Recovering at home: Pain, frustration and isolation

Well, I’m almost 11 weeks post-op now and have been recovering at home for some time. It hasn’t all been plain sailing: I’ve had complications and I’ve occasionally misjudged what I can and can’t do.

The title for this post seems to suggest that I need to write about the negatives first, so that must be where I’m at at the moment. The negatives are a valuable part of the recovery process: without these, you can’t have the positives. It’s also quite a long post, so don’t start reading if you’ve got plans for next week!

Again, maybe avoid the section on pain if you’re a bit squeamish or are eating. I’m going to try be candid and not pull any punches, both to remind myself just how far I’ve come in the last few weeks and to help readers to understand just how painful a hysterectomy is.

PAIN

Having, and recovering from, a hysterectomy hurts. It hurts like hell, both inside and outside. It’s a last resort procedure for a reason, and if it’s something you’re offered…THINK HARD and ASK QUESTIONS. Again, I can only write about my own experience, but it’ll give you an idea of what is involved in having a hysterectomy.

The facts: to remind you, I’ve had an abdominal procedure, which involves a large (6 inches) incision just above my pubic hair.I had stitches in my wound but some surgeons use staples (I’m SO glad I didn’t have those!). There are also routinely around 100 internal stitches, a figure I couldn’t even imagine until recently.I had my stitches removed at the local Dressings Clinic exactly a week after my operation.

The pain I’ve experienced hasn’t been from my wound itself. There’s so much cutting of muscles and nerves that I’m still pretty numb around the incision site itself. No, the pain is internal. I’m now talking about the post-op wind pain; I’m talking about the pain caused by my abdominal organs being manhandled and moved about during the surgery. I’m talking about the pain I still get now when I stand up or sit down, or when I’m on my feet for too long, or when I go to the toilet.

I’m going to write about the last one first, because in those early days and weeks, this was by far the most debilitating pain, it’s one that no-one told me about, and it’s probably the most embarrassing pain to discuss. Even now, almost eleven weeks on, it still hurts when I empty my bladder or my bowel. Nobody mentioned this beforehand, but since my op I’ve read lots of women’s accounts of suffering this pain. It actually took me a while to realise what women meant when they were writing about a BM (bowel movement)! I’ve actually got a different name for it – I’m going to call it a ‘Barry’. BM = Barry Manilow and let’s face it, apart from Bermuda Triangle in 1980 (!), most of his stuff was frankly a bit shit (see what I did there?!).

Anyone who has had a child, or any form of abdominal (or presumably anal) surgery will understand the fear of the first Barry following an operation. The fear that all your innards are going to fall out, or that you’ll burst your stitches if you push too hard, or simply that it will hurt. I had all these fears after my operation, but worst of all was the agonising, griping, twisting pain I felt in my lower abdomen (presumably my bowel) after doing/having a Barry. It was these times that had me in tears for the first two or three weeks in particular, the pain was so bad. For several minutes afterwards, I would cry and be unable to move – and it was awful that my kids saw me like this and couldn’t do anything. I knew it would settle but for those few minutes…jeez, it was excruciating. That’s one thing that no-one warns you about, presumably because it’s an embarrassing topic, and we British don’t talk about these things. But it does get better. I still have pain sometimes, and there are still times when I hold a pillow to my stomach during a Barry, even now, but it’s nothing like it was. I had very little advice from the hospital about this, but found this physiotherapist from Australia who basically taught me how to get in and out of bed and how to empty my bowel with minimal pain and causing no damage. It’s not elegant, or indeed quiet, but it really helped me.

So that’s the least-talked about pain. Other times that caused pain, and still do to a lesser degree, include walking around, sitting down / standing up from a chair or the sofa, lifting my legs to get in and out of the shower, reaching up or down, lifting etc. – anything basically, that involved moving. It’s difficult to get definite advice about what you can and can’t do, presumably as we’re all different and there are so many types of surgery for hysterectomy.  (Note to self: feeding the cats the day after I came out of hospital was a fucking stupid idea!) One of the more useful guides I found is week by week guide to recovery in this book.

One of the best, and hardest, things to do to help the pain is to move about. The discharge nurse at the hospital said that some women go home and take to their beds when they come out of hospital, but that that’s the worst thing to do, unless you are told to have bed rest, of course. I live at the top of a steep hill with a shop at the bottom, and it was week two or three before I walked down to the shop and back. It hurt more going downhill and I made sure my son came with me. For the first month or more, the most exercise I got was walking from the front gate to the rear gate of the house and through the garden. I used to do this several times and called it ‘walking the wall’. Also,. my pain relief regime was like a military operation, with different painkillers I could take at different times, and with different durations between them. I ended up recording on my phone what I’d taken and when, setting reminders so I could keep myself topped up.

The other thing I’d heard of, but wasn’t really prepared for was the ‘swelly belly‘. Even now, if I spend too long on my feet (though I can manage much longer these days), my abdomen swells and becomes painful. I was talking to a woman who’d had just her ovaries out and she described the swelly belly as like wearing a rubber ring around her lower abdomen – that’s just what it feels, and unfortunately looks, like. For a month after the operation, I wore an abdominal support band during the day, which did help.

The main pain I’m suffering now is because I still haven’t healed inside (where my cervix was) yet, and keep getting sharp, jabbing pains there. I also have some internal stitches that haven’t dissolved yet, one of which is apparently visible in my scar – eek!  And, of course, the pain I feel when I glance down at my swelly belly (it wasn’t exactly small before the op – it’s bloody huge now!).

So that’s the pain.I’m sure there’s more I could say but I really won’t. The pain settles down and I now only take painkillers as and when I need them.

FRUSTRATION

As the pain lessons, so does the frustration at being able to do so very little. Even filling the kettle and making the bed were no-nos to begin with. I’ve had to learn to deal with not being able to do things, and to rely on other people to do them – not easy when you’re a bit of a houseproud control freak. About 5 weeks in, I did some light housework, just dusting and tidying, and was really sore afterwards, so it’s all about accepting the change in pace for a bit – and this is hard to do.

There’s also been the frustration at not healing quickly, not being in control of your own body and what it does. Through no fault of my own, my wound became infected after a couple of weeks and took three weeks and two courses of antibiotics to clear up. This infection caused the wound to open up (though not all the way through to my abdominal organs), and it only fully closed after 9 weeks. This was incredibly frustrating, because whatever I did, it wouldn’t bloody heal and there were nights I came home from Dressings Clinic and burst into tears because I simply could not see the end. It meant I was having my dressing changed every other day (every day, for two weeks) and I couldn’t shower because I had to keep the dressing dry. Coming home with no dressing on the 17th August was a brilliant feeling, and now I can even bathe!

ISOLATION

I think I’ve Facebooked more since my operation than I had in the preceding couple of years (I’m a late user of FB). When all I could do is lie on the sofa, I relied on people coming to visit me, and most people I know work and have lives and stuff. It wasn’t a huge problem for the first month or so because all I did was sleep and moan and cry, but as I became more like me again, I really missed seeing people. I remember looking forward to going to Dressings Clinic in the evening just because I would get out of the house and see people!

About three weeks in, I had my first social outing, when I met a couple of friends from work for a (non-alcoholic) drink. I was given a lift there and back, and sat with a small cushion against my tummy, but it was great to get out of the house and talk about something other than wombs and wounds etc.

My second social outing was a week or so later, to an event round the corner from my house arranged by a group who support Syrian refugees to the area. I managed to walk there and back and stayed out for about an hour. Getting out and about, even for a short length of time, really helps the frustration as well as the isolation and reminds you that  there’s a whole world out there beyond your surgery. Reminding myself of what refugees have been through, and survived, also helped put things in perspective for me.

My third social outing was on 18th July, for my son’s 24th birthday, when I was pleased to discover that even with my huge post-hysterectomy belly which has its own post code, it is possible for my eyes to be bigger than my belly – phew!

Since then, I can get out and about a lot more. I can walk into town now, and sometimes even walk back again! I’ve even started driving again in the last week, which isn’t entirely comfortable, but means I can get out if I want. Yesterday I went for a short walk and bumped into a friend with her children. So, hopefully, no more isolation and I’m looking forward to meeting up with people before my return to work.

Phew, this was a long one. Sorry for that! I’ll try and be shorter next time – I feel a glossary of ‘Words I have learned’ coming up…

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