Update after hysterectomy for adenomyosis

[mavenmi]

I posted here just over a week ago with the background and my pre-operative anxieties: healthunlocked.com/endometr... so I thought I'd update.

When I went in to hospital I was still quite ambivalent and fearful. But when I talked to my consultant he said "even if you had no symptoms I'd still recommend the hysterectomy medically" which set my mind at rest a bit. Everyone was really nice and made me feel well looked after. I woke up to find they'd managed to operate laparoscopically, had no complications and found nothing to cause additional concern (eg endo, adhesions or ovarian cysts) so he was able to leave my ovaries. I was in hospital for two nights, the second was at least partly by choice (as I could have pushed for an early discharge but didn't, given the sub-zero weather and our childcare arrangements).

To be honest the pain wasn't that bad. It was like period pain combined with some localised bruising. I felt super relieved that things had gone so smoothly as I had convinced myself I was going to need the open surgery, and that I'd wake up in agony. I slept a lot and didn't need pain relief stronger than paracetamol and codeine every 4-6 hours. I had a catheter and a drainage tube (to remove any of the wash fluid and blood left in my abdomen) for the first 24 hours, but then those came out (which apart from feeling quite yucky in the moment wasn't that traumatic) and after one patch of feeling a bit faint and nauseous I was able to stand up and go for a wee myself from then onwards without pain. I was able to eat and drink normally from the evening after the op, but it was about 5-6 days before I did a poo as I had eaten very little and the codeine slows things down (though I was given lactulose, which meant I wasn't constipated). I was quite gassy, and that was quite uncomfortable to pass. When I did eventually poop I had to make myself read so I didn't push to hurry things along, but again it was fine.

I came home after two nights, and slept a lot. Maybe 18 hours of the 24 in each of the next two days (which was unsurprising as I hadn't slept much in the run up to the op). But with regular ibuprofen and paracetamol, and codeine when needed, the pain has been manageable and reducing. After two days at home I had a shower and was able to take a little walk up my street, rather than just inside the house. However mostly I've been mixing up lying (bed or sofa with a big cushion) with sitting, and a bit of standing/walking. I've read two novels, which feels like a real luxury. I've got compression socks to wear 24/7 until I'm back to normal activity levels. As I am short with wide calfs they are a bit of a pain, as I have to wear them sticking off the end of my feet and keep pulling them down or they wrinkle and cut off my circulation.

Yesterday I managed to bake my Christmas cake by sitting at the kitchen table giving directions with my teenage daughter doing all the work. I only had ibuprofen in the morning and one set of paracetomol and codeine early evening. Apart from that my abdomen felt strange rather than painful - a bit like I had a tampon in, plus indigestion and if I turned it felt like I had done too many sit-ups the day before. My best description was that it felt like all my inner workings were a puppet that normally hangs in place and is easy to operate, but had been put down and picked up all tangled so nothing felt in the right place inside me, even though nothing was actually sore. On day 7 (today) I took the four dressings off to find neat little cross shape wounds that are healing cleanly and can now be left open until my stitches are removed in another week. Again mild discomfort, no pain.

My least favourite thing is injecting the anticoagulant each night. I'm on it for 10 days after discharge from hospital and have to inject into my belly fat. As well as having to stick a needle into myself (which I haven't done before) it burns for a few minutes after each injection. But I think needing anticoagulant probably relates to my weight, blood pressure etc and isn't a universal thing.

So far I haven't had a big emotional upheaval, though this may still be on the cards as the zoladex wears off and my body adjusts to the change from Tibolone to oestrogen patches. I've had the same mixture of small patches of anxiety or tearfulness, but maybe I've been kinder to myself about them. I'm off work until the new year, with a planned phased return, but it wouldn't be impossible to do a bit of emailing now if my husband wasn't telling me to resist that urge and rest. Likewise, he's had to veto me going to see a London show next weekend - that I was bought tickets for a year ago and was really looking forward to - as it would be easy to fool myself that I could manage it but the long journey and demands of navigating across London are clearly not wise less than a fortnight after major surgery.

So that's my update. Feel free to AMA.

[1Poppy1234]

Thank you so much for posting. Hope it all settles and the pain is gone.

[Tulip1983]

Thanks or posting and I hope your recovery continues. I'd be interested to know the doctor's medical reasons for opting for a hysterectomy even if there were no symptoms.

[mavenmi in reply to Tulip1983]

I think as I'd had some breakthrough bleeding in every zoladex interval he felt there was increased risk of endometrial cancer, and I'd had a scan which showed that I had very thick endometrial walls and a polyp, and he knew that it was too deep to treat with ablation. So nothing but hysterectomy would actually cure the problem (although had I tolerated it better zoladex did prevent the extreme bleeding and things may have resolved post-menopause). But I think he was weighing up the risks of further endometrial problems, with any risks of having zoladex long-term (which may have been exacerbated by other elements of my health profile, such as high BMI/cholesterol/blood pressure and migraine), my generally poor reaction to hormone treatments, and the side effects I was reporting.

[mavenmi]

I'm now nearly three weeks post surgery and healing well. I still haven't had much pain, just a sort of discomfort in my abdomen and vagina that comes and goes. I can walk and swim and cook, though if I stand or sit upright for too long I get achey places in my belly or lower back or sometimes a pulling feeling in my leg. No "swelly belly" - in fact I've continued to lose weight (now 2.5 stone down on my peak weight a year ago). I'm a bit more tired than usual, but in a lot of ways it feels better to be off the zoladex (no more itchy rash on my lower back, and my skin is less dry). The thing that is taking time to adjust is my hormones, as (despite HRT) I've had lots of hot flushes, night-time anxiety, mood swings and disturbed sleep. I'm quite glad of the Christmas break before I need to start a phased return to work.