Still experiencing post hysterectomy fatigue – Alison’s story

I am now 7 months 2 weeks after my hysterectomy and still experiencing debilitating post hysterectomy fatigue. I had an emergency procedure and was not well enough to have it having had such severe bleeding, anaemia and admissions for blood transfusions in the weeks preceding.

I was kept in hospital again on a third trip to A and E to stabilise a very high temperature and to have a hysteroscopy after a few days of being monitored. I had been given Gonadotropin on my previous visit to hospital a week before and we were all waiting for this to take effect (to stop the bleeding) in order to have a hysterectomy in a couple of months time. As well as fibroids they had also seen some other growths which had not yet been identified.

During the hysteroscopy my bleeding was so severe I was rushed into theatre there and then and had a vertical cut hysterectomy removing uterus, cervix, fallopian tubes and ovaries. This was extremely traumatic, I was literally being rushed along the corridors whilst the sister ran back to the ward to get my mobile so I could at least let one person know what was happening. The second I had said what was happening the phone was taken from me and the next thing I remember was waking up in post op. It was hugely distressing, also for the sister and nurses who were doing the hysteroscopy who had never had that situation before. They were running around trying to find gauze to pack me with, a surgeon, anaesthetist and then they didn’t think they could get the trolley into the room to wheel me to theatre. They have since changed their emergency procedures!

I am quite traumatised by the whole thing (as well as grateful) and waiting for counselling. I can’t have HRT as I had a pulmonary embolism when I was 22 and my GP has said it is too high risk. I am taking all the supplements recommended and thankfully have an excellent support network. I have had to start working again as I am self employed and my insurance didn’t cover this. My work is quite high energy (I am a singer/songwriter, community arts facilitator and choir leader) and I am now unfortunately often cancelling things because my fatigue is so severe. I have also put on a lot of weight but this is most likely because I am not moving about as much as usual due to days being horizontal and trying not to use up too much energy.

I have found that the only things that can sometimes temporarily shift the fatigue slightly are adrenalin when I perform or lead a workshop, extremely cold weather, and the sound of the bass tone in a djembe (African Drum). I find I am very drawn to deep male voices singing too (live) so there must be something about low vibrations. I think this would make an interesting study! Mostly I do not have the energy to perform and run workshops as I would normally however and would say I am running at a third of my usual capacity. This of course has a huge impact on my finances as well as networking and opportunities, and I have had to cancel work after not being able to deliver on the day, one time breaking down in front of a choir. I find that I cannot deal with any stress without becoming exhausted (just normal things) and I have been extremely emotional. I am thankful that my physical recovery from the operation seems to have been reasonable smooth although my abdomen is still sore often and seems distended. Something to do with the muscles I believe and bloating still from the post op.

The good news was that there was no cancer present which was of course everyone’s fear. Also I was grateful to be in the UK at home with the NHS on hand. The last time I became really poorly with this condition two and a half years ago I was working in Zambia had to fly home immediately as the doctor was trying to admit me to a local hospital which would have been extremely difficult to cope with (for them and me).

I had by the way been suffering with fibroids and severe pain and bleeding for over 20 years and had twice been on a programme of hormone treatment to induce medical menopause rather than have a hysterectomy. The doctors kept hoping after 50 I would just go into natural menopause after my last treatment, but unfortunately the fibroids kept growing back and the bleeding became severe again. I have tried every treatment possible.

So that is my story so far. I hope that it will help as you continue to gather research.

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