Bicornuate uterus.

Thanks Lynda, ive an appointment next month to discuss it further. I'm just a little anxious that I'm not getting a say in what happens to my body. Also last time when i went under the aesthetic my heart rate dropped very low & I needed a lot of medication to bring me back to normal. Trying to stay positive though xx

I understand.  It's good to be able to discuss it.  However, in the end, like it or not, sometimes we need to surrender to those whose job is to heal us and trust them.  I'm not always comfortable doing that, though!  

Sorry to hear you're having a difficult time. That's what I was concerned about I will be discussing this with the Dr. I don't want to be railroaded just because it's easier for them. Thank you xx

Hi I'm sorry that you have been affected so drastically, please explain further if it is not too painful as your experience may help with decision making.

I am 50 next year so yes I'm perimenopausal damn predictive text! I have been on several medications over the years. However eventually they all became less effective and I was back to prolonged, painful & extremely heavy periods. I also suffer with hormonal migraines and to be honest both together is unbearable. I've missed work which is not being supportive either. I just feel that its no good to me anymore so take it all away. In fact during my period I'd happily remove it all myself with a spoon 😢. I feel its been going on so long and gets worse every year I've had enough. If I could have had the ablation I would have been happy with that. However the surgeon said my only other option was hysterectomy xx

Being you're close to 50 you're likely close to menopause since the average age is 51. So you've also tried the non-hormonal medication, tranexamic acid? Are you iron deficient and, if so, supplementing with iron and vitamin C?

My surgery was 10 years ago and turned everything "upside down." Although most of these problems have improved, I have never felt normal since...lost that basic joy and zest for life.

- Accelerated aging - At the time of surgery, I was 49 but people mistook me for being 30-something. By 4 months post-op, I looked over age 60 due to extreme hair loss, muscle wasting, and skin aging (loss of collagen, subcutaneous fat, elastin). My vision deteriorated. My joints started aching when I was due for another dose of estrogen.

- Insomnia - couldn't sleep more than 2 or 3 hours at a time due to my body being overheated despite being on HRT.

- Severe depression and utter despair which lasted about 1-1/2 years and I still have bouts of mild depression and despair. Never experienced depression before the hysterectomy.

- Horrible memory, concentration, and cognition which affected home life and job - Forgot about food cooking on the stove, could not handle finances (bounced checks), could not perform my job like before, could not keep up with my children's activities.  

- Anxiety and panic in situations that never caused that before

- Agoraphobia - Did not want to leave the house...became a recluse except to go to work. Used to enjoy socializing but could not handle being around people. I lost 4+ years of my children's lives. My husband had to take on a lot of the household and childcare duties. My children were older so at least not a lot of child related duties were necessary.

- Loss of connection with others including my husband and children - I didn't feel the strong bonds of love. It makes sense in light of the fact that the uterus and ovaries are what make us female. Even some women who retained their ovaries complain of this. A doctor on Dr. Oz referred to the uterus as "a woman's heart center." No amount of hormones has returned these feelings.

- I had bladder and bowel problems which have never completely resolved. The uterus is a "place holder" and "separator" for the bladder and bowel. They're displaced when the uterus is removed which impairs function.

- My figure and skeletal integrity have been destroyed. This is a given after the uterus is removed due to the need to sever the four sets of uterine / pelvic support ligaments / structural supports. This causes the midsection to gradually shorten and the hips to widen which leads to back and hip problems in the long-term.

- I have ZERO desire for sex and orgasms are a disappointment compared to pre-surgery.

I think I captured everything.

Hi, I understand where you're coming from.  We're all different, so please comsider your set of circumstances, and make the best decision for you!  Let us know how you get on!

Thanks for sharing what you have experienced in the past 10 years post-op. It shed some lights for me if not majority of members here on what to expect after hysterectomy.

I had endometrial cancer and hence had no other alternative but removing the uterus at the age of 38. I am 6 months post-op this month.

Though Doctor did not remove my ovaries, i do suffer insomnia, hair loss and realized my skin is quite dry lately. More wrinkles on face as well. Doctor asked to up intake of vitamin c to slow down aging process.

As for skeletal changes, I yet to see changes but suffer constant lower back pain and muscle pulling sensation surrounding pelvic bones. May I ask how long you have this pain after your hysterectomy?

I also get tired easily and this limit my activities. An hour or 2 drive is enough to flatten my energy level. I am not sure how long will I continue suffer... I guess for those who have other options to treat their gyne problems NOt to opt for hysterectomy!

Omg! I'm so sorry you have had such an horrific experience. It really does show that its a decision not to be taken lightly. The surgeon spoke to me as if it was as should a choosing a packet of crisps!

Hi Sue,

I'm sorry for your cancer diagnosis and the problems caused by the resulting hysterectomy. 

Your ovaries may not be functioning normally. That's pretty common after hysterectomy. And sometimes they shut down completely. Women who go through natural menopause produce hormones from their ovaries their whole lives. Studies show that testosterone production from the ovaries falls at the time of menopause but then gradually increases and is shown to be at pre-menopausal / reproductive levels in a woman's 70's. Women who've had their ovaries removed have very low levels of testosterone since they only have that produced from the adrenals. Women who've had hysterectomies but still have ovaries have lower levels of testosterone than intact women. Ironically, in the U.S. there is no FDA approved testosterone "replacement" for women. I believe the Intrinsia testosterone patch (or similar patch) is available to women in the UK. It did not get approved in the U.S.

If you've had lower back pain since surgery, it could be the result of surgical positioning. It's unlikely to be from the skeletal changes since you're only 6 months post-op. However, loss of ovarian hormones causes bone loss which can happen quickly and be a source of back pain.

My skeletal and figure changes didn't start becoming apparent until somewhere between 1 and 2 years post-op and then they got progressively worse. I tend to get back pain when I sit or stand too long.

I tire easily too. I used to be the energizer bunny! HRT has definitely helped with most of the fall-out but I'm still not my old self. Have you considered HRT?

I'm glad you mentioned testosterone.  I was on that some years ago as my blood levels of it were negligable.  It was fantastic but unfortunately they stopped prescribing Intrinsa in the UK due to NHS trying to save money. You might be able to get testosterone gel privately but it will cost you.  All this was before my hysterectomy.  Yiu need to be on estrogen (HRT) as well.  I wish I was still on it.  Vim and vigour, great sex life, good humour, not fat.

Hi aged-too-fast,

Wow! You know a lot on medical matters. Are you by any chance a doctor or working in the medical industry?

Yeah, I have been suffering lower back pain and weak muscle or muscle pulling around pelvic since after my operation. I went for acupuncture treatment but that relieved the pain for a few days only. Doctor asked to take pain killer but stubbornly me do not want to be addicted to pain killer.

HRT is an out of question treatment for most endomentrial cancer survivor in the first 3 years as it may trigger cancer relapse or increase the probability of breast cancer since we already have the abnormal cells in our body. This was partly the reason why the onco gynae I am seeing did not remove my ovaries as it will continue produce estrogen at lower amount vs hrt. By the way, do you hard to maintain a healthy weight? I have cut down sugary, processed and dairy from my diet and seems can't loose much weight. Exercise - what sort of exercise you do while recovering 1st post operation?

I have no formal medical education nor have I worked in the medical field. I have just done lots of research since my unwarranted hysterectomy 10 years ago and learned more than I ever cared to know about gynecology and the workings of the medical industry!

I have twinges of discomfort in my midsection off and on since surgery as well as occasional back pain. I don't blame you for not wanting to take pain medications. A relative was telling me about the Aleve TENS  (Transcutaneous Electrical Nerve Stimulation) unit he uses for back pain. Even though it's made by Aleve, it's drug-free. It's supposed to be  effective for muscle pain too. Of course, there's the implantable TENS unit but I personally would not want a device implanted in my spine!

There are various thoughts about HRT after endometrial cancer. I know women who've had endometrial cancer who take HRT (specifically estrogen although some also take testosterone). Estrogen (without a progestin) has been shown to not increase risk of breast cancer. However, that may not apply to women who've had endometrial cancer. I don't know if there have been studies on that.

I've been thin all my life and could eat as much and whatever I wanted. However, I lost my appetite after the hysterectomy so don't eat as much so have maintained the same weight. I do get regular exercise although not all that strenuous...mostly walking...so that helps. A lot of women complain of a sluggish metabolism / weight gain after hysterectomy.

Best of luck with getting pain relief as well as keeping the weight off!