A hysterectomy can be hard to deal with physically and emotionally. Our forum members can help you cope through shared hysterectomy experiences.
Some members have been talking about total hysterectomy (sometimes known as a simple hysterectomy) where the surgeon removes the womb and cervix. Others are discussing radical hysterectomy where the surgeon also removes the upper part of the vagina, pelvic lymph nodes and tissue surrounding the womb and cervix.
Whatever your experience, it can be really helpful to be able to talk to real people who have been through a hysterectomy.
How our forum members support each other with hysterectomy
When you are facing a hysterectomy and you’re not sure what to expect, you can chat things through here on the Community. Prior to surgery or hospital stay, you might find it helpful to talk about your feelings and ask questions in the Community forums.
“Hello, I'm 71 and facing this. I am a widow living on my own. Seems that I am not the only one whose polyp turned out to be cancerous. I had hysteroscopy in mid December and then was called in for MRI on 30th December. I was called on Monday to come in today to meet with consultant. I pretty much expected that it would be bad news...Apparently they will discuss whether I will have a hysterectomy on its own, radiotherapy on its own or both.” Community member, womb cancer forum
“I’m due to have my surgery in 2 weeks time. I just received my letter off my gnae oncologist and I found the medical terminology really scary, especially the risks involved!... I’d be grateful if anyone can tell me what it’s actually like post op?” Community member, cervical cancer forum
Support from the ovarian cancer forum - how long did you wait for your surgery?
Members of the ovarian cancer forum have been supporting each other through questions about hysterectomy. You can click on the link at the end of the quote to read the full conversation.
"Keen to understand how long you waited for a hysterectomy after the initial surgical consultation?" Community member, ovarian cancer forum
Treatment options and timescales might differ, depending on your specific circumstances. Some members mention having a laparoscopic hysterectomy. Others might have been through an abdominal hysterectomy or a vaginal hysterectomy.
Support from the cervical cancer forum - talking about pain and tips for recovery
Members of our cervical cancer forum have also been supporting each other.
“I’ve had more major surgery of which a radical hysterectomy was effectively one part, so I do have experience. Post op you’ll need to take it very easy and not overdo things as it’s a major operation and you’ll have a lot of healing to do. I’d recommend stool softeners for afterwards as you don’t want to be straining for bowel movement, and a cushion for your tummy if you’re coming home by car. No lifting of anything more than a mug of coffee and plenty rest as you’ll be tired. Anything you particularly want to know and I’ll try and help from my own surgery experiences.”Community member, cervical cancer forum
Whatever type of hysterectomy or type of surgery you’ve been through, our members recommend that you allow yourself plenty of recovery time, both emotionally and physically.
“Yesterday I had a radical hysterectomy and I've just woke up so emotional, in pain and lonely. I guess being busy with the girls all the time I've never stopped and thought about what's actually happening/happened. My husband, my friends and family are great but it's hard to get across how cancer affects you mentally. Is it just me or does it always feel like it's happening to someone else...? And now after the operation part of you is gone...... but a bad part of you that had to go.“ Community member, cervical cancer forum
Empathy and support was soon provided from the lovely members in the forum.
“You’ve been through a lot in a short space of time, and it’s natural to feel a bit shell shocked by it all. It can be hard to process everything when things are such a whirlwind, and you have a major operation like this, so don’t be hard on yourself. A number of ladies in the group have had a radical hysterectomy so will be able to identify with your feelings and I hope they’ll come along and chat.” Community member, cervical cancer forum
“Recovery can be tough, especially with 2 little ones, so I hope you have plenty of practical support when you get home with meals, housework and looking after the girls as you’ll need to take it very easy. You’re going to be tired and need a lot of rest, and no heavy lifting! You have a lot of healing to do inside, so even when you might think you’re feeling fine and can do stuff, you still need to take care of yourself.” Community member, cervical cancer forum
Support from the vaginal cancer forum - follow ups after hysterectomy
Members of the vaginal cancer forum may have also been through a hysterectomy. Whether you had your surgery 25 years ago or more recently, your shared experience is valuable.
"Just thought I would share some tips with you on getting diagnosed. I under went a hysterectomy 25 years ago for repeated abnormal smears." Community member, vaginal cancer forum
There is usually someone here to chat through what you've been through and what to expect next.
Support from the womb (uterine and endometrial) cancer forum - help with recovery
Members have also been supporting each other through hysterectomy in our womb cancer forum.
“Hi, I'm new to this forum. I was diagnosed with stage 1 endometrial cancer 6 weeks ago and had a full hysterectomy 4 weeks ago today (robotic laproscopic)… Now this week, I feel weaker, more down, I've had some bleeding and my tummy feels bloated and weird again. I feel like I am moaning when I should just be glad and be getting on with getting back to normal…Would be great to get some more about people's timescales for recovery from hysterectomy if anyone could share.” Community member, womb cancer forum
After your surgery, it can be helpful to speak to people who really understand, because they’ve been there themselves.
“You’ve/we’ve had a major operation along with all of the emotional stress and trauma of a cancer diagnosis. Let’s give ourselves a break and accept we don’t have to get back to normal any time soon - as frustrating as that may feel. My boss reminded me this week that not so long ago women were in hospital for several weeks following a hysterectomy so maybe it’s too much to expect to be feeling normal again so quickly!“ Community member, womb cancer forum
Diary of a hysterectomy - what to expect
A member of the womb cancer forum has taken the time to share a diary of their hysterectomy experience. Thank you so much for sharing your experience with others.
“My lovely consultant/surgeon came to say hello and chat things through, also made me laugh and left me feeling confident and reassured. So now I’m sat here waiting my turn which shouldn’t be long now.” Community member, Hysterectomy day and after diary, womb cancer forum
You can read through the diary by clicking on the link above. You can also use the links at the end of each quote to read the full conversation throughout this whole blog.
If you are due to have a hysterectomy or are recovering following a hysterectomy, why not join in with the conversations in one of the forums? If you're new to the Community, it's usually a good idea to add some information to your profile and introduce yourself in the forum with a new post.
If you're looking for more information from Macmillan on hysterectomy, you can find this below.
More support and information from Macmillan about hysterectomies
Hysterectomy information from Macmillan
Cervical cancer - before and after surgery
Ovarian cancer - having surgery for ovarian cancer
Womb (uterine and endometrial) cancer - hysterectomy
Related blogs from the Macmillan Community team
Cancer and the menopause - looking back on menopause awareness month
Being bodies - vaginal dryness
If you have any questions, or help finding the right support, you can comment below or email the Community team on community@macmillan.org.uk
