Pre hysterectomy nerves: Hi all, I am a... - Healthy Happy Woman

Healthy Happy Woman

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Pre hysterectomy nerves

officelady profile image
officelady

Hi all,

I am a newbie to this group but am hoping for a bit of advice and support. Sorry this is such a long post !

I am due for a total abdominal hysterectomy on 21st Jan.I have been being seen by a consultant for chronic sciatica which was presumed to be from a herniated disc (I do have a problem disc). I had a spinal injection in October which had no effect whatsoever. The pain radiating down my left leg is excruciating, I can only stand or walk for about 10 mins. The consultant wanted further MRI scans to see what was happening. I paid to have these done privately. These scans showed a large (12cm x 10cm) uterine fibroid at the top of my uterus. I then paid to see a gynaecology consultant who examined me and said that a total hysterectomy (including tubes and ovaries as I am nearly 52) would be the best option. She felt that the position of the fibroid could be making the nerve pain worse as it is pushing on the base of my spine. Has anybody heard of this before, or of a hysterectomy helping relieve sciatic pain.

This has all come as a bit of a shock and to be honest I am struggling to get my head around it. I have spent the last 3 weeks reading everything I can on the subject, which has probably not done me any good as I have read a lot of horror stories. My consultant suggested this website. At the moment I do seem to be in a very dark place about it all, not only the operation itself but recovery time and financial implications. I have been off work since October which means I will go onto half pay from 6th April. I am worried I wont have recovered enough to go back to work before April. I am also worried that the operation will have no effect on easing the sciatic pain and then I will need possible further surgery to sort that out.

I want to be as prepared as possible for the surgery and recovery so any information regarding exercise, vitamin supplements etc would be very welcome.

Many thanks

30 Replies

It was the best thing I have ever done. I did two years or more on special diets trying to shrink my fibroids... and they did shrink but they eventually came back with vengeance! I don’t have to worry about periods and not being able to leave the house.., only off hot flushes now ... and who cares about them when you know everything that could turn nasty has finally gone from your body!

Believe me when I say I was petrified, meeting with professions As I was scared to be knocked out, didn’t want an epidural etc etc... ok, it wasn’t pleasant but boy am I glad it’s all done now.. so go and do it, be done with the worry of what might be.

Message me whenever you like ... always here.

Jane x

officelady profile image
officelady in reply to janesbitz

Hi Jane

Thanks very much for taking the time to reply to my post. It's good to hear first hand of a positive spin on things - has already helped to lift my spirits.

Unfortunately I've always been a "glass half empty" rather than "glass half full" kind of person so

Have been focusing on the negatives so your reply has really helped. It's so nice when somebody you don't know takes time to help you feel better.

Will keep you posted about my "journey"

Thanks again

Jo x

Hidden profile image
Hidden in reply to officelady

Adominal hysterectomy hurt bad dont do it if you dont have too the pain is unbearable

Tonkatruc profile image
Tonkatruc in reply to Hidden

But.......I at least, got passed the unbearable pain from the surgery...and am free from all those female organs that were causing me problems.

Lara1244 profile image
Lara1244 in reply to Hidden

pull yrself together woman - you will be frightening everyone off from having their much needed operations!!! Yes incisions are painful when healing but there are so many more pros for people in constant everyday pain 👍

Hidden profile image
Hidden in reply to janesbitz

How do you stop vomiting

Tonkatruc profile image
Tonkatruc in reply to Hidden

Call your doctor now!

Hi I had my hysterectomy (total) on the 11th Dec I had keyhole with assisted V. I am slowly recovering and very grateful to have had it done. I am 51 and had endometriosis & adenomyosis so it was not for the same reason as yourself but here’s my thoughts.

So have you asked for a second opinion? Is it something you would like to consider?

I was due to have an abdominal hysterectomy as the consultant I was under did not perform keyhole, the reason I am mentioning this is the recovery time is often less and with you saying you were worried about time off work? I just wondered if you were able to have keyhole with your current surgeon?

I am so grateful I obtained a second opinion as I felt far more confident Witt the second consultant.

My friend had fibroids and was still able to have keyhole surgery for her hysterectomy and for her she said it has been life changing.

I can totally relate to your nerves I was so nervous prior to my surgery but if you trust your surgeon and feel confident of their ability then maybe try to think about your pain free future (that’s what I did) I also had a great team in theatre who really helped to relax me.

I can honestly say the pain after my hysterectomy was far less than my monthly’s .

There are lots of useful pre/post hysterectomy videos on you tube by physios that you may find useful?

The one thing that helped me immediately after my surgery was peppermint oil capsules as the gas from the keyhole can be painful.

I had a lidocaine infusion earlier this year for back pain and that really helped.

Good luck and keep us posted x

Hi there,

Many thanks for taking the time to reply. Its good to hear a positive outlook from somebody who has recently had surgery, all be it different to whats scheduled for me.

I have been told that the size and position of the fibroid (apparently its about 12cm x 10cm and at the top of my uterus) means keyhole is not an option but I am going to ask my consultant again and get the thoughts of my GP just to make sure - thanks for the suggestion.

Quite a few people have been telling me how much there quality of life has improved after having the surgery so i am trying to focus on that and look forward to a pain free future. I need to accept that I will need to take it easy to start with and not rush things and hopefully help my recovery.

Glad to hear you on the road to recovery.

Thanks again - wishing you a very Merry Christmas and Happy (pain free) New Year

Jo x

Hi there. I had my hysterectomy in march this year. Was suffering for more than 2 years met sciatic pain in my right leg. I do have osteoarthritis in my lower back. Initially I was in hosp due to possible kidney stones, which ended with a fibroid on the side of my uterus. My gynae did an emergency hysterectomy 3 days later. 6 weeks to recover and I must say my back pain and sciatic pain are gone. Been off all meds from Aug.

Goid luck for your operation, it does change your life for the better.

Hi

Thank you so much for taking time to reply. Your story has made me feel more positive about everything and hopefully this operation will help with the nerve pain as well as getting rid of other problems.

Glad to hear you have recovered well.

Best wishes for Christmas and the New Year

Thanks again x

I had a TAH and BSO in February 2018. Like you I had very large fibroids, my largest was 16x10 cms. I was keen to have keyhole surgery but due to the size, location and number of fibroids it wasn’t an option. My symptoms had been chest pain and nausea, my uterus was so enlarged that it was pushing up into my diaphragm so having the mass removed was a relief once I started to recover. From my own experience I believe that large fibroids can cause symptoms through pressure on other organs/nerves. Early on I was referred to an oncologist as my GP feared ovarian cancer (it wasn’t) but the consultant told me that extreme pressure on the diaphragm could result in heart failure. Convinced me!

Fatigue is bad after the op, I was shocked at how debilitating I found it! And it took me 12 months to fully recover from surgery which my GP (in whom I have total trust) told me would be the case some months after my op. When I say fully recover I mean feeling totally back to normal, I felt very well within 3-6 months. I was 62 when I had the op.

You haven’t said what kind of work you do - I went back to work after 6 weeks and struggled to do a full day for the first week. I work in an estate agents so was able to sit! But everyone is different, I have read comments on this site from women who have recovered from surgery really well and very quickly are able to get back to their normal routine. The best advice I can offer is to be kind to yourself post op and listen to your body. If you feel tired, rest. I got to to really enjoy my afternoon naps!

I can’t offer advice on supplements pre op. Peppermint tea after the op is great! There will be wind! Before surgery I was very anxious, but the pre op assessment was tremendously helpful for me. It’s your opportunity to ask about the op and what to expect afterwards. Calmed me right down.

Hope it all goes well for you and that the surgery helps you. Keep in touch!

S xx

Morning S

Thank you for taking the time to reply to my post. I am definitely starting to feel more positive about the long term benefits of the operation after hearing from others.

Like you, because of the size and position of the large fibroid I don't think keyhole surgery will is an option but am going to check again when i go for my pre-op.

The main message I am getting is the need to rest completely afterwards so that is what I am going to do. (I move house 2 weeks before the op so will have to get all the boxes sorted quickly !) I think a lot of my anxiety is because I really didn't expect this at all and was worried that it has nothing to do with the nerve pain in my leg. Hearing from people like yourself though has really helped.

Once again many thanks.

Wishing you a very Happy Christmas and New Year

Jo x

Hi Jo,

Hope you had a lovely Christmas and Happy New Year and that you are feeling positive about your surgery. I was about to say “looking forward to it” but realised that would be weird! Hope as well that your house move goes well next week - you will have to be very disciplined after surgery and not be tempted to do stuff. Keep a notebook beside you and write down everything you want to do when your energy levels return (they will, trust me)

S xx

Hi - thanks for that- I am trying not to feel so anxious about the op (not easy - hee hee) and focus on the positives. Am in the middle of moving so at least have got something else to focus on at the mo - Happy New Year to you and thanks again

Hi...i had the exact same problem and symptoms...had a total hysterectomy on 27th of August...am now nearly 5 months post op and last Mon I took up running again for the first time in years...have still some backache but nothing like before....first few weeks after op are the worst but it really does get better.....judt take it easy do some walking as soon as you can after op...i did research like you are doing and this is just my opinion but sometimes too much info is a bad thing...i wad petrified going in...and it wasn't as bad as I had thought...good luck xx

Hi,

Thanks for taking time to reply. Your message couldn't have come at a better time, I have got my pre op assessment this morning so am feeling bit anxious again. I feel better for reading your comments though. I used to enjoy running as well but haven't been able to for ages. Its good to know that it might be something I can get back into at some point.

Thanks again

Jo x

Take it day by day.. the fear is way worse than the op and post op....everyone recovers at their own pace and there will be dad when you get tired.....listen to your body and rest when you need to.....my back is a lot better than it has been in 20 years and I am no longer rushing to the toilet every half hour..the fibroids I had were causing most of my problems...good luck and if you want to talk feel free to message me xx

For me, my radical hysterectomy has helped relieve some of my back pain. I had a 9 cm tumor on my ovary , abdominal cavity was also filled with fluid ...so my back pain was bad.

I have had lower back pain for yrs. My trainer taught me how to get rid of the sciatica part of it.

I had to learn to foam roll and stretch the front part of my legs ....and build up the muscle and butt in the back part of my legs ...and body.

Hi all,

Well I'm now 4 days post op and back at home. At the minute I must say that I don't feel too bad. The pain straight after the op was awful - had surgery at 2.00pm and was still writhing around in agony at 10.00pm whilst the doc's tried to get pain under control. Eventually sorted with morphine injection. I asked them to take a photo of what they removed and in a strange way I think seeing it has helped (it looked like a baby alien!!). The consultant explained what was what and showed me the size of the fibroid. seeing it and knowing it is now gone as made me feel more positive about why the op was necessary.

My main problem now is constipation - which I know is common after this type of surgery.

Am doing all the suggested tips, warm drinks, plenty of water, fibre etc but so far to no avail. The constant feeling of "needing to go" but not being able to is not good. Its making me not want to eat - which I know in itself wont help. I'm also trying to rest as much as possible so I don't over do it and again being less active I know won't help.

Has anybody else suffered with really bad constipation and got any tips on what else I could try?

Thank you for all our previous messages, they really helped.

Jo x

Hi Jo ,I also suffered with chronic constipation and used a stool softener and Laxido which helped get things moving again .It really is a horrible feeling but it will get better .Take care of yourself and get plenty of rest .x

Hi Jo, good to hear you are on the mend. I suffered with constipation as well and took laxatives my gp prescribed for about three months post op. Then I went on holiday and did a lot of gentle walking which got me back to normal. No more laxatives! You will get better x

Hi

Thanks very much for getting in touch. I ended up back in hospital to have an enema which wasn't much fun but got me sorted !! Have been put on mild laxatives now so that's helped. It's really good to hear from people telling me that things do get better - that does seem a long way off at the mo but it's only 10 days since my operation. Some things aren't as bad as I expected but others are worse. I think the worse thing is the low dull sore pulling sensation in the bottom of my stomach. I have to sit down very gently and when I walk I feel like I need to hold my stomach.

Once again many thanks x

My goodness that was bad constipation! I think when you are fully mobile in a month or two ( well that’s how long it took me) that will help too. I also found that I felt uncomfortable peeing for a few months, odd feeling which I find I can’t describe. Anyway that passed ( no pun intended) as well. It’s 2 years on 8 Feb since my op and I feel totally normal.

As soon as you feel you can I recommend using bio oil on your scar, just massage a little in every day. I found that this really helped the appearance of the incision site, my scar is very faint now and I still use bio oil on it a couple of times a week after a bath or shower. The area of my incision still feels a little odd but that’s just normal healing and scar tissue.

And yes I did the holding onto my stomach thing for quite a while. I also wore big knickers with a bit of support in them for a while as I found that I needed it (instead of holding on with my hands!). I wore them for quite a few months and then found I didn’t need them anymore when my insides had gotten used to their new arrangements and could support themselves!

Lastly please be kind to yourself and rest when you need to.

X

bearliner profile image
bearliner in reply to StIvesmaid

HI there StIvesmaid. I am almost 3 weeks post OP today. It's been smooth thankfully. I was a total bag of nerves before the surgery. Like you i had big fibroids (largest was 15cm x 10cm). I am finding comfort from a lot of women here. There is one thing you mentioned that was light at the end of the tunnel for me. The uncomfortable peeing part. It is truly an undescribable sensation - like an itch or an ache or a healing wound inside. Tomorrow I am off to the doc to rule out UTI. I don't really find it burning or painful when i pee, no blood, smell or fever but everytime I am about to pee, I brace myself that it may be painful but it's not. Sometimes before peeing I find a slight ache or discomfort that goes away after the first drop. It's also a new feeling I definitely didn't have this before. It also just appeared on the 2nd week post OP. How long did you have this sensation and did you do have to take any medication for it or it just went away? Sorry for the many questions. It's such a unique condition I find hard describing it too to others. I am happy to hear that you are well and feeling totally normal now. Take care and keep rocking x :)

StIvesmaid profile image
StIvesmaid in reply to bearliner

Glad to hear that your op went smoothly. I didn’t take anything for my pee situation, it just improved over time. I can’t really remember exactly when I realised that peeing felt normal. For passing solids (!) I took laxatives from the op in February until May when we went on holiday and I was walking all day every day. That seemed to do the trick for me. I had odd feelings around my scar (bikini line, I insisted on that!) for a year or more. Even now I sometimes get a twinge.

I think all the odd sensations with normal bodily functions are part off the healing process - your body has been traumatised first by the fibroids then by the surgery and takes a while to adjust itself to the new internal layout! Try not to worry and be kind to yourself, it will get better x

bearliner profile image
bearliner in reply to StIvesmaid

Thank you so much for replying and your comforting advice. I realise it does get better Everyday. In fact this morning I woke up and somehow that sensation has gone down and I am feeling more normal in weeks. I will remember you and your kind words like a light at the end of a tunnel x. Bright blessings to you 😊

Hi all, well tomorrow will be 2 weeks since operation. Thought I would update on how things are going. So far by far and away the worse thing was the trapped wind and constipation - horrendous - but that's all under control now. I've been advised to continue with a mild laxative for a while. Last night, through the night, and all day today I have had a sharp stabbing pain low down on the right hand side. This is on top of the dull aching dragging feeling when i walk or sit down !! I am one of life's worriers so have been imagining all sorts of things ! Reading up on things though I think I think I will try and rest completely for the next couple of days as it's probably my bodies way of telling me that's what i need. Its true what they say - you do need to listen to your body. I do find it hard to turn over and get comfortable in bed so I'm hoping that I've not strained or pulled something that's trying to heal. The one good thing is getting everybody to run around after me for a change - hee hee Thanks for all your support and reassurance so far

I had a hysterectomy 7 months ago now. I found it hard because I’m really very active. I went from walking the dog three miles a day, swimming, aqua aerobics, walking to work, working in a school, to doing nothing and it severely depressed me. But rest is the best thing for you. I would rest, feel ok then too much and suffer the next few days for it. Not good!!! Took me a while to slow down, mentally and physically, and let other people help me. You’re right, listen to your body. Have a snooze every day. Have a short walk every day. Get your mind occupied with puzzle books, reading, jigsaws. The physio told me that if you do too much you will hurt so you must stop. That aches and pains in your side and groin are completely normal. And that your belly can swell up to 12 months post op. Mine still does if I do too much but it’s getting better. Look after yourself. It’s all worth it in the end. No pain, no bleeding, you’ll feel like you have your life back. All the best 😉 xx

Hi all - me again !!

Well its now 3 1/2 weeks since the op. My stomach is now not so sore and moving about, and getting up and down is a lot easier. Sneezing and coughing no longer has me bent double clutching my stomach - hee hee. I've managed a short walk each day for the past few days which has been nice to get out of the house. However I now have really bad lower back ache which I am worried about as it was one of the main things I was suffering from before the operation. At this point I haven't got the sciatic nerve pain in my leg and am praying that doesn't come back. If I bend forward or reach for something I have to support my weight on my legs as the whole of my lower back and tops of my legs feels weak and painful. I didn't notice this at all the first couple of weeks. Has anybody else had this happen? and any tips for easing it. I cant do a lot of stretching yet as I'm only 3 weeks post op. Of course me being the ever pessimist am now convinced that I will end up with further surgery on my back - which was the point we were at before the fibroid/hysterectomy was discovered.

Thanks very much for all the support/advice so far it has really helped.

Best wishes

Jo

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