Six months ago I had a hysterectomy, still struggling.

[tiredmum]

I have SLE, Hughes and osteoporosis , I had a hysterectomy six months ago, the op took over 4 hours due to scar tissue and they ended up opening me up instead of the planned keyhole surgery.

For the first month I felt OK, I didn't even use my morphine drip and only took paracetamol for the pain. But since then I have felt terrible. Everything is such a struggle. I don't begin to feel human until lunch time, back in bed by 7pm. I am in constant pain with my joints and muscles, increased chest pain, can hardly walk any distance, my brain is non existent and I keep having paranoid thoughts and dreams. I have also put in half a stone which no amount of dieting will shift.

Has anyone else experienced this? Surely it shouldn't take this long to recover.

[SjogiBear]

Hello Tiredmum

I had a hysterectomy about 4 years ago now and it really did take it out of me - it's a big operation. Like you they had to open me up for a full abdominal after trying to go in laparoscopically (annoying as they'd already told me they couldn't do it by keyhole but the locum surgeon still gave it a go!) - I had lots of adhesions so it took them a while - went under at 10am and didn't wake up until 5pm so I guess it must have taken a while. I recovered pretty well in terms of healing up etc but I was exhausted for a long time afterwards. I have now got a horrid 'tire' of flesh around my middle which I cannot shift and a flappy overhang. I think that might be quite typical for abdominal surgery - they went in where I'd had a caesarean so I feel that I've got no muscles of any consequence in that area. Have you spoken to your rheumy team about how you are feeling? The surgery may have induced a long flare. It can take months and months to get over something like this and I certainly found that they gynae follow-up was non-existent in my case but luckily my rheumy is extremely good and supportive. I do think you should have a chat with one of your doctors about how you are feeling. Things do get better!

[tiredmum in reply to SjogiBear]

Hi Sjogibear,

Thank you for your reply. I saw my rheumy today and he has increased my steroids for a month and will review me in three months. He said I may need a few increased courses of steroids or extra immunosuppressants to get me back on an even keel. Like you I did not have a gynae follow up after my hysterectomy so have really been coping on my own. My "tire" appeared immediately after the op, which I didn't think was possible !!

You have given me confidence that things will improve over time and I just have to be patient. Thank you x

[shareasmile]

Hi Tiredmum! I had a hysterectomy back in 2010. Unlike you, mine was done laparoscopically. However, I distinctly remember that at about 6 months I had excruciating abdominal pain. I work in the Healthcare System and have always explained to patients that it takes six months to a year to fully heal after a surgery. And likewise, doctors have said the same to me. I fully believe that my pain was part of my healing process. Sometimes it takes nerves a long time to heal and when they do it can be very painful. My patients have described shooting pains after healing for several months. I believe this is all normal. So I hope that your pain and tiredness will resolve. Your procedure was very traumatic to your body. I'm hoping this is the end of your healing process and you will feel better soon.

Blessings to you.

[tiredmum in reply to shareasmile]

Hi Shareasmile, thank you for your kind words. I expected a 6 month recovery time but not for my Lupus symptoms to keep flaring, but after speaking to my rheumy he wasn't surprised. Hopefully the steroids will ease my symptoms for a few weeks and everything will start to settle down.

[shareasmile in reply to tiredmum]

Oh so sorry, Tiredmum! In thinking on my own experience, i totally ignored the fact that you are suffering badly from your lupus. My apologies. I'm glad that you were able to see your rheumy and I do hope that your body settles down soon.