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Hysterectomy side effects?
Peta
21 Posts
Hi there. I've just been diagnosed with cervical cancer and have been told I have to radical hysterectomy.My appointment at the cancer centre at Sunnybrook is in two weeks, and I really would love to talk to some women who had had this done. I have SO many questions about the side effects of a radical hysterectomy and I'd love to hear if women have had any...
29 Replies
PaulaC123
1 Posts
Hi Peta.
I had the same procedure 2 years ago. I had laparoscopic surgery and other than tender in the areas of where the instruments were put in along my bikini line for about a month, there are no scars. I had some hair loss, likely due to changes in hormones, but that is pretty much back to normal. There may be some incontinence issues in the beginning, but that also eventually goes away. The worst part for me was, the catheter sat directly on the nerve that made me feel like I had to go to the washroom ALL THE TIME. But once that was out (2 weeks!!!) I felt a lot better. Emotionally, this situation was very hard on me. I needed counselling after and I have continued with it. Physically, I am completely back to normal. Or maybe a better way to say it is I have adjusted to the new normal for me. If I could give you some advice, participate in all the activities available to you thru the centre. I found it so comforting to be with other cancer fighters, and people you can talk to about it who just know. Good Luck and check back in on here to let me know how you are. Sending positive thoughts to you.
Peta‍ I had my hysterectomy in February of last year. In fact, I've had many surgeries over the years. My first surgery was a mastectomy in 2011 for breast cancer. I have multipe D&Cs and then had my tubes and overies removed. My doctor didn't want to do a hysterectomy. Ultimately I developed pre-cancerous cells so the decision was finally made.

With all these surgeries I managed to recover faster than anticipated. At this point I have not had any problems. I was worried because my mother had so many problems; however that was sooooo many years ago.

Hang in there. Everyone's experience is unique to some extent. I like to believe that everything will be okay until proven otherwise.

cancertakesflight
Peta
21 Posts
Thanks so much for the reply.
I was feeling quite positive about it, well kind of. Thinking, no more periods...get rid of the cancer...win, win.
Then as I was doing some reading I stumbled across these two articles:
http://www.hormonesmatter.com/post-hysterectomy-skeletal-anatomical-changes/
and
https://lowninstitute.org/guest-post-the-madness-of-unnecessary-hysterectomy-has-to-stop/
And now I'm feeling really stressed, scared, upset and wondering what my options are.
Is anything in these articles true? Do you have any chronic back, leg and hip pain from the procedure? Does your rib cage "fall into your hip bones"? Is long term incontinence/bladder issues something that is a definite?
What about sex? Should I expect orgasms to be less intense as there's no uterus anymore?
I'm SO sorry I sound so naive, this is all new to me, and I'm just getting to the point where I'm really starting to freak out. I don't know anyone who's undergone this treatment, and I guess it's a lot more serious than I thought it was.
Many thanks,
Peta

DMT
186 Posts
Peta‍ My goodness those two links are awful! JMHO!. I had a hysterectomy at the age of 26, in the late 1970’s due to cervical cancer. So no kids. Other than having a long recovery, I don’t feel that the hysterectomy itself caused any long term problems. My ovaries were not removed, so had a normal menopause in my 40’s. I think it would be beneficial for you to have a talk with your surgeon, your GP, and anyone else that you feel you can have an informative discussion with.
Peta

welcome to the community.

I took a quick glance at the two articles you posted. I noticed the first one is about 8 years old. You have heard from a couple of our members already with their recent experiences. I hope that gives you some comfort. I am including a link from cancer.ca on surgical procedures for cervical cancer and at the end of the page, there is a link for questions to ask tht may be helpful for you.
https://www.cancer.ca/en/cancer-information/cancer-type/uterine/treatment/surgery/?region=bc

I hope you find this helpful and will give you the tools to discuss this with the oncologist . You may also want to call our Cancer Information Helpline at 1-888-939-3333

Keep us posted

Lianne
Cynthia Mac
3872 Posts
Peta‍ , I went through a “scare” with cervical cancer when I was in my late 20s. I had gone through years of treatment for growths before they found pre-cancerous growths in my cervix, at which point, they took them out and I didn’t have any further treatment. So, in a way, that’s were our stories part company.

I wasn’t planning to have children, even at that age, so if they had told me they had to do a more extensive procedure, I don’t think I would have minded so much. I encourage you to do whatever you need to help you with whatever struggles you are having, and if I can help with that, I’ll be here.

Just a general comment for people doing on-line research, when I was doing this for my Dad’s cancer (lung), someone said, “Don’t look at any studies further back than 2-5 years because chances are anything older than that is out-dated.”

I went through “natural menopause,” and I will say, that some women handle *it* better than others, even in the same family. One thing I’ve learned is that plucking a few hairs out of my chin every couple weeks is a lot easier to handle than the PMS I went through every month before menopause!
Peta
21 Posts
Thanks so much DMT. I have no idea whether the articles are like two random outliers...and just kind of super scary....or are like most women's experiences. So it's super comforting to hear that it's not your experience. I'm just such a mess right now. Especially after reading those. My appointment at the cancer centre at Sunnybrook is until the 24th, but I am seeing my GYN on Thurs...so I'll talk to her about it then. It's just so much info. It's all kind of hard to decipher, especially because I can't have my partner in with me at appointments right now (COVID) and I don't know what information is even important!
Peta
21 Posts
Thank you so much for the link Lianne. I will take a link now.....
Kuching
375 Posts
Peta‍ , just to add my two cents’ worth. I had a hysterectomy in my late 40s, over 20 years ago. Not for cancer. I was back at work within a month, and had absolutely no side effects at all. No aches and pains, no feeling of anything different inside, no change in sex life. In fact, if I had to do it over again, I would have had one a lot sooner! I still have a faint bikini line scar if you know where to look, that’s it. Take a deep breath, you’ll be fine!
Cedar
41 Posts
Peta‍ Of course, everyone's experience is different, but I can share mine. I was almost 65 when I had a complete hysterectomy including ovaries in late 2019. My physical recovery went well, the anxiety and fear of recurrence took a bit longer to subside. I met with a pelvic floor physiotherapist (video conference because of Covid) who suggested a series of exercises to strengthen the Pelvic Floor and also explained the reactions of my body to the trauma of surgery and radiation. I found this helpful. I am now a year post radiation, am cancer free, have none of the chronic issues you fear, incontinence or hip/leg/back pain. Sex isn't quite at the same level of intensity it used to be, but my understanding is that nerves will regenerate, it just takes time. I think this damage is due more to the Brachytherapy radiation than the hysterectomy itself.

I didn't read the links to the articles that got you worried, but as others here have said, the information may not be accurate. Feel free to ask any further questions, this site is a good place to learn and connect with others in a similar situation.
JustJan
1540 Posts
Peta‍ I was 59 when I had a total hysterectomy for ovarian cancer. A total
hysterectomy is slightly different than a radical hysterectomy but I would think the recovery would be similar. I had my ovaries, fallopian tubes, uterus and cervix removed. Mine was done laparoscopically and vaginally. So it was a minimally invasive. I was in the hospital overnight. I didn’t find the pain too bad but definitely did stay on top of the pain meds for a few days. I was told I couldn’t lift anything over 10 lbs for 3 months. No vacuuming, no laundry, no lifting grocery bags, etc. You may want to make sure you have some help with those tasks. I also made up some meals for the freezer so I would have something easy to eat.

I had already been through menopause so I did not have that side effect of the surgery to deal with.

Wishing you all the best for your surgery. If you have any specific questions please let me know and I will do my best to answer.
elle29
1207 Posts
Isn't Lap great for healing too and less invasive then cuts through layers ofskin muscles whatever .They tried for moi at UHN . But had no cuts of any skin , delivery by just Trans vag . Was so great not to have it this way as I was considered obese & term still used it 60lbs over 💩 Hate that term so discriminating . When there Islas of blood 🩸 too !
Well if they could come up with a better procedure for Mastectomy then removing everything to the bone practically and the excruciating pain . Someone was left with open wounds too got botched ! Aand taken back for more surgery even worse . OMG that is a large area to heal on the chest ! How many hours and how large is and loss of both beasts incision for Mass?.
Lillee
137 Posts
I had my hysterectomy in 1988 when I was 36 years old.

Is anything in these articles true? Do you have any chronic back, leg and hip pain from the procedure? Does your rib cage "fall into your hip bones"?

I have never heard of any of this and I have talked to a lot of women who have had the surgery

Is long term incontinence/bladder issues something that is a definite?

Again, not for me or anyone I have spoken to over the years. A few have had a problem but mine was due to a prolapsed bladder after childbirth. Kegel exercises helped but I eventually had a bladder suspension done and that solved the problem for years. About 5 years ago I started leaking again but the Kegel exercises stopped that

What about sex? Should I expect orgasms to be less intense as there's no uterus anymore?


Years before I had my surgery I heard an older woman say that having her hysterectomy was like taking out the cradle and leaving the playpen. No more worry about pregnancy and lots more fun. I have to agree wholeheartedly. In fact I never had an orgasm before my surgery and even now when I am 68 I am getting the best orgasms of my life.

There is one difference though and that is that without the cervix sex can be less painful if he is long and tends to hit the cervix which can be painful. No cervix means there is nothing for him to hit so no more pain.
Sadie12
174 Posts
Hi Peta
I had a radical hysterectomy in October that included removal of uterus, ovaries, tubes, cervix plus lymph nodes and omentum. There was 2 litres of fluid removed from my abdomen because of a large mass. I had ovarian cancer, Stage 3...so I wasn't even considering not having it. My (male) gynecologist suggested that my sex drive would go down with removal of both ovaries, but at 57, I only probably had 3 years left of any sex drive(!) anyway...I was more floored by that statement at the time than any other information.
I chose to have both ovaries removed because I felt it was better for my long range prognosis.
Because of the extent and size of my cancer, I had to have the midline cut...so my scar is from below my public hair to about 3 inches above my belly button. My surgeon did a great job, I am proud of my beautiful scar.
I spent 3 nights in the hospital. I had an epidural in the hospital what controlled the pain relief. I had a hard time keeping down food in the hospital and I was turned off food when I got home for a while. I was sent home with some opioids...but I think I only used them 5 times. I did use Tylenol. Recovery was stressful only because I had a 12 lb baby at home (not by my birth) that I couldn't lift and had to have help around constantly. I recovered very well. I'm still doing the chemo which I've managed well.
I still have a sex drive. The first time having intercourse again, I was very nervous that I'd feel pain or something...but nope. Happy to say sex life (with orgasms) is good.
Feel free to message me if you have questions that need more explicit answers...
Best wishes to you
Sadie12
Peta
21 Posts
Hi Sadie...How long was it until you could walk? I'm also having the midline cut. I will be in hospital for 3 or 4 nights and going home with a catheter for 10 days, how long until you could walk around the block?
Peta
21 Posts
Also.....I've just been moved from Sunnybrook to Princess Margaret Hospital. Wow. PMH is by far SO MUCH better. My experience at Sunnybrook and with the one Gyny/Onco there was sub par compared to how they treat you at PMH. It's. a big difference. If any one new is reading this thread and has the opportunity to choose...PMH all the way.
TJH
6 Posts
Hi Peta,
Just wanted to reach out to share my experience with you. I was diagnosed with Adenocarcinoma of the cervix in May of 2020. I had a radical hysterectomy (left my ovaries and removed several lymph nodes) in August of 2020. I also had the midline cut and am very happy with how everything has healed. I was going for daily (slow) walks after week 1 and was back to work full time after 6 weeks and to be honest I probably could have went back after 4. I did find that I tired quickly for the first several months after surgery but not enough to hinder my day to day activities I just needed frequent rest periods. The worst part of the recovery for me was the lose of feeling in my right thigh. I had absolutely no feeling in my thigh for about 3 weeks post op and very little after that. I was about 8 weeks before this was back to normal. The doctors said this was probably a side effect from having the epidural for pain management during and after surgery. ( I was under for close to 7 hours as they encountered an unexpected issue) As for sex, everything is just as it was prior to surgery, no noticeable changes for me. Looking forward to the day when I can hopefully be cancer free. :)

Wishing you all the best with your surgery and recovery, if you have any questions please ask
Cynthia Mac
3872 Posts
Replying to alert Peta‍ To TJH‍ ‘S post from March 24/21.
Peta
21 Posts
Hi @TJH....
Sounds very similar to what I'm having on Monday. Did you feel that the epidural was necessary? I'm undecided, but very nervous about the epidural. The pain management team called, and offered it, said it was recommended but I'm thinking of just the pain pen in my arm. I'm glad to hear you were walking within the week. Did you come home with the Catheter?
Peta
21 Posts
Sorry TJH , I forgot to ask...what items did you take with you to hospital that you felt were indespensible? I'm unsure what I'll need, beyond the regular toiletries etc (I'll be in for four nights). Is there anything you took in, or which you took in that helped with your hysterectomy recovery? Any heat packs? Wound recovery stuff? Compression underwear? How about for when you got home? Did you take laxatives? Does pooping hurt? Could you shower straight away? Sorry for all the questions.
DMT
186 Posts
Peta‍ I was 26 when I had my hysterectomy. Almost 70 now. I can still remember the pain when I was coming out of anesthesia. If I was you I would take all the painkillers offered!
TJH
6 Posts
Hi Peta,
I was told by my doctor that the epidural was the best choice for pain management so I went with that. It was placed quickly in the OR and was a very painless procedure. For me it was the right option but there are many others to choose from, you should pick whichever one you are comfortable with. I only had the catheter in for 3 days and had no issues with bladder function. I found the first couple of bowel movements extremely painful, I was given laxatives while in the hospital but ended up needing a suppository for the first bowl movement and then I was given more laxatives to take at home. I showered on day 2 and it was a little awkward with the catheter but manageable. The only compression garments I wore were the ones provided by the hospital for the first couple of days after the surgery. I just took the regular overnight items to the hospital with me, pj's, slippers, toiletries, and clothes to wear home. I would recommend loose fitting clothes and pj's as I did have quite a bit of abdominal swelling. If I had my time back I would have taken a robe, more reading material, a comfortable pillow and blanket from home as the hospital ones can be quite thin. I didn't have anything special once I got home just made sure I was resting when needed, not lifting anything and eating a healthy diet and getting lots of fluids. Please reach out again anytime and if you have anymore questions just let me know.

Hope your surgery goes well and recovery is speedy. :)
Sadie12
174 Posts
Peta‍ - If I remember correctly, the nurses had me up either in the evening or next morning of my surgery while they held me arm to start walking. I was walking in the hospital floor - like a small city block probably day 2. I think Day 4 or 5 (I'm thinking I must have been out of the pajamas/IV by then so it must have been the day I went home), I did some stairs slowly and went to the gift shop. When I got home, I walked a bit further each day. FLAT ground...I tried uneven field trails, not good. I restarted yoga about 6 weeks I think...at home, short stints, easy poses.

When I met my surgeon, I said 'no opiods for me please'. She said...oh, I'm going above the bellybutton, you'll want good pain-relief. I had an epidural with an override button in the hospital. I used it. I remember vaguely waking up while being transported...(out of surgery?) and starting to cry in pain....within no time at all, they had it managed. The epidural was good to have. The pain team came in a few times during my stay to make sure I was doing okay. I was.

I believe that I had the catheter in 3 days.

I couldn't eat for a couple days...the first time I tried to eat something, I vomited it all up. My taste for everything was off during my stay at the hospital and continued for some time after getting home.

Everyone kept asking if I had passed gas yet. A lot of pressure! LOL...It took me a few days. Then on discharge the doctor asked if I had had a bowel movement...I guess she could tell from the look on my face...she quickly said 'No, I'm not making you stay until you poop'. I think it took me like 6-7 days(!) or something to poop after surgery. I feared it, but with 7 days of mild laxative...it was not an issue when it finally occurred.

During the stay, the nurses came in with drugs routinely....something for nausea, pain relief and laxative. Also to check the vitals.
I also had an iron fusion during my stay.

My hospital had heat packs and a microwave so we could heat them as needed.

I was sent home with prescriptions for laxative, gravol, Tylenol, hydromorphone (very small number of those) and injectible anti-clotting drug (because of my age 57).

I was glad I had my internet capable cellphone plus charger and blutooth headphones. I had a knitting project and a book.
I wish I had remembered to bring earplugs (my roommate was lovely but liked to have the TV on all day and talk on the cellphone a lot).
Maybe some snacks.
I packed 3 new pj/nighties plus a new robe...only wore one set the last night after the epidural was out. I wore the hospital gown\robe because it was easier for the epidural.
A light pair of rubber sole slipons..that maybe you want to trash after your hospital stay or at least ones you can put through the wash.

Ask the person who picks you up to bring a pillow for the ride home so that you can place it between the seat belt and your abdomen.

I was told not to lift anything over 10 lbs until recovered. I didn't push it.
I was strongly warned by doctor and nurses not to have intercourse for - I think they said 6 weeks...but check with your doctor. Seriously, it was the last thing on my mind.

Good luck on Monday. Ask me anything else if I forgot...and let us know how you are doing.
Sadie12
Peta
21 Posts
OK...this is so good to know. I will get some ear plugs for sure, and make sure I have that pillow. I'm also wondering...with the swelling. Did it ever go back to normal? I've heard some people just always have a "pooch" after? And did you have baggy skin left over from after the procedure?
Peta
21 Posts
Thanks so much TJH‍ It looks like we're the same age, same procedure and I have three kids at home. Thanks for the advice. I ran off to Indigo last night (one of the few places open...and it's too late to order online for delivery) and picked up a robe and slippers. I'm also wondering with that swelling. I've heard that some women develop a "pooch" that never goes away. Have this happened to you? Also has there been any excess skin from the procedure? Like kind of loose skin around the area? Sorry to sound vain, but I'm wondering if on sight everything will go back to normal or if I will expect visual changes.....has it been an emotional rollercoaster?
Thanks so much for all the advice.
TJH
6 Posts
Hi Peta‍,
No problem, happy to share my experience! I turned 43 this past November and I have a son who will be 14 next month.
My swelling did eventually go away but it did take a very long time, I had my surgery in August and it was the beginning of November before I felt all of the swelling was gone. I do find that the shape of my stomach has changed from the surgery but no loose skin. I had surgical glue instead of stiches or staples so maybe that is why? For lack of a better description, I find it looks like I now have a bum in the front lol. I am not a small woman (size 12 before surgery and size 14 now) so maybe that has something to do with it. It really is an emotional process, I still feel like I am living in someone else's body but I am trying to embrace the "new" me! This whole process can be mentally and physically draining and it is normal to have questions and concerns, no matter how silly or vain you may think they are they are valid and important and should be asked! The more you know the more prepared you will be. Again, my experience is mine and yours may be completely different but it helped me a great deal to read the experiences of others before and even after my surgery was completed. If there is anything else you need/want to ask please do so. :)

TJH
Peta
21 Posts
Thanks for all of that TJH.
Funny. I just turned 43 in March and also have a son in Grade 9. I'm amazed it takes so long for the swelling to go down...does it also take that long for it to no longer feel tender to the touch?
It makes sense that the shape has changed. I'll ask my Dr going in on Monday to do what they can, she'll think I'm paranoid, which I am, but anyway. A "front bum" LOL!! I know exactly what you are describing. I imagine that's caused by the scar?
And yes to the emotional process. I felt like I could barely breathe at times today. I was hoping that would go away after, but I'm sure I'm going to be a wreck after. I hadn't even given it much thought TBH. I've just been preparing myself for day of. Oh man. I don't know how I'm going to get through the weekend...it's all consuming.
Thanks again.
Peta
TJH
6 Posts
Hi again,
It wasn’t that long for the tenderness to go away, I was only tender to the touch for probably 10 days give or take a few.
I know how overwhelming it can be, I found that listening to my favourite music and practicing some good breathing exercises helped give my mind a break as I felt like I was on information overload in the days close to surgery.
I will be thinking of you and sending positive vibes for a speedy recovery. Please keep me updated and if you want to chat just send me a message.
TJH
Peta
21 Posts
TJH OMG that is EXACTLY how I’m feeling. Information overload. I can not read another booklet they send me. Me brain has stopped listening. It’s EXACTLY how I’m feeling.
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