We have been undertaking research into the experiences of women having hysterectomies because there is little research information about the impact that having a hysterectomy can have on women.
If you have already had your hysterectomy, then we would be very grateful if you would help us to get a better overview by taking the survey below, it shouldn’t take more than 10 minutes to complete but will be enormously helpful to us in encouraging change with the National Health Service.
This site is really helpful, I’ve gained more knowledge from H/A than from GP or Consultant.
Why thank you kindly Nicola, I’m glad to hear we’ve been able to help.
Being 12days after my Hysterectomy your H/A has helping me not to feel alone with lots of information to help me with my recovery. Thankyou.
Wow! I’m not the only one feeling pain from post Hysterectomy cysts!
It’s not common, but it does happen Anna
I had a subtotal hysterectomy on Monday week and I am sorry to say I had the most terrifying experience with post -op complication and had another resurgery due to haematoma and gap wound. the most intrinsic concern was going back to A&E after loosing about 200 -300mls of blood and waited for a bed for nearly 8/9 hours.
I just wish I didn’t opt for this procedure in the first place.
Gosh, what an experience you’ve had. No wonder you feel the way you do.
The ONLY place I have any advice from. Great speaking to others in the same situation
Why thank you for your lovely comment –
Had a reasonably straight forward vaginal hysterectomy last week and feel fab, but left totally in the dark about post op symptoms, thank goodness for your web site.
I’m glad we could help Emma
How long was it after your op that you were able to get up and do thing around the house, I am waiting to have my op and dread the thought of not being able to do things for myself
It depends on what you mean by get up and do things Elaine, if you mean vacuuming the floor then probably a few weeks, if you mean a little light dusting then as soon as you feel able to. Everyone is different and what you feel you can do will be unique to you . You don’t need to sit and do nothing and you should be exercising from day one with a gentle, SHORT, walk which you increase by a few yards each day.
I left hospital 12 days ago feeling really abandoned. Although I am doing well and being looked after by my family. The information I have gain from your site is invaluable, I shall be making an appointment with my doctor on monday to receive hormone treatment. Thank you very much for the emails you send and it’s nice to know I am not on my own and the symptoms are normal. I haven’t been brave enough to post in a forum yet, so a big thank you to “The brave ones”
Take Care and a speedy recovery to everyone.
You are very welcome Toni, glad we could be of assistance
I feel exactly the same. You are cared for around the clock in hospital, but when you get home………..nothing……….you are left to fend for yourself. I feel lucky to have a Dr and Nurse in my family. They have been an invaluable source of support and information for me.
Julie
4 weeks post op xx
I agree that from the time I got home i felt there was no support. Luckily my daughter who is a nurse was able to reassure me that the wound was okay and also put my stockings on each night as this i found i was not able to do. She does not live with me so this meant she was coming into me for a few weeks as they say to wear support stocking at night for a few weeks. The hospital knew i lived alone but did not ask if i needed any help.
I had my operation nearly three weeks ago. I’m so glad to have found your website. It gave me lots of useful info and all the forums were brilliant and really helped me understand what I was going through. There hasn’t really been anything else out there with so much information, even my husband agrees. Thank you for putting it all together.
You are very welcome Lisa, thanks for such a lovely comment
I had a total Hysterectomy 8 weeks ago. I had a very large tumour in my womb so i have a bikini line incision and have been cut inside.
I have felt ok up to press. Antibiotics for an infection in the begining but starting to perk up now.
I am now starting to feel quite painful pins and needles all around my abdomen is this normal?
Also as my overies have been left will i still release monthly hormones?
I have just come accross your site but it is great to speak to people in the know.
Thankyou
Hi Ruth, yes pins and needles are normal and are a sign that nerves are starting to heal. You will still have a monthly cycle – whether you still had ovaries or not as the female sex hormones are produced in lots of different parts of the body too. Having said that, the cycle won’t be as obvious as it was. Linda
i was going to ask if anyone else had pins and needles i feel like ive got stinking nettles in side ny site wound im in my 5th wk post had a total hysterectomy had my ovories out 2 im 46 do i need to have hrt im sweating like mad like before my op im so glad i found this site thankyou for all your info
Hi Rachel, it’s quite common to have this feeling and is normally an indication that the nerves are healing. If you are concerned though you will need to see your GP.
ty linda when i go for my 6wk check up is it ok with u 2 give my hospital this site or the ward where i was in i think this will b very helpful i love this site keep up the great work
Absolutely Rachel – the more hospitals, gynaecologists doctors know about the better in my opinion
Last April 2010, I had a total hysterectomy (41years) due to 2 large tumours – I found your website very reassuring and a great support both before and after surgery.
9 months later and I’m feeling better than I’ve ever felt! Currently taking Zumenon 2mg, and not experienced any side effects.
I wanted to say a big ‘THANK YOU’ for all your support and to all those other women who took the time to post their own experiences!
Sarah
had my op 10 days ago still blown away by it all found lynda and website reassurin and a blessing so thank you
Glad to have been on help Jenny.
i had a total hysterectomy 12 days ago my family are looking after me well, i have started experinceing sharp pains in my hips on the right side in paticular is this normal?
It may be associated with your nerves healing or it could be a slight infection – have you spoken to your doctor?
hi linda
i had a total hysterectomy 10days ago and so far so good,the usual aches and pains after surgery but nothing serious,had my stitches out this morn and everyone was pleased with my recovery.Your site was really useful i really enjoyed reading it,your comments were very helpful..If anyone out there is frightened then dont be,remember everyone is different some recover quicker and some dont,keep reading sites like this because the comments good or bad have been written by us who have been through it,if in doubt contact your doctor or hospital,so good luck to you all,we will get there eventually..
I couldn’t agree more Nadine, being informed is the only way to manage the fear and stress caused by the threat of major surgery.
I had an hysterectomy last week (Jan 31) along with an anterior repair and cystoscopy which showed the erethra was stenosed (v. narrow!).
I feel I had a bad time and felt like a piece of meat in a private hospital. I feel so emotional, woolly, lost etc., etc.
My husband is phenomenal as are my sons; my daughter – no. Don’t know why.
How long do you feel like this? No-one is hospital seemed to understand when I said I was emotional. I felt that to them, I was a nuisance who kept getting upset!
Hi Dael, our emotional response can come for a variety of reasons. Firstly there is the bodies own reaction to the trauma of surgery which stimulates an emotional overload, secondly there are the hormonal upsets whether you have your ovaries removed or not, thirdly the anaesthesia used can cause us to experience our feelings more and finally there is our own reaction to the meaning we put on the importance of our womb. If you experience all of these (and it is possible) it will be a very intense and emotional time, but it will pass.
hi linda,15mths since my t.a.h. and everything has been great,no problems at all the odd hot sweat but decided to go cold turkey as i dont want h.r.t. So far so good,no regrets at all,my sis had her t.a.h. in sept 2012 and again no probs apart from 2mths after she fell down stairs carrying a xmas tree and broke her foot…Many thanks for all the help you give everyone especially me,i still read the site and i pass it on to others,take care everyone..
You are very welcome Nadine, glad we could help out
hello i wonder if any one has any advice? i had a total hyst and cervix and ovaries removed because of endo on 14th oct. i have had it for 26 years ane endured 6 operations and countless drug therapies and just wanted to be rid of pain. All has been fine except that i can no longer have sex because of the pain. . . . . . . . .my internal scar is so painful -so i returned and told my gyne who said i have lots of granulation tissue on my scar and he cauterized it with silva nitrate and told me it should all be ok and not to have sex for a few days. well . . . over the next few days the pain was worse then when i had the hyst done and i was in bed for a week. it did evetntually ease off and three weeks later we tried for sex again but the pain was so bad it was just impossible and i am left with so much tummy pain its just not worth trying again. please help as i am worried this is going to ruin my 20 year marraige.
Are you taking HRT or an alternative like Black Cohosh? If so you’ll need to stop because the endo may well have regrown. You’ll need to give it time to die back and that could take a good twelve months to do.
I am 42 and 2 weeks ana day post surgery. I am soo tired after I do the simplest task. Is this normal? And I found some really good imformation on the site!!! Soo glad to find it!!!
Tiredness is perfectly normal Jennifer.
Just been for my pre-op assessment. I am full of fear of the pain and my pain threshold. Worst of all I am a childless, motherless woman, aged 44 (next week!). Im very sad & grieving at the thought of never ever being a Mother. I think the loss is harder for that. The anaesthetist nurse told me not to take any herbal remedies including arnica. I was planning to do so a week before the op to help with the internal and external bleeding. Sometimes too much reading and information can render you powerless but found this website very informative. How do I allay my fears and tears?
It’s such a hard thing to do Rovianne because you are dealing with a very complex set of emotions and the surgery will (to some extent) exacerbate them for a short period of time simply because of the physical effects of surgery. You are right, at some point we need to know when we have enough information, and when any more would be too much. Perhaps a chat with your GP about arnica might be helpful.
I sympathise with you, I had my hysterectomy exactly a year ago today, at the age of 42. I too am childless and it is my biggest regret in life but unfortunately that it something I can’t do anything about now and I try to look at the positive things in my life. I have a totally amazing man who supported me in every possible way through my operation and recovery. Three months after your op I hope you are feeling better about things
i had a full hyst 2007 mayjor comlications lead to futher surgey i am lucky to be here i used to be very active but now even 3yrs after i stil have no interest my doc tryed me on dif tabs & gels the only thing left implants which i refused this was all in the 1st yr what should i do/ i would love to go back to my former self
Gosh that’s a very big question Judith and not one that is answered easily as you don’t say whether your current problems are related to the hysterectomy or the further surgery. Have you tried any of the natural alternatives that can help with menopausal symptoms? http://shop.hysterectomy-association.org.uk/products/Healthy-Eating-for-the-Menopause.html
What a great website. Such a great source of information for someone facing hysterectomy and what to expect. Now that I’m 3 weeks post-op, I come back to read the post-op comments left by other women just to see if my experiences match what others are going through. I’m feeling good and healing good with the exception of the swelly belly:)
I had a sub-total hysterectomy (cervix and both ovaries left, fallopian tubes removed) 24 days ago. I had multiple fibroids and was unable to urinate. So far, generally, all seems well, I do get extremely tired after doing simplest of tasks, but I have learned to do a little and rest a lot!! As women I know that this can be very difficult particularly if you have a family but in my experience in these first few weeks of surgery I think it’s crucial .
For me the information from my local hospital (although generally limited) regarding post op exercises was good. I have done these daily (normally in bed) before getting up as well as some gentle yoga exercises – legs up the wall pose, deep breathing belly exercises, hero pose(researched through internet – see http://www.yogajournal.com/practice/683) and walking (I have increased daily). What I have found surprising was that (although my stay in hospital was good) some women were given this info whilst others weren’t. Some had access to info pre operation – others didn’t. Amazing! It seemed to vary so much.
What has greatly benefited me has been this website (well done to Linda and all contributors!!!). For those of you haven’t yet done so, I would also personally recommend the pelvic floor exercises and tips (bladder control, emptying bladder properly etc) by Michelle kenway – pelvic exercise.com.au Also, the tummy band available form this website and wearing big knickers!! I no longer feel as if my tummy is ‘falling down.’
Before and after the op I did some research through internet and asked other women who had had the op about their own experiences. Aged 42, I felt the hysterectomy was my last option as I had multiple fibroids that prevented me from urinating. I had researched other options including embolisation and a myomectomy but as so much time had lapsed and I was keen to get back to normal I eventually opted for the hysterectomy. As I had walked around with a catheter in and a bag attached to my leg for 6 months any effective solution seemed good.
Now post op I can now pass water again. Fantastic! What has worked well for me has been eating well, drinking lots of water, walking, very gentle exercise, pottering about the house, lots of rest and of course my family/friends who have been wonderful and incredibly supportive.
I had TAH and ovaries were removed 3 weeks ago. Had slight infection in wound a few days after discharge from hospital, but apart from that have made quite a good recovery. The only problem I am left with really is pain on passing water, but there is no infection. Doctor has asked for another sample to make double sure, but would like advice on what this could possibly be.
Also I can’t get over the feeling of being butchered (bit extreme I know) and am disappointed with the total lack of after care. I don’t know what I expected, but I did think that a District Nurse would come and check on me a couple of times. I noticed that my wound was weeping though before it got serious. Can I just add that I have a large family and they have all been very supportive especially my husband, who has been a complete star!
Have some days where I could just sit and cry, not because of a sense of loss, because I have all the family I intend to have, but I think its because of the trauma of the surgery itself.
Although my post seems as though I have nothing but complaints, I feel my surgery has gone well and I have the all clear to go back to work on a phased return after only 4 weeks, so do consider myself very lucky.
I wish everyone who has gone through any kind of hysterectomy a speedy and full recovery.
Julie
Don’t worry Julie, it’s very common to have a strong emotional reaction to the surgery and you are right about the aftercare – it depends on where you live whether you get a post op checkup even.
hi, i had a total hysterectomy 6 weeks ago,i had a grapefruit size lump removed also.it all went well,my gynae consultant said she found a variety of extra things wrong when she went in,like endometreosis,fibroids,and my bowel was stuck to my ovaries.before this,i was complaining to my gp for about 2 years about a bad pain in my groin,to no avail.i even had a massive infection of my lymphatic system 3 times,and a small lump in my groin.he just kept giving me antibiotics,i was wondering if anyone else had a lymphatic problem&is this normal.i think my gp doesnt take much notice because im disabled,and he is used to seeing me about having a bad spine,and all my ailments,etc.that he just put it down to arthritis,etc.it was in fact my rheumatoid doctor that sent me for a ct scan,when they found my lump,so im so grateful to him for getting me referred,as my gp did nothing.the worst thing about it all was the pulling out of the drain,the catheter wasnt too bad,but my stitches were in so tight they had to basically rip them out.i nearly hit the roof&bled a lot after.its still sore,&i can feel two hard lumps under the wound that feel like tight stitches pulled together&i havent felt like doing much,because i lost a lot of blood,during the op,& im now anaemic&on iron tablets3times a day.i still feel very giddy&boiling hot all the time.i was wondering could you tell me if this will go away soon?or is it symptons of the menopause?i havent got a clue about what happens&when will i need to go onto hrt,or not.im so very grateful to you &all the ladies out there who have kindly shared their information to all the plonkers like me,who at the age of 47 stiil dont know anything!lol.i dont even know what will happen when im allowed to start having relations with my husband again,& where does the semen go to,& will it now get lost up there!i told you im a plonker!lol,anyway,thankyou so much for all your help,everyone,i am most grateful.from donna calnan.xxxxxxxxxx
Not a plonker at all but you could be menopausal …. and if you want to have sex, normally six weeks after is OK as long as you are all healed inside.
You mention Donna, that the Doctor puts down a lot of the symptoms as due to existing conditions or your disablement – would it be an idea to make a list of things that you are experiencing and questions you may have and when you next see the Doctor, that you make a double appointment so you don’t feel that you are being rushed through the system and have a chance to get answers?
I’m surprised that you are not on HRT as yet. Again, have a word with the Doctor – if you feel that you are not being listened too, ask to see another Doctor or ask to be re-referred to a Consultant who hopefully should be able to get you back on track. Fingers crossed and let us know how you get on.
Thank you also for mentioning about the ‘relations’ ! First of all, you definitely are NOT a plonker!!I work in the NHS, (due for surgery soon) and I was in the dark as to where ‘stuff’ goes after everything else is removed. My husband found my description of it floating around just like cyberspace rather amusing, but to be honest, it was the main thing I couldn’t get my head around!! I have many medical professionals in my family and didn’t really want to ask them.
To actually find that once I have a total abdominal hysterectomy and bilateral salpingo-oophorectomy – (everything goes bar the kitchen sink!!!) that they will put stitches in to seal off the end, is actually a huge relief.
I shall certainly be glued to this site before, during and after my surgery & hospital stay. It’s a little treasure!
hello i am 9 days post op after having ovaries fallopian tubes and womb removed via bikini line i know nothing about if i need hrt or not and wow does this hurt cant sleep as unable to turn over in bed confined to laying on my back not good…… i am 50 years old and had fibroid and Polly ovaries x
You will get better – honest and it will be easier to turn over in bed too
Hi, had a total hysterectomy on the 29th March for adenomyosis and severe adhesions. Have felt really well, apart from the tiredness, which is overwhelming after the slightest physical activity.
I am due to go back to see the consultant tomorrow, 18th April, to discuss HRT. I have absolutely no idea what to do. I have suffered with my hormones for most of my adult life, together with endometriosis and have really had enough of all hormomes, but over the past couple of day i have started to experience anxiety attacks agains and feel really tearful. Is this normal? The night sweats and hot flushes are not too bad and i can cope with them but it is the anxiety that I hate as it really stops me enjoying my life. Would HRT help? I know that you cannot tell me what to do, but a bit of advice would be helpful. I have been told by so many people that after the surgery i will feel like ‘a new me’ but at the moment i just feel anxious and panicky.
I have to tell you that I think that your web site is fantastic, it is so helpful and informative and it has really helped me to get through my hysterectomy. Keep up the good work.
Thank you
Kathryn
I guess by now your GP will have said that HRT can definitely help. It can, and does help, I have been using HRT since 1995 and have had no problems at all.
I think it’s good to educate and inform yourself about things that affect you, and your website was a valuable resource which I was pleased to find.
I think that the quality and effectiveness of the patient information produced by the local hospital was not very good/ not very patient focused. Your website is entirely patient focused because it’s written by the people experiencing the symptoms and undergoing the procedures. It helped me to understand the choices available and enabled me to say what I wanted in a clear way.
For me personally, being able to have some say in what is done to me makes all the difference – I don’t feel that I’ve been diminished through having a hysterectomy, I know what I should expect of myself in terms of recovery, and I’m feeling positive about getting back into life and work in the coming weeks and months.
I fully agree with other contributors that there is absolutely no aftercare – I’ve been sent home with a bag of medicines and some self-administered injections, and not much in the way of informed guidance from the hospital. I do have the comfort of knowing that your website is there and if I do want to find out something more, I know I stand a good chance of finding answers there; thank you.
It’s unfortunate Caroline that your experience is the rule rather than the exception, it’s great though that you found us and were able to be so pragmatic about things.
I am 8 weeks post op – partial hyst. (kept ovaries), abdominal – due to a mega fibroid which had made itself at home in my womb – all went well with surgery and is going well. At this stage though, I still feel a bearing down/weighty tightness in my abdomen when i get tired. I am curious as to what causes this and … is there anything (excercise?) i can do to alleviate it, and should i hold off hill-walking (which is my main hobby) for a while longer?
Great site – very useful and reassuring.
Thanks for the positive comment Madeline, it sounds as if all is going well although if you are feeling unusual things like the bearing down it’s probably an indicator you may be doing just a little too much.
What a wonderful site. I had a laparoscopic total hysterectomy 5 weeks ago and doing quite well considering. The hospital gave me no info whatsoever when I was sent home just a bag of pain killers. My partner rang the surgery after a couple of days and the district nurses were upset because they were not informed that I was home and they promptly came out and were wonderful. Everything we needed to know that we didnt get from the nurse is on your site. My partner has been amazing and after reading your site has done all the looking after of me himself. Thank you
Wow, what wonderful comments Angela and thank you, I’m pleased we’ve been able to help fill in the gaps
Had a total hysterectomy 10 weeks ago due to endometriosis,recovering well but have found aftercare and information on the menopause non existant,it was a relief to read the other comments and find i wasnt the only one feeling this way.
Can you tell me how long the menopause lasts when you have had a hysterectomy?
Does it go on for years? I have been advised against HRT as i have a family history of breast cancer,and was treated for endometriosis.
Fantastic website and information,thank you x
Gosh, that’s a difficult question to answer Debbie as the menopause and how it impacts is such an individual experience, both in terms of the symptoms you experience and length of time it takes. If your mother or another close female relative is still alive it might be worth asking them how long it lasted as that would be a good indicator for your own experience.
I had a total hysterectomy a week ago. I am due to have my staples removed tomorrow. I felt frightened when told I had cancer of the womb. I hope it has been removed. I was ok at first, but now i am feeling a bit depressed. I think I have done the right thing. With what I have read my chances are good, I was rather surprised to realise I was now nearly 60, where did my years go, I still feel 40, I was told my back muscles were strong, I looked fit and well, you never know do you, when you are hiding something nasty inside you. I wanted it gone, removed and destroyed. I feel very down tonight. I want to feel the optimism. I hope that my chat with the consultant in a few weeks time gives me good news, and I wish all you women out there the very best of luck
Well, you’ve come to the right place for support Lynda. I hope you’ve found the forums helpful too.
Although I think surveys like this are extremely useful I do have a problem with the final question – 18. If you were able to go back in time and make a different choice, would you still choose to have a hysterectomy?
Why is there no option for ‘There was no choice’?
Four weeks ago I was diagnosed with an extremely rare caesarian scar ectopic pregnancy and after a 2 week wait they whipped me in for surgery. By then the foetal sac (fortunately? I had already miscarried the foetus) had embedded so much that the heavy blood loss during surgery made anything other than a hysterectomy an impossibility.
Of course I wouldn’t have chosen to lose my chance of carrying another baby but it was a life-threatening condition and at least I’m still here for the 2 children I do have. Hopefully the good days will soon outweigh the bad and I can start looking forward to things again.
That’s true Vicki and thank you for pointing it out.
I had suffered with Fibroids for over 14 years. Back in Nov 2010 I decided to go ahead with a Hysterectomy, after seeing my gynaecologist I started the process. To controll my bleeding and shrink my fibroids I was given a monthly injection (Prostap Ieuprorelin Acetate.) which switched my ovaries off in preparation. Unfortantly I wasn’t seen by my gynaecologist when the injections were prescribed. By Janaury 2011 I started suffering with Anxiety Attacks, Hot Flushes, Sleepless nights, Nausea, electric shock sensations, a dry vagina, low libido, I was unable to work and visited my GP 4 times in one week. Who was very supportive and explained I was having an accute menopause. Those two words ‘accute menopause’ were like slap in the face and made me go home and start researching the ‘Menopause’. Over the following days I surfered the internet and many web-sites finally coming across this web-site. I would like to Thank everyone at The Hysterectomy Ass and all the ladies who blog the site you have been my life saver, pre and post ob. It hadn’t surfed this site and downloaded my 101 helpful hints, then I would have had a different / diffcult hysterectomy and recovery. Thank You
Wow, that’s great praise indeed and I’m glad we were there for you when you needed us Jayne.
I’m almost seven months post-op (TAH) and, having found this website an absolute God-send in the run up to my own op, I’m very happy to complete the survey in the hope that my feedback might prove helpful to someone else.
Aged 36, I was suffering from complex atypical hyperplasia and – after a year of hormone treatments to delay things – was recommended to undergo hysterectomy to prevent womb cancer. It was a massive decision for me, as it is for every woman facing this option, made even more difficult as I’d always hoped to have children of my own. This website, Linda’s superb publications and the comments that we leave for each other continue to help and I’d like to say a sincere thank you for that. Every woman facing hysterectomy will have a very individual experience, but forums such as this website offer support by showing that there are others out there who can truly empathise with some, if not all, that you’re going through.
For me, the worst bits have been the emotional strain of deciding to proceed; fainting every time I stood up for two days post-op due to blood loss; dealing with a reaction to Clexane injections which led to two months of living with an open wound; and wondering if I’d be able to walk without clutching my stomach ever again (good news – I can!). The best bits have been realising what a wonderful support network I have around me in my family, friends and neighbours; finding a new friend in a fellow patient; and being fortunate to have a very approachable team of gynaecological and oncological consultants/doctors throughout my hospital care, as well as superb support from district nurses and my GP.
I still have questions (for example, is there a miracle cure for my swollen belly?!!) and no doubt will have for some time to come, but I just wanted to say thank you and good luck to all who might visit this site for information, reassurance or to pass on their own experiences. As I say to my gorgeous nieces – big hugs, ladies x
You are very welcome Nicky and I’m so pleased we’ve been able to help and you never know … one day there may be a cure for the old swollen belly syndrome
hi just filled in the post op questionnaire; I had my op at 9.30am on Wed June 8 and left hospital 1.30pm Fri June 10.
Had a pre op d and c on march 28 this got rid of the bleeding; had 2 zoladex injections 6 weeks and 2 weeks pre op to shrink fibroids (19 in total – I had been bleeding daily since xmas but had the problem pretty bad for 5 years my womb measured 23cm by 14cm) impact of zoladex loads of energy but night sweats!
with the bleeding stopped i embarked on keep fit and employed a personal trainer for core exercises and running 6 weeks per op – from being able to run just 2 mins i was up to 45 mins running 2 days before my op and I had lost 8 kilos. Also joined weight loss resources to monitor food intake and still doing this.
Went into hosp with the right mindset took arnica 3 days per and post op; spa tone iron supplements for 3 weeks before and still taking; peppermint tea for wind and fennel tea for water retention; I did not need painkillers from sat onwards; tummy still numb and swollen . Yes I was emotional just pre surgery as the drugs went in; more about a fear of not waking up!! But today I have packed the tampons and pills up hurrah! why did i put up with it for so long; will post again in 3 months
hugs to you all tracey xx
oh yes and i bought your book and swelly belly band a godsend!! and I had a sub total kept my cervix and ovaries at my request.
also I recommend a eye cover band for everyone and earplugs beeping machines and lights are a nuisance!
T x
40yrs, full hysterectomy – 6 wks post op. I had my post op check up today, and although I think my consultant is great, he is a little swift! I had a long overdue night out at weekend, and feel like I’ve pulled something close to my wound (i did a LOT of dancing). He kind of brushed it off, and said, painkillers, but I am worried it could be more than that. Its like a sharp burning pain, and is only when I make certain movements – but I havent yet grasped which moves to avoid. As I start chemo next week, i want to be in the best shape, and i just want someone to tell me this probably is nothing. I wish I’d found your site pre op, as I, like many on here, felt totally abandoned after I left hospital. There’s so little information provided by the hospital and i knew nothing. But reading your answers and other experiences, does help, and makes you feel not quite so alone
Thanks to all who have posted on this site!
I thought as others did that the after care would have been better from the district nurses – I had to return to hospital for my clips to be removed. I have made a good recovery though but even after six weeks still get tired if I overdo things. I still experience a tugging pain in my bladder when I go to the toilet, not sure if that’s normal but that and the fact that I can cry at the drop of a hat are the only things I cannot control and the ‘tropical’ moments during the night!
Thanks again for the advice and support I have felt. I feel as if there has been someone there and that I am not alone.
Just try to look on the positive side – for me, no monthlies and a huge financial saving on sanitary products!
You are very welcome and don’t worry, how you are feeling now is perfectly normal and will settle down given a little time and care (from yourself to you!).
I am so glad to have found this site. I had a total Hysterectomy (cervix, womb, tubes and ovaries) on 4th July 2011, The care from the medical staff on the ward was good. I did have some post op internal bleeding and had blood transfusion for this as my HB count was very low, however, since coming out of hospital after 6 days, you are left to it!
There should be some standard literature of the Do’s and Dont’s, Physio exercises, emotional issues, HRT, diet and exercise and what to expect during recovery. I am still in a lot of pain while using the toilet (both), I get up around 6 times a night to pee, I find it difficult to walk very far, I cannot stand up very straight which gives me back ache, I could go on, my point being, if there was some rough guideline as to how long things like this could go on for, it would be so helpful! Due to the lack of information, it is difficult to assess if you should seek medical advice, surely is would save a lot of anxiety for the patient, not to mention time taken seeing the Dr when it could be avoided by having good quality information.
Your comments are exactly the reason why The Hysterectomy Association was created in the first place Julie, lack of information was the number one problem cited 17 years ago and it is still the number one problem cited today. We are slowly making in-roads and we receive more referrals than ever from the NHS these days, so things are improving – it”s just gradual.
Thank you Linda for your prompt response, and I am sure all the ladies who manage to find this fantastic website are truly grateful, as I am.
You are very welcome Julie
Am 3 week post op. I would just like to add some info on HRT; I am starting to experience the hot flushes and thought HRT would be the answer so trotted off to Dr (ok not trotted, more like shuffled
), however, as I suffer migrain, I was told I would be very high risk of stroke and under no circumstances take HRT, I was pinning my hopes on HRT.
I have just started taking Menopace plus, this is an over the counter vitamin, its too early to tell if they are doing anything, but I will comment in a month or so. Here’s hoping!!
Wishing all you ladies a speedy recovery to a fun filled life!!! xx
You might find a book helpful too – you could try New Natural Alternatives to HRT by Marilyn Glenville which is one of the best in my opinion. We do stock it but we will charge post and packing to send out. All good UK bookstores will almost certainly stock it too. http://shop.hysterectomy-association.org.uk/products/New-Natural-Alternatives-to-HRT.html
Thank you for sendingme your booklet. It is 3 weeks since I had a total hysterectomy and a BSO and it is the first time that I have started to feel alone and uncertain about how the operation will affect me long term. I have looked at some web sites which are doom and gloom and if im honest scared me a liitle. I needed the op because of a massive fibroid. I feel much healthier than before the op but i am suffering from hot sweats and feeling very emotional …….which is not like me. Thank you for your support, x
It may not be like you Amanda, but it is perfectly normal and the hot sweats will be due to the menopause starting – now’s the time to sort out how you plan to manage the symptoms. We often suggest a book first which gives you loads of information and ideas: http://shop.hysterectomy-association.org.uk/products/New-Natural-Alternatives-to-HRT.html
Hiya …post op 4 weeks now. I have been really well until I had a sneezing fir a few days ago. Since them I have had a burning pain in my stomach just as though someone has sliced me with a red hot knife. I have taken pain killers and rested, and thankfully the pain is starting to ease. It has worried me as to what damage I may have done, have you any advice please
Thank you
A quick check up with your GP may be the order of the day just in case you have pulled something – it’s probably nothing to worry about but worth checking anyway.
In the HRT section it may be helpful to add a ‘free’ section – i am having testosterone and oestrogen but couldn’t add it so went for oestrogen only. Organon have now stopped producing implants in this country and I think this sort of info ( in the survey) is useful to the NHS as for some people implants are really useful and if patches aren’t tolerated using gel designed for men (which is ok in some cases but prescribed off license) is our only testosterone option.
Thanks for that Liz – I shall update the questionnaire now that I know there are some question marks over the state of implants.
Hi Linda Had my hysterectomy on 14th April 2011 and am 6 mths post op today (14th Sept 2011. I have now gone back to my keep fit class once a week and feel great for the gentle exercise, however, I still feel I have a way to go in my recovery, still get aches and pains in tummy and the dreaded sweats have started but only at night. Am coping well and feel much better after having 6 years of continual bleeding, Thank you so much for your web site, and for your book, it is so helpful and re-assuring, also it’s great to feel well again! lots of love Rosemary X
What a lovely comment to leave Rosemary and thank you – you’ve really made my day today
It’s not unusual to feel that you are still recovering 12 months on – this is major surgery after all. The trick is to be kind to yourself still.
I don’t know where my head would be without this site. Before my STAH + BSO a month ago, I was very focussed, not worried, I just wanted to get on with it and start to live without constant pain, flooding, etc. No-one prepares you for the ‘after’ part. (I will say that my hospital care was excellent.) As Julie said, there is no guide as to what you should bother the consultant or gp about, no time frame on feeling better. Thanks to the girls on this site, I have received reassurances about basic things that have changed in me (the dreaded bladder & bowel thing, hrt info, pressure to return to work). Even though I don’t feel that great yet, I realise that there is some way to go, but to stay as positive as possible and get a tiny bit fitter day by day. My Gyn has brought forward my follow-up appt from 7 wks to 5 and I am worrying about the histology news. Breathe deeply and slowly, I guess. Thank you, Linda – the site gives us much needed support. xx
Why thanks Gen – that is a lovely thing to say and it is heartwarming to know that we’ve been able to help you both prepare and recover too
Hi had tah on the 11th of July 2011 am 14 weeks post op gone back to work part time still get very tired and still get some pain in belly and back and groin of left leg am sure it will get easier and am glad I had it done . It’s just nice to find a site like this were you can get support from other women my family have been brilliant.
its only been 2 weeks since my tah/bso
and i have been on the website everyday and the emails also keep me going
i have got so much support and advice i feel we should be given this website before or after having hystorectomy keep up the good work this site is invaluable
Hi All
I am just 22 days post op (abdominal hysterectomy) and like many have been left to my own devices! No explanation as to why my insides felt as though they had been battered by a heavyweight boxer! Weirdly, the left side of my bikini cut closed well but the right side has taken longer and was weeping. It began to smell funny so I called my GP and she came out with 7 days worth of anti-biotics. Since then I am feeling better. I am a gym bunny and it’s really difficult to know what I can and cannot do in respect of exercise. However, over the last week i began walking for 15 minutes daily and have now increased this to 40 mins. My major concern is the kangarro pouch that i now have in place of my lower abdomen (not aesthetically pleasing to the eye! When does this swelling reduce?Sometimes it feels softish and sometimes it feels a bit firm…Is this normal? I suspect the odd tingling/stab is to do with the body repairing itself so I can cope with that.
Never in a million years did I think the day would come when I would slow down! But please take it from me, you need to wallow in the recovery period…and get your 8 hours sleep.
This site has been a blessing, because every other site I visited made me think that if i move my toe everything would fall out!
I will keep all posted and look forward to reading everyone else’s experience.
The swelling will reduce but it takes time (months in fact for it to go completely). If you think about it as you would a sprained ankle, the more you use it the more swelling it has as you use the damaged muscles, they do heal but in their own time.
Hi, I had Tah 12 days ago – and I am also amazed of the little information out there on something that 1 in 5 or 1 in 3 depending where you look, has some sort of hyst – my concern is that on one side of the cut it is quite hard and lumpy and there appears to be a pull on the same side down into the outside lip of the vagina – is this normal due t swelling and internal stitching? great site thank you Vibeke
It might be worth revisiting your Doctor to get an opinion on it. Probably nothing to worry about, but always worth checking when you aren’t sure about something
I had my hysterectomy 1 month ago. Nov 3, 2011.. As soon as I was in recovery I had nothing but problems, When I was taken to my room in hospital I had severe heart palpitations, anxiety, I could not sleep the whole time there.. This whole month of recovering has been the worst. I have SEVERE anxiety, insomnia, UTI infection from the catheter, I have been to ER and UC, Primary dr, Obgyn several times this month. Several tests have been run and they thought I had a blood clot going to my lung, but CT scan was normal..I am on anxiety meds, sleeping meds, antibiotics and suffer from depression because of the surgery.. Before the surgery I was a happy person minus the issues from bleeding all the time, endometriosis. Now I need to see a psychiatrist, I have been home bedridden because of the anxiety & depression..I wish I never would of done the surgery…I also suffer from dizziness, nausea and have been bleeding 2 weeks after the surgery and still continue to bleed. I need answers ad my obgyn just wants to shove anxiety meds at me..Will this ever go away?? Anxiety has ruined my life and I am scared for my future having all these symptoms..
Hi Debbie, I’m not sure what I can say that will make you feel better. Your reaction is unusual and it could be related to anything. Linda
I had a total abdominal hyst on December 20, 2011 with a bikini incision. I have question on what to expect after this procedure. I am 43 y/o married and a mother of 2. How soon may I return to work, what kind of chores I can’t do. When is sex safe?
I am so glad I found this site!
It might help to have a look at our FAQ’s as they may answer the questions you have. You can find them here: http://www.hysterectomy-association.org.uk/index.php/category/faq/
I had my hysterectomy on 29 December 2011, due to a cyst on my ovary. Which thankfully was benign. My specialist said he could take just the ovaries out but if there was anything I would have to have another operation. The specialist I was recommended to was very good but if I had had the operation on the National Health I would have had to wait longer, so I opted for private, which was done and all over within a a week after consultation. I had my operaton at 5 p.m . on 29th December and although I was booked in until Sunday 1st January, my specialist said he would let me out on Saturday 31st as I might as well rest at home as in the hospital, which I totally agreed. However like many of your readers of the forum I had no back up whatsoever, I was told if I had any trouble just to ring up, but that was all. You do feel totally lost and as the days go on I think you feel even worse. I had to go back on the following Thursday to have my external stitches out, the nurse at our health centre said “well I haven’t seen this method for a long time”, as it was a little bead inside my tummy button and one at the bottom of my abdomen, which was easily pulled out but didn’t give me much confidence in her as she wasn’t sure how to start. I just wish there were more centres where people can talk to each other. My worst experience has been the wind and bloating especially at night, which makes it feel worse. I have still got this to a certain extent even now and it is four weeks since my operation, is this normal and can it go on for weeks. Thanks for letting me put my feelings down Linda, and any contribution I can give I will.
I am 13 weeks post op and I have had no backup from the consultant in fact he told me in recovery room that he didnt want to see me again… Initially the only problems I have had are immediately after having catheter removed I started to have a temperature and the next day when the drain was removed the reason for being ill was the “large” amount of tubing that was inside me 2 meters!!? The nurses were even shocked. The only other complaint I have is the key hole stitching one side fell out completely and the other was stitched up so tight they have taken skin from my groin so I now have an overhanging “bullet hole” on one side, my cervix was removed but also not stitched up properly so the healing is taking so long, I have had smelly discharge and now have thrush from the anitbiotics, my recovery was supposed to be quicker with keyhole but the whole experience has left me feeling a bit weird and so exhausted, I am glad I had it done now as things are slowly getting there.
My main question is I have one Ovary now and am not on HRT I dont feel any symptoms of menopause (Idont think) The thing is I feel nothing and like my brain has been replaced by dough its like they removed my brain instead of my womb… My dad is Teminally ill at the moment and I feel its all overwhelming me and I am supposed to be going back to work next week… I have wonderful support with family friends and work but I dont feel engaged by anything the thing is I am happy positive and fulfilled otherwise this webiste has been very helpfull I wondered if anyone can offer advice to whether its normal to feel like this. All the comments i read make me realise I am not alone to have these feelings comments please
If I were you and we’re able to I certainly wouldn’t go back to work yet, you sound like your not fully fit yet, and there’s to much emotionally going on for you. I too had horrendous amounts of tubing in my TAH drain site, it still hurts now only 3 weeks after op. Take care. Karen:-)
I am now 6 weeks post op TAH BSO and sadly like you my mum was terminally ill at the time of my op. She sadly passed away 17 days post-op so the 4 days prior to her death I had to be with her virtually 24 hours in a hospital 50 miles from my home. This was unbelieveably hard for me physically( especially since i bled post-op and needed 6 units of blood and god knows what else). However having said that am now feeling reasonably well physically… emotionally not quite sure really. the hrt doesnt seem to be a problem, feelings about hysterectomy pretty much drowned out by grief and generally feel a bit numb. I am however a natural optimist and dont feel down in general.just unhappy and sad about events. I do feel though that all of this is just part of being alive and dont be afraid to feel it , it wont last for ever nothing ever does.
I hope this helps
I feel your pain
thanks for the support and info from the website and booklet. I had my operation in January this year and although I have healed well there has been little support from the hospital, or consultant on discharge from hospital I was just told that is it now we don’t need to see you any more. No advice about exercise, recovery etc the information from your booklet was invaluable.
As a self employed foster carer I haven’t been able to officially take time off but the support from family has been fantastic as tiredness has been the worst part of my recovery. Although I feel well the temptation to do too much too soon is great. My best advice would be listen to your body, if you feel tired rest, if you feel ready to do more then do it. Don’t feel guilty about asking for help, plan for your recovery think of those things you wish you had time to do, books to read,music to listen to and use this as time to catch up.
Hello, I had a vaginal surgery 14 days ago and feel really well, however I would have been due on my period and I am having all the symptoms – period pains, feel like I am bleeding. Is this normal?
Many thanks
Lou
Hi Louise, yes that is normal – you will still have a cycle and may experience similar symptoms to those of your previous cycles, but they should lessen in time.
Had Hysterectomy Oct 2010 because of fibroids, kept ovaries. Damaged my bladder.fitted with stents & catheater. Had terrible bladder contractions resulting in trips to A & E. pain worse than child birth. Numerous water infections, E-Coli. Had blood transfusion. Lost so much weight my Surgeon did not even recognise me when I went for follow up appointment.
6 months off work & i am still having problems with bladder. Urine flow is very slow, do not feel when i need to go to loo unless bladder is so full it causes me pain.Still more tests to go but thinking it will never be right again.
I now want my ovaries removed because of cysts, do you think this would be advisable??
Rose
I have no idea Rose, I think that a chat with your GP is in order first and then a referral to a gynaecologist.
Ive only just discovered this sight and think its brilliant. Its nice to know that im not alone! I had my abdominal hysterectomy eight days ago and although ive been taking it really easy I feel like every thing is bearing down in my stomach. Its not that painful really but just a very uncomfortable feeling. I have had showers, however i have disolveable stitches, but I really want a soak in the bath, will this be ok? Also ive been putting ice packs on my stomach and dont know if im doing the right thing. Any advice please guys
It might be wise to avoid being in a bath until your abdominal scars have healed – you don’t want them sitting in dirty water and possibly getting infected