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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  1. It has been reported by some women that it can take up to two years to fully recover from a hysterectomy, and that fatigue is the most common post surgical complication. It might be an idea to accept that this is how your body is for the moment and see if there are things you can do to support it, rather than trying to fight it 🙂

  2. I had a full hysterectomy but kept ovaries as I was 44 at the time(6 months ago) I was told the fatigue would lessen but as I am returning to work as we moved and I just got a new job I fear not being able to stay awake. I am trying to figure out how much coffee I can drink in my day so I do not pass out. I work a desk job that is pretty intense and I need to be alert and attentive with my clients. I think I will have to plan walks too. I do not want to have to quit working due to this. Did not know the uterus was so important to the body to keep you going. Cannot find much research into the why of this and it seems like doctors do not know why either.

  3. So sorry to hear how you were rushed into surgery. I’ve been traumatized from all the stuff that happened during recovery and the change to my orgasms, or lack of. Anyway, I found many interesting articles on ovarian cysts (which I had) and Iodine. I did a skin patch test as I couldn’t find an doctor to would test me. Since the Iodine quickly desolved into my skin, 6 hours, I knew it was low. Only then did a doctor test me that confirmed it. I started taking one drop of Iodine and got such a surge of energy I couldn’t believe it. After a while I started taking two drops and the same thing happened but not as much. I’m now taking three drops and my energy level is better, I’m not as tired or depressed. Look up ‘skin patch test for iodine’. Basically putting a 1″ square of household Iodine, like you use for cuts on your arm and seeing how long it takes to disappear. Maybe your Iodine is ok but it’s an easy way to check. Unless you can find a doctor right off to give you the one vial blood test. It’s just an idea about helping with your low energy. I still don’t have the energy I did pryor to surgery even with the Iodine, it’s been two years but it’s much better.

  4. This is so interesting! And with perfect timing, too, as I am up at 3am reading about hysterectomies and back pain. I play djembe regularly at our church and I feel this is one of the few things that when I do it, it truly makes me feel I am “alive”. I would love to research the way the sounds played by the ancient Israelites in the music on the way into battle affected their energy level.

    As for now, I decided to ignore the Obgyn doctor who ignored my back pain concerns by saying “try doing stretches” – Really, doctors love to say not to Google your own medical concerns, but then give you the most lame, top-search results advice that comet up on web searches… So I went to a different doc, a pain doctor who actually takes my problems SERIOUSLY.

    We are still working on finding an effective treatment.