Hi I have had a thickening of the lining of uterus for the last 12 years caused by adenomyosis and I have enlarged fibroids the size of tennis balls and heavy bleeding and pain during periods. I have had so many scans during this time I have lost count that thankfully have all come back clear.

In the last 4 weeks I have again been sent to gynae oncology as my CA125 if 488 when it should be 35! This sounds bad but my CA125 has been raised for many years and no cancer detected. I have had MRI, CT, TransVaginal and PET scans which all show no cancer, yet still my gynaecologist is pushing me towards abdominal Hysterectomy with removal of ovaries even though she has told me my ovaries are normal. I feel pressurised and uncomfortable. I am scared as it will put me in to a sudden menopause when I am currently peri menopausal and coping. I thought I wanted Hysterectomy to get rid of pain and bleeding but feel I will just be causing myself loads more of nasty symptoms to cope with and not improving my quality of life. I am 50 and about 2/3 yrs from natural menopause. Thinking that I would prefer to menopause naturally.

I feel so anxious and upset that I am not eating or sleeping. I felt so pressured when in with my consultant that I signed the consent form for full Hysterectomy when I am really not happy or sure about it. I then rang her office in tears like a mad woman. I am not coping and need help/advice. I was told I can retract my consent and refuse surgery if I want to but don't know what to do.

Like you I thought I would live with my various gynae symptoms, including thickened womb lining, heavy bleeding, fibroids, after tests gave reassurance not cancer (my pipelle biopsy was normal and CA125 low) until I hit menopause. I'm currently waiting on an FSH test to decide if I've actually hit menopause or not. If I have then my recent ultrasound scan is very abnormal. If I haven't, it'll be a very late menopause. I'll be 60 in a couple of years. I was older than you when I had my first gynae investigations and thought I'll just tough it out until menopause to avoid surgery under general... Six years later and still can't say I've hit menopause.

I can't advise you on what to do. All I can say is when I decided to tough things out I never thought I'd have so many more years with symptoms. Good luck making your difficult decision as to how to proceed. Assuming you've written down all the pros and cons of each option and still can't decide, you'll have to go with your gut instinct. If I were you and felt pushed into something I really couldn't go ahead with right now, rather than cancel I'd ask if I could postpone even if just for a few weeks to give me more time to psychologically prepare myself. I think you have four options not two, viz cancel, postpone, go ahead as consultant wants or negotiate to keep your ovaries so not such a big operation as suggested. 

Have you called the nurse helpline on this site to help talk through your options with an independent nurse? They would be better placed to advise on options than me. I can see why keeping ovaries might be deemed risky and nurses would be best placed to advise further/help you frame any discussion with your Consultant. Good luck! X

Hi there

thankyou so much for your reply, it's really helpful to hear from someone who is in a similar situation. I didn't realise you can speak to a nurse on here as it's the first time I have ever posted a message.

I am frightened of leaving the ovaries as my CA125 is high although the doctor says could well be caused by the adenomyosis and fibroids. My ovaries are normal on all scans done.

i am scared that if they take them I am going to go into a sudden horrific menopause which has long term health implications with the sudden drop in hormone production (loss of sex drive, hair loss, sweats etc) mind you I guess I may not get all of the symptoms I have read about particularly when I am so close to menopause at 50yrs.

i have now requested another appointment with the surgeon for me and my husband to go to before surgery takes place (difficult with current COVID restrictions) We have only been married 4 years and we are both worried about consequences of sudden menopause. 

I will def contact the nurse on here and see if they can help with some of my fears.

thank you so much I really do appreciate the help and advice x

Hi again - hope you manage to get another appointment with Consultant as requested. Nurse helpline is Monday to Friday 9 to 5 – number at bottom of page. I've called them myself and nurses are really helpful in terms of framing issues, talking things through, etc. I totally get why you are frightened of leaving the ovaries because you can't know what is causing the raised CA125. The medical staff will be thinking if you're going through surgery then they want to make sure you're as cancer-safe as can be, so best to take the ovaries.

Hope both your appointment and chat with nurse go well. I'm hoping I can get my FSH result early next week, but might have to wait for GP to return from leave. So a nerve-wracking week ahead. Not an easy time for you. Hope you can find some time to relax over the weekend. x

Hi 

good luck with your FSH and I so hope for you that there is nothing seriously wrong, it's such a worry isn't it.

you also please try to stay calm and relax which I know is rich coming from someone who is a total mess.

have a great weekend

Thank you x

Hi, so helpful to read all posts. I had complex cyst removed last year. It all came back benign but the waiting and all the tests was difficult. Now again having issues, early heavy period and spotting and private ultrasound showed likely polyp 17mm. I will hopefully see my gynaecologist next week but feeling so lonely and exhausted. I lost my parents last year, I am also distant carer of my brother with schizophrenia, have two kids 6 and 10, full time job, doing building work and just find all really difficult. I am 47, still more or less regular periods but so worried and tired. ... and I should be excited about holidays we booked in next two weeks... 

Hi Rubenmum 

I've just seen your post and was wondering how you got on? I'm 3yrs on Tamoxifen and womb lining 18mm so going for hysteropsy. I had one last year all clear so hoping for same again, fingers crossed  

Hi Sundial

I hope you are well. 
I was wondering how long you had a bleed for? 
I have been on HRT since I was 48 (I'm 52 now) and moved onto Everol Conti patches in August last year and had a bleed that started on Boxing Day and still have it. Going for a scan to look at the lining of my womb. I had 3 polyps removed from my cervix in July. 
 

Hello, just joined this forum and read all the posts about thickening of the uterus. I'm 51, with a lifetime of chronic endometriosis, ectopic pregnancy and fibroids, chocolate cysts and a small abnormal bleed after no periods for 14 months. I'm not on any form of HRT as I worry about being Estrogen dominant which aggregates endo lesions. Yesterday my vaginal ultrasound said ovaries look normal but abnormal thickening of the uterus and now waiting for hysteroscopy or biopsy or further tests I guess. I never had children, am a little overweight and in a dreadful toxic relationship with someone who just shouts at me and bullies me all the time. I'm now worrying about endometrial cancer or uterine cancer. Has anyone else been in my position. I have dreadful lower back ache, am shattered all the time and my hip keeps giving way. Worried that my endometriosis has triggered cancerous cells and spread in some way. Please help? Any advice welcome.