroids were identified in the late 90’s following my last anaemic phase. Gently the doctor suggested that maybe a coil would be the way forward. I chatted to girlfriends and heard miraculous stories of miniscule to no bleeding. A life free from periods. Wow! That was beyond enticing. It gets fitted in January 2016. There might be some minor bleeding she says, and it can take a 4-6 months to settle down.

My body rejected the coil in less than 3 months and the nightmare of what followed came to be my new “normal”. The bleeding was so horrific that I made numerous phone calls to the NHS health line, to the doctors. I even took myself off the A&E twice. How can this be right? What the hell is going on? That time I bled for 3 weeks. Occasionally like a normal period but mostly torrential, haemorrhaging flows. The ones where you stand up off the loo and immediately have to sit down again and change. You might just as well just sit on a bucket. Terrifying, emotionally and physically exhausting.

Thankfully, I have never had a 3-week period since, but the haemorrhaging like flows continue usually for 3-8 hours at a time, if I am very lucky once a month but more likely 3-5 times during my period. There is no predictability only the slim shield of meticulous forward planning. A full change of clothes, a careful mapping of toilet location or more often than not the postponement or rearrangement of anything that takes me outside of my home. Thank the heavens I stopped commuting up to London 5 years before. I would have lost my job if I had still been working in London, no question about it. The daily commute would have been utterly impossible. As it was I was working in clinics in Crawley and Haywards Heath. Sometimes I would have to excuse myself 2-3 times during an appointment. On one or two occasions I had to cancel during an appointment. Simply unable to go on.

Gradually through 2016 it got a little better or maybe l just got used to my new normal, reframing my life to cope with this monthly onslaught. I was referred to the gynaecologist and here, before my bum even touched the seat, she said, “ Well the only complete solution is a Hysterectomy”. This angered me greatly. Surely it was the hormonal disruption that the coil had caused? My body just needed to recover from this. I have been told over and over again that the coil does not cause this type of heavy bleeding, but I have spoken to numerous women that report similar experiences. The medical profession says there is “no evidence” but as you stand in blood-soaked clothes, exhausted and bereft and angry that the truth of your own direct experience is seemingly inadmissible as that evidence.

What are the other options? Ablation, embolization, myomectomy. So, we start with a hysteroscopy (that’s a camera up your lady parts). We will have a look and see if an ablation is possible. Ah no, your fibroids make your womb an irregular shape so that won’t work. It looks like you have a polyp. Let’s see if we can remove it and solve all your problems and I think it would be a great idea if we put another coil in. Clearly your GP did not do a great job of positioning it and that is why it came out.

In the meantime (December 2016) I was went to see a hormone specialist privately up in London. I had been feeling so low, so lacking in resilience, so empty. I remember that consultation very well. She asked me a very simple question. “When was it that you last felt great?” As you scroll back through the years searching for that memory the hot tears start to roll down your cheeks as you struggle to find that place.

Two powerful things happened in that consultation. Firstly, I was truly heard. Secondly, she did a blood hormone panel. The results of which showed that my oestrogen was very high, and my progesterone was very low. Bioidentical progesterone was prescribed and within a few weeks I went from a flat empty tank to having capacity and a bit more resilience once more. Sadly, however there were no improvements in my bleeding symptoms although she recommended I look into dietary and lifestyle changes to produce some long-term changes in my hormones.

So, in March 2017 another hysteroscopy. Ah no, it is not a polyp but a fibroid and these tools are not able to cut it away. We will put the coil in anyway. You will need a hysteroscopy under general anaesthetic so that I can use bigger tools to cut away this fibroid. This time the coil lasted 5 days and here we go again with the horrendous bleeding. Not as severe this time but major events have to be rearranged. Again, life has to bend itself around this new normality.

The hysteroscopy under general anaesthetic is scheduled for late December 2017, but my faith in this course of action is dwindling rapidly. Each time the consultant is convinced his approach will work and each time it does not. It was no exception this time.

So finally, I take the hormone specialists words to heart and begin to look at diet and lifestyle. By pure chance I find a Functional Medicine practitioner just up the road from me. In December 2017 we run a battery of tests and in January the disparity between the oestrogen and my progesterone gets targeted with vengeance. A hardcore diet to balance my hormones in underway together with a battery of supplements to support my system. I come off sugar and carbs. My vegetable intake goes through the roof. It’s a struggle, especially the first 4 weeks, but then I can look at bread and cakes and not act like a drug addict around them. But the path to health is not even or even straight. I have a couple of improved periods and then back to horrendous ones and so it has continued. We have tweaked and focused and heck, I even lost a couple of stone and brought my oestrogen back into the realms of normality.

None of this is wasted, it is all good stuff, BUT even with all of this effort my symptoms are essentially unchanged. With each period you hope against hope that it will get better, but it does not. In addition, I suffer a week of dizziness and breathlessness each month as my body tries the right itself after each dramatic blood loss. This has started to have a profound effect on my mood. In truth, it crushes me. Every month. I search for the slightest glimmer that things have improved, and my hopes are dashed.

Now, I sit here on the last day of my family holiday typing this in a cabin in the French Alps that I can’t leave because even though it is the last day of my period, the haemorrhaging started again this morning. The family have gone up the mountain with their bikes for the last time and, like most of this week, I have not been able to join them.

I have tried, God knows I have tried, but I am done pretending that I can somehow change this thing that has gone too far. It is time for the complete solution.