I'm looking for ladies to share their honest stories of hysterectomy, I am hoping to make my next surgery my last and as I don't want children I'm pushing for them to take the lot, but would love to hear people's experiences....
How did it impact your sex life? (At 35 this is a big concern for me)
Did you find relief from the pain?
How did you get on with HRT?
How long did you take off work?
How long until able to exercise again?
Google has a real mixed bag of info so keen to hear the real thing from fellow endo sisters x thank you x
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Adele-84
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Hi, I am in the same boat as you deciding if the next surgery should be the last (41 yrs old and no kids).
Have you tried a menopause trial yet? I am in the middle of a zoladex trial to see how I got on with side effects and HRT. It hasn’t been the most straight forward and I would recommend trying this first to make sure you can cope being thrown into menopause.
Now the HRT is settling down it is great though! Pain is dropping on a weekly basis and now not needing daytime pain meds most of the time :-). If this is what I can expect post surgery then I am seriously considering doing it.
First month was a bit crap tbh. Consultant told me to expect worse than normal as it gives you a final wallop! It was more painful throughout the month and a short but really crappy period. After that I haven’t bled at all. Had hot flushes and really bad sleeplessness in the first month and was doubting if I was doing the right thing.
Started the HRT beginning of second month and it helped the flushes and sleeping straight away, but I had a hiccup with it as can’t tolerate progesterone (gives me crippling migraines). Now I have the HRT sorted it is brilliant. The pain is easing all the time and no periods so no flare ups. I have bowel adhesions so couldn’t go to the loo without nearly crying (sorry if TMI) but now it doesn’t hurt at all. I still am getting tweaks in the worst areas but nothing like before.
I won’t lie, the first 4-6 weeks were shite! But don’t let it put you off as it does get better and it is definitely helping me make up my mind about the surgery if this is what life without daily endo crap is like
Sex life did take a bit of a dive for a couple of months but now on testrogen gel and it is probably better than ever as no pain or discomfort.
No endo pain but feel I have a few adhesions (I scar really badly anyway) which can pull a bit. Also found significant improvements in my IBS and Fibromyalgia.
I started on the lowest dose combined patch after discharge and was fine, just been upped slightly more due to sleeping issues than anything else and feeling pretty good.
I was signed off work for 12 weeks (I had abdominal surgery) and then did a phased return over the next month.
I started walking a couple of weeks after surgery and built this up, my exercise actually went downhill once I returned to work and no longer had time, have found some exercises harder to do but again down to adhesions I think.
Best thing I ever did. Six weeks off work, no material complications. Got back to exercising slowly - this has been harder than I hoped. Now running 7-8km and hoping to be 10km by June.
I had mine at 31, I had an open surgery. Removal of ovaries, uterus, tubes and a bowel resection.
How did it impact your sex life? Took a while to get back to wanting to have sex, also I split up with my husband 2 years after but no issues now with my new partner.
Did you find relief from the pain? Yes, I get very little pain 4 years on now.
How did you get on with HRT? I am on tibolone. Get a lot of mind fog, I'm more forgetful than I used to be. My sleeping was terrible to start with for around a year. Constantly waking up in the night etc. Not that many hot flushes tho.
How long did you take off work? I was off work for 7 weeks then a long phased return I think for 6 weeks. Working from home during the phased return occasionally in the office.
How long until able to exercise again? I had to wait 12 weeks to exercise slowly again. Due to mines being an open surgery I had a 9 inch scar from about 2 inches above my belly button down to pubic bone. I couldn't do a lot for weeks, frustratingly had to have help getting in and out of bed, showering and other normal tasks for around 3 weeks as I got tired very easily and couldn't strain my stomach. After the 6 week mark was more able to do things took short walks etc. I go to the gym regularly so went back to classes like body balance and yoga at first with some walking to ease back into it. I did however do a bungy jump 6 mths after surgery for endometriosis UK x hope all that helps.x
3 years post op and glad I did it. No HRT and no real issues there. A great source of upto date real info is Nancy’s Nook on Facebook. Make sure you have a doctor who does excision and has been properly trained to remove endo. It can return if not done right.
Good luck with your decision. I’m fitter and happier than I’ve been in 10 years!
I had a hyst 2 yrs ago at 41..they insisted on leaving my ovaries..so 2 yrs on still have pain on right side and awaiting an op to remove ovaries hoping that will solve the pain. Have heard it may not but what else can we do but try. Worn out with it all. Next appt cancelled so postponed until Aug. Worried about ovary removal as surgical menopause scares me. Especially if not having hrt due to endo.. stuck in a bad situation. Hope u get the right treatment for u.
It’s so lovely to hear positive when there’s so much negative out there. I’ve been waiting for hysterectomy, ovaries and bowel resection since last July. I’ve had so much anxiety due to waiting so long but also seeing negative comments. I know it’s not a cure but I was so much better when I was on zoladex that I’m hoping it will be like that. I’m 41 and have been lucky and had a girl. I feel like my life is on hold and after years of not wanting the surgery I’m ready now.
Best wishes with your final decision & I hope it works for you x
Hi, if you are making having a hysterectomy your last surgery, I would recommend they take out your ovaries.
I had a total hysterectomy around 8 months ago, my surgeon left my ovaries in, they prefer to leave them if they can keep them healthy and remove any endo found, which he did, tho my right ovary was only ablated of the endo. I was 45 (no kids due to endo).
Unfortunately I was one of the unlucky ones and the endo has come back, so to me my surgery was not successful, having kept my ovaries. So if you definitely don’t want kids and happy to go into surgical menopause, then it’s the right decision and have everything removed together. I’m now referred back to the surgeon and have an appointment in a few weeks. I didn’t want surgery again, but I think I need my ovaries removed.
As for my sex life, endo didn’t and doesn’t help, made it painful, think it was about 6 weeks before we tried sex again after surgery, it was fine, no change, not dry or painful, but I think that’s because I have my ovaries. So might be different on HRT. I’m hoping that it gets better! Everyone is different I guess.
Pain relief, after surgery (at home) for first 7 days had injections, this was for DVT, plus diclofenac for pain relief, after that I just took paracetamol.
Exercise, I felt pretty good after just a week, started small walks building up to going back to the gym and classes after 3-4 weeks, listening to my body, was very careful with abdominal exercises.
Like you, I want to hear everyone’s stories, I’m still finding it hard to decide what to do! Wishing you all the best and hope it goes well x
I had a hysterectomy at 28 years old. My ovaries were left because of my age. It is 35 years since I had my hysterectomy. I have had rectal bleeding for nearly 40 years. Hence, I have still suffered a lot due to my ovaries being left. I was not put on HRT until several years after my hysterectomy, but I am not on it now.
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