Finally hysterectomy done: It has taken me... - Endometriosis UK

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Finally hysterectomy done

Rh7586 profile image
20 Replies

It has taken me 18 months of fighting but I finally had my operation on Friday. They removed everything except the right ovary. They had a few problems with getting the tube for breathing in and the camera had to go in just below my ribs due to mesh from a previous hernia repair making it difficult. I had a large cyst on the ovary and the fatty tissue surround the bowel had been caught up funny.

I was lucky that my op was on Friday afternoon but I was up washed and dressed by 8 the next morning and able to come home after lunch. The pain has not been too bad with paracetamol and ibuprofen just needing morphine at night.

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Rh7586
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20 Replies
Cuddlybarb profile image
Cuddlybarb

Congratulations on your surgery.

My hysterectomy was in November 2014 and I feel brilliant gynae wise!

They removed everything for me apart from my left ovary. It took me about six weeks to recover but probably three months for my energy levels to return to normal.

I only have a minuscule amount of pain which paracetamol sorts out. I have no torrential bleeding and I'm now working full time. (I could only work part time prior to surgery as my Endo was so severe)

I am so pleased you had your surgery and I hope you recover well. Please be patient with yourself and rest as much as possible.

Lots of love,

Barbara X

kelbel profile image
kelbel in reply to Cuddlybarb

Hi Barbara,

I hope you don't mind me messaging you, but I had a hysterectomy last Monday, ( laparoscopy, moving onto a laparotomy). I have a 12" cut as my uterus was so swollen they couldn't get it out, both of my Fallopian tubes were infected too so they have been removed along with one ovary!...like you though I still have one left.

My question is, I know it's very early days, but did you feel as though you had been hit by a truck!?.. Obviously moving is painful, but I just can't sleep, lying down is painful and being sat down all day too, I'm just not tired!... was it long before you started to be able to move normally, sleep normally?

Any advice would be welcome. Take care

Kelly xx

Cuddlybarb profile image
Cuddlybarb in reply to kelbel

Hello Kelly.

Yes I did feel as though I had been hit by a truck... And I only had keyhole hysterectomy !

I didn't lay down for the first ten days, so I slept in a chair when I could but I kept moving around every few hours.

The key to recovery is to rest when you can and sleep when possible. You must also take regular pain relief as this will aid recovery.

After about two weeks I started to move around easier and started to feel as though I was on the road to recovery.

Please taKe care and be patient with yourself.

X

Sammyed profile image
Sammyed

Congrats!

It sounds like youre on your way already to full recovery. Can I ask how old you are? I've heard that hysterectomy is rare on younger patients?

Thanks

Sam

kelbel profile image
kelbel in reply to Sammyed

I'm not sure if you are referring to my message Sam, but I'm just 40.

Xx

Sammyed profile image
Sammyed in reply to kelbel

Thank you for the reply. I really appreciate it and hope this message finds you well.

I am going through a rough patch with the endo at the moment, awaiting consultant appointment following a recent trip to a&e. This was touched on at an earlier appointment but as I'm only 32 was brushed aside as a no-go.

It's great to hear from someone as young as 40 undergoing the opp although who knows what the consultant will say.

Get well soon and keep us up today on your recovery and tge effect on the endo

Bettyheslop profile image
Bettyheslop

Good to read your post, glad things are going well for you so far and you got to go home quickly.

I am waiting for a hysterectomy at the moment, I am looking forward to it being over with.

I hope your recovery continues to go well. Let us know how it goes.

Take care xx

JeanOsborne profile image
JeanOsborne

Hi Hun glad to hear you're doing ok. Had mine on Thursday mine was open surgery and was quieter complicated but the actual op went well. Had an internal bleed afterwards so need a blood transfusion. Came home yesterday and apart from mild discomfort I feel great. Very tired though. So glad I had it done.well be back to normal before we know it. Good luck Hun and take it easy.

kelbel profile image
kelbel in reply to JeanOsborne

Wow you are amazing JeanOsborne!!.. Like you I had to have a blood transfusion as I lost 2 litres of blood, but I certainly wouldn't describe myself as feeling great!!

I am so glad that you are recovering so well, tomorrow will be one week that I will have been home and I can honestly say I never realised it would be this hard!... The pain, trapped wind, exhaustion, being unable to sleep and move (without ease).

That said , it had to be done as my uterus was so swollen and my Fallopian tubes infected, so it's no wonder I have been so ill, for so long!!...

I have a 12" cut from one side of my tummy to the other as they couldn't get my uterus out!... It's all been a very distressing time!...

But if it means no more bleeding, then it's worth it as I would bleed for months, I never stopped!

Onwards and upwards ladies... Once I'm off of all my medicines (32 tablets a day!!) I will raise a glass of bubbly to all of our health and futures!

Kelly xxx

JeanOsborne profile image
JeanOsborne in reply to kelbel

I'll have one with you

JeanOsborne profile image
JeanOsborne in reply to kelbel

Hi Hun how are you feeling now?

kelbel profile image
kelbel in reply to JeanOsborne

Morning hun, I'm very up and down, I never realised it would be this hard!!... I have spoken to my Endo nurse to tell her that I'm losing a very weak pale bloody liquid, on and off and she said if it continues she will book me in for an emergency scan. It's just all so confusing as I have looked through proper hysterectomy books and they all say to lose a little liquid is totally normal up to at least 6 weeks after, yet she's saying it's not!?... It's all so confusing and I'm also having pain when I finish weeing, almost like my bladder isn't emptying properly! I told her this and she did say that is normal but to keep an eye out for infection!

The trouble is I just don't know what's "right" and what's "wrong", everyone seems to say different. I have pains, aches, sickness and other issues but no one to confirm that this is ok!?...

If I had the energy I would cry!! Thank you so much for thinking of me and checking up on me! I really appreciate it!

I hope you are ok and getting back to your "normal" self!!

XXXX

JeanOsborne profile image
JeanOsborne in reply to kelbel

Hi Hun I remember the first shower I had when I was in hospital. Afterwards all this liquid came out , almost like waters have broken in pregnancy (although that's a guess as I've never been pregnant). Scared the crap out of me but nurse said it was perfectly normal. Everyone keeps telling me to expect some bleeding but so far nothing not even a spot. The bladder pain I can really relate to . I had work done on uteras and bowel as both were stuck to uterus. I get really bad bowel spasms so I guess it's just all part of the healing process. I don't know about you but I'm not very patient and because other than theses few niggles I feel good just wish the rest would catch up. Just remember to take things easy but if you feel something isn't right then get it checked. Wishing you well and if you need to chat I'm here.

kelbel profile image
kelbel in reply to JeanOsborne

Oh that's really good to know about the liquid!! ... I do think it's getting less, so will just keep an eye on it!... I think that's the problem too , impatience!! .. Although I don't actually feel like doing anything ( it's all I can do to manage a 4 minute walk at the moment), but it is very mind numbing just sat looking at the same 4 walls everyday!!.... I think I just feel as though I'm not doing as well as I should be as my colleagues and friends keep texting saying are you better today?!... I have to keep saying no as its such a long recovery not much will change yet, it's only been 2 weeks!!... How long ago did you have yours again Hun?? Is your stomach still painful? Can you bend to wash your legs and feet yet!?? Lol

Thanks for the chat, it's so lovely to know you understand!

Xxxxx

JeanOsborne profile image
JeanOsborne in reply to kelbel

I had mine on 3rd March. I think I'm only doing so well because before I was in so much pain(although I didn't realise how much) that what I'm feeling now is nothing compared to before. Yeah I can bend to wash feet. I'm really stubborn though even the day after op when I was in so much pain and vomiting I still insisted on getting out of bed. Didn't manage it for long though as that's when the internal bleeding started and was ordered to get back in bed! Everyone heals at a different rate so don't be hard on yourself. You'll get there. Just try and stay positive and try and do a little more each day. When I first get up in the morning I'm so stiff and sore but as the day goes on it gets better. I'm not sure but I think they may have given me nerve blocks so that may explain why I'm not in too much pain.i do get a lot of pain if I need a wee especially first thing in the morning. When I first get out of bed it takes a good ten minutes before I can stand up straight. I'm very lucky that I have a wonderful husband who does all the housework and cooking, so that makes so much difference. It's nice having someone to talk to who is going through the same thing ,as I don't actually know anyone personally who has endo and had to have a hysterectomy. So we can be here for each other. Take care Hun.

kelbel profile image
kelbel in reply to JeanOsborne

Yes we can definitely be there for each other!!

I'm also very lucky as like you I have an amazing husband, I really don't think I could have done this without him!!... He's taken 2 weeks off of work to be with me, he showers me and washes my hair, cooks , cleans and basically does everything!! Lol... We are both very lucky in that respect, at least!! Lol

Keep in touch lovely and hopefully we will continue to improve everyday!!

Xxx

charliecat profile image
charliecat

Hello lady's. I haven't been on here for awhile but I've just read your messages and had to reply. I've suffered since I was 20 and I turn 40 this year. Last September I came off a 2yr course of zolodex injections and was dreading having it all start over again with pain and bleeding. This I think has caused me to have developed depression and anxiety and I'm currently on anti depressants? I've always been so strong as I'm sure all our lady's with this illness are but couple this with also my dad taking poorly and then passing away, I felt like I had truly been broken beyond repair?

I am slowly feeling a lot better but the endometriosis still hangs over me like ghost in a room. I have only had one period since September but it was very heavy and because my bowel is affected, this also causes pain. My consultant said he wouldn't do an historectomy as the endometriosis is affecting too many organs and would be difficult? I will be asking him again when I go later this month but was wondering if anyone else has suffered with depression as a result of this illness and if the lady's above believe they have done the best thing, having had historectomy? I also didn't know that they would leave 1 ovary in place and presumably this would stop the menopausal side affects coming back? Having just had these for 2 yrs, I was also unsure if this had caused the depression?

I wish all you lady's only the very best for the future and thank you so much for posting your experience as it really does help. Xxxxxx

kelbel profile image
kelbel in reply to charliecat

Hi Charliecat,

I am so sorry to hear about your depression and losing your Dad, I can't begin to imagine the pain you are going through!!... Endometriosis is such a hard cruel disease to deal with, it took the Drs 19 years to diagnose me, before that I was told I just had heavy periods, I had irritable bowel, countless scans and tests, but nothing identified until I had a laparoscopy 4 years ago, that's when they found stage 4 endo, covering my ovaries, bowel, Fallopian tubes, bladder and uterus!!..

I'd never ever heard of Endo! Since then I had tried every treatment with no avail, none of them stopped the bleeding, I would bleed for 3 months at a time with a 2 day break inbetween! Utterly draining... This caused me severe depression, anxiety and panic attacks, I have had to go part time, only working 3 days a week as I just couldn't cope working a full week. I was constantly fatigued, dizzy, sick, I would cry so much, my emotions were a mess!!... Normally you can control your tears, but I couldn't, my hormones were such a mess I would just break down and couldn't stop!

My depression has been extremely severe at times, I've had counselling to try to cope with this sudden disease and the loss of 3 children. All I ever wanted to be was a mum, I've now had to have a hysterectomy , where my hope of ever having a child has been taken away from me... I feel sad and empty and know this journey again will be a hard one, but my quality of life was so bad before I didn't feel I had an option!

Like I say I tried all treatments and nothing worked, Endo has affected my life, my marriage, my children and me mentally and physically!!!

I just pray now that as time goes on my life will improve, with no bleeding and limited Endo!!..

I hope everything works out for you and if you ever need a friend who understands, or a chat please feel free to private message me.

Love and hugs

Kelly xxx

charliecat profile image
charliecat

Thank you so much Kelly for your reply. It had never a cured to me until just recently that this thing going on with my head, could be linked to the constant struggle of having endometriosis?

I was diagnosed at 22 and this was the 2nd time of having the zolodex, yet again after having major surgery. I've always worked full time and am seeing now that this was the downfall. I've currently packed my job in as my mental state was just in bits and I had to elevate something. At the time my dad had been diagnosed as terminal and felt my life was just a mess. I can't understand why I felt so bad now and just collapsed? I'm very lucky that I have a lovely husband but even he didn't know everything that was going through my mind, until I recently plucked up the courage and told him. You see we have only been together 6 yrs and only married Dec 2014, I felt such a fraud?

My last relationship ended after 18yrs and 2 miscarriages, so didn't want to bring anyone else into my misfortune but my husband is older than me and a lot more caring. He has 2 grown children and we became grandparents 2 yrs back, so I think the choice of not having children is alot easier now. Only recently we have started to plan our life together and feel selfish to say but I'm happy not to have the added pressure of children to look after. It's something that will always be regrettable but who knows what else life has in store?

I've been on anti depressants for the last 5 wks and it's the best I've ever felt? Maybe something in the hormones of endometriosis causes a chemical in balance? I just worry now that the old feelings will return and crush me again?

I'm going to ask again about historectomy this week but wanted to know how people felt afterwards and although I don't have major bleeding, it's so very painful that I can't get out of bed. I've herd about prolapse of bladder after hysterectomy and wondered how successful you felt it had been?

I'm sorry for your loss of children but I truly believe that life takes us in different directions for a reason. If my husband and I really wanted the experience of children, then we would foster or adopted. It was something we did discuss and I felt that there was so many children out there that just needed to be loved. I think it takes a very special person to put themselves in the position to love all children and make a huge difference in a child's life?

Often thought is this the path I was supposed to go down?

Thank you again and only wish you the very best. Xxxxxx xxxxx

kelbel profile image
kelbel

Morning Chatliecat,

I can honestly having a hysterectomy is one of the hardest things I have ever done! That said I am only 2 weeks post operation so as I've been signed off work for 3 months it's still very early days!

I am hoping though that once this pain and recovery is over it will be the making of me. Since being diagnosed I'm not the "Kelly" I used to be, I have gone from a happy, bubbly, social person to a quiet, sad, recluse!!.. Apart from work I don't go anywhere.. The bleeding was so severe i couldn't go anywhere for fear of leaking or passing out... It's ruled mine and my husbands life for long enough, so like I say, hopefully once I am fully recovered and have no bleeding I will gradually become the "Kelly" again everyone used to know and love!

Good luck my sweet, it is a hard decision but a worthwhile one I hope!

Xxxx

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