I had a subtotal hysterectomy (removal of my uterus and tubes) done about 3 weeks ago because they found adenomyosis on an MRI scan that I had to insist they do and I was told that this was what was causing most of my pain symptoms that was seriously affecting my day to day life , made me infertile and made me unable to have sex with my husband.
I have continued to have pain on my left side when ovulating and near what would have been my usual bleed. I looked this up myself and found this is most likely a recurrent cyst that happens on my left ovary. The thing is this was never suggested to me as a possible cause of the pain I was experiencing most months and could have simply been controlled with with birth control pills and I just come off them when trying for a baby again and so on.
Also even though I sought advice from other ladies on how they were after their hysterectomies for adenomyosis and was reassured this was the route to take I have since found conflicting information that was shown to me by my mother in law link: lowninstitute.org/guest-pos... which was an account written by a woman who had had her uterus and ovaries removed because the doctor thought the large cyst was a cancer risk. She goes on to explain how damaging it is to women to have any of their fertility organs removed she goes on to describe the problems that develop later that include:
the uterus and its ligaments are vital for pelvic organ and skeletal integrity, the uterus separates the bladder and bowel and serves as an anchor keeping these organs where they belong. Once the uterus is removed, the bladder and bowel drop and the vagina is displaced That is why hysterectomy can lead to bladder and bowel dysfunction, prolapse, and incontinence as well as a 4-fold increased risk of pelvic organ fistula surgery
the uterine ligaments are the pelvis’ support structures so the torso collapses after those ligaments are cut to remove the uterus. The hips widen and the spine and rib cage fall. This explains why hysterectomized women have shortened and thickened midsections and no curve in their lower backs. These changes lead to back and hip problems, reduced mobility, circulation issues and chronic pain. These changes seem to be the best kept secret about hysterectomy
many women report reduced libido and sexual sensation likely due to severing of nerves and blood vessels and possibly other mechanisms. Personality changes are also a common complaint. There are additional risks of having the uterus removed. These include certain cancers – rectal, thyroid, renal cell, and brain – as well as heart disease (#1 killer of women). Heart disease risk is 3-fold according to this study. This one went further and looked at risk by age at hysterectomy. removed which includes the bladder and bowel drop and the vagina is displaced.
Can someone please reassure me by telling me of any positive stories of how they were after having a hysterectomy not just months after but years later as this story has completely terrified me where my future now looks pretty bleak. Also I am not vain but can't stand the thought of losing my figure I have lost most of my feelings of femininity as it is due to the pain I was experiencing and not being able to have sex with my husband.
Sorry for the long post but feeling so scared
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chime6
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Hi there, I'm sorry you've been through so much and I hope you're recovering well from your surgery. I'm afraid I can't offer any experience, but a hysterectomy is currently on the table for me and I really appreciate the information you've provided, thank you.
I'm so frustrated that everytime I mention to someone that I may be having a hysterectomy and ovary removal, no one seems to think it's much of a problem having my menopause at 37 and the fact that there are downsides to it. It may well be the only answer for me with adeno and endo causing me pain daily, but I'd like to have all the facts and for it not to be played down!
I have seen many positive stories on here post hysterectomy, and you'll almost certainly get a massive, if not total, reduction in your pain.
Have you been diagnosed with endo as well as adeno? If so has this also been delt with? x
The statistics show scientifically that women who have a total hysterectomy have a much much lower risk of endo coming backwithout removal of the ovaries the cahnce of endo coming back is about 60 percent after 5 years with total hysterectomy it is only 20 percent.so you are 3 times less likely to have your endo return if you have had a hysterectomy with oompherectomy.
I think a lot depends on how old you are if you are nearing the time when you would have had the menopause then I think all the hormonal reactions will be less severe because your body would have gone through them anyway. The risks for ovarian cancer and breast cancer are much lower after a hysterectomy too because it stops oestrogen production.
Leaving endo in and untreated can lead to frozen pelvis which is pretty horrific and you can end up losing a kidney or having massive damage to your internal organs.
If you have adenomysiosis the pain should be massively reduced and if you have bad Aden it is unlikely that you would be able to carry embryos to full term the risk of miscarriage is much higher.
This part " The hips widen and the spine and rib cage fall. This explains why hysterectomized women have shortened and thickened midsections and no curve in their lower backs."
Doesn't sound true to me at all. My sister had a hysterectomy at 35 and she is a slim as a whippet with no belly at all and a perfect curve in her lower back.
Once you have your ostrogen levels drop at near menopause or after hysterectomy your body will make more fat on your belly because of this cahnge in hormones. I think this characterisation of women who have had a hysterectomy all being overweight and a weird shape is obviously not true, ask around you will see loads of women who have had a hysterectomy who don't have these issues.
I haven't had a hysterectomy but wish that my doctor had offered me one at my last op. I didn't do it and now after just two years my endo is terrible again. The adenomysiosis in particular is dreadful and the endo has now spread all over my pelvis, into my diaphragm and into my bowel. I'm in very bad pain 24 hours a day and no need another operation. I should have had the full hyterectomy before, my sister had hers ten years ago and she is really really fit and well.
I think the article you have read does raise some legitimate concerns but it has been written by someone who is very against hysterectomies and is pointing out ony negatives.A lot of what we read points out only the positives, so it is good that there are other views. I think the truth is probably somewere in the middle.
Try searching for the different points I have raised here, lower risk of ovarian and breast cancer,lower risk of reoccurance of endo,and the risks of leaving it untreated. Ask the women you know or on here for their own experiwnces of hysterectomy, maybe make it a shorter post, many people won't read a long one and see what people who have experienced it have to say. I think that's the best way to get a realistic picture.
Hi, no one would choose to have a hysterectomy if they didn't need one because you're right - there are risks. But you have to believe that your drs wouldn't have done the hysterectomy if they didn't believe the risks of a hysterectomy outweighed the risks of untreated adenomyosis.
I had a look at the article you linked. It sounds like the lady had a really bad time of it: but the internet is full of anonymous opinion pieces designed to terrify people. Some of the claims she's making I recognise, but some just don't seem physically possible: your hips aren't going to get wider simply because you've had your uterus removed. Remember it's really not very big, especially considering all the other stiff that's squashed in your pelvis.
I'm having a hysterectomy in 2 weeks. I don't want one. But the risks of what will happen to my body if I let the endo and adeno continue to grow are far worse.
The ovary pain you describe sounds like what I have - over the months it grew worse until I'm now taking prescription only painkillers round the clock to cope with the pain. My GP Insisted it was 'just a cyst' but it grew into an endometrioma and I'm now i'm going to lose both ovaries. If your pain gets worse/doesn't go away demand a scan.
Finally in answer to your question, my colleague's mum had a hysterectomy about 30 years ago due to an ectopic pregnancy. And she has been absolutely fine.
Please stay away from Google and gain back the trust in doctors. If they havent suggested other treatments that would mean they were not appropriate for you. The doctor's don't enjoy taking parts of us as much as we think. I was supposed to have my tubes removed, but once they've opened me they decided they are not in such a bad way and they left them in. I know it's not the same but I'm trying to show you that if the doctors noticed something and decided there is another way to help you get your life back, they would have done so.It's ok to be angry and upset. It's not what you've planned for yourself. But try to focus on the positive and your live with your husband, he seems like a descent kind ❤️
Hi I had a hysterectomy 5 yrs ago and I don’t regret it as I couldn’t have carried on bleeding like I was due to fibroids and endo. However it cured one problem but has now left me with a bladder prolapse which is due to be repaired next year. The uterosacral ligaments were removed due to endo but I think this prolapse has been made worse by heavy lifting in my workplace as I’m a self employed shop owner which involves lifting . So just be careful not just at the healing stage but for the long term too. Take time to heal and don’t rush it. Hope all goes well x
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