Ovary failing after sub total hysterectomy - help please(sorry it's a long post)

[Curlymum]

Hi guys, well I'm thoroughly fed up and very, very upset...

I had my hyst (only one ovary and cervix left behind) 6 weeks ago and was feeling great until about a week and a half ago. Started feeling utterly exhausted, very hot all the time, night sweats, and worst of all, very bad headaches again (thought I had seen the last of them with the hyst).

I went for my 6 week check with my GP... She did blood tests and I got a call yesterday to say my one remaining ovary has failed.

WHAT!?!?!?

I had no idea this could happen before my op. I had to have my left ovary removed due to it being so damaged. I also had both my tubes removed. At no point did anyone tell me that by having one ovary removed that it may affect the blood supply to the remaining one, or cause it to fail.

My GP said I had to start HRT... So now I have a lovely HRT patch stuck to my bum cheek- nice!!

I'm very upset by all this as I didn't think I'd have to go through all this. I'm only 44 and the thought of these blummin patches for the next 6-7 years really is pants.

Has anyone else been through the same thing? Has anyone any advice on how I get my head round all this.

I had kind of gotten my head round the hysterectomy and being 1/2 a woman..... But this, this means I'm now not a woman at all....

I'm obviously very concerned about my long term heart health and my bone density... I've read so many horror stories of women falling apart after total hysterectomies.

That wasn't supposed to be on the cards for me - I was supposed to go into natural menopause later in my life not now.

Sorry to rant bug I'm scared and I guess in shock by this latest turn of events.

[Hidden]

I haven't been through this myself but I think how we talk to ourselves about ourselves is very important. Describing yourself as half a woman and not a woman at all is bound to be upsetting. I appreciate it must be extremely hard to come to terms with this but please try not to tell yourself these negative things. You are no less of a woman than you ever were. X

[JeanOsborne]

Hi Hun, is there a chance the ovary is just in shock?

I had a TAH, BSO and excision in March, I'm 42. Was initially put on tibalone which doesn't contain any hormones but this really didn't help me at all, so changed to Elleste solo. Menopause isn't fun but you do learn to cope and come to terms with it. If you ever need to talk Hun I'm here ok.

[AmyLee]

I'm 10 mths post total hysterectomy with one remaining ovary - at 6 weeks post op I started to get hot flushes, headaches. I had a high fsh reading of 83 and a high oestradiol reading - both of which indicate perimenopause. I knew pre op of the chance of my ovary not recovering and of likelihood menopause would come 5 years earlier after op so knew it was likely. Still swore like a trooper in docs - really upset like you. Still it was always going to come, just think it's tough when it comes with such force post hysto.

I'm still v undecided about taking HRT - can't find conclusive info that the oestrogen won't fuel the endo. Currently considering a non oestrogen version.

On the plus I believe it's good to have a remaining ovary for long term health, they still excrete low levels of hormones even when menopausal

[thedogsmother]

I've also one remaining ovary after hyst, and have to say it takes the body six months or more to find a new normal. I agree with the other post in that it seems a bit early to assume the ovary is failing. I went through a period of hot flushes and night sweats in the months after and then finally things started to settle. If it helps my one remaining ovary is most definitely functioning, I know this because the endo pain is back, so at 42 I'm the opposite to you and wishing the menopause would arrive!!

I also agree with the other poster, you are most definitely not half a woman, you are much more than that and being a woman is so much more than possessing an organ! Please talk to your GP if that is the way you feel, you've had a major operation and there is no shame in seeking help to come to terms with that.

Take care of yourself, TDM

[Curlymum in reply to thedogsmother]

The GP who tested me said of the two hormone levels she looked at - one was 2 X higher than the top of the range and the other was 3X higher than the top end of the range. Does that sound like ovary has gone into shock or its failing/failed?

I really am confused and not sure what to do next. I'm just so tired, physically, mentally and also tired of fighting for every piece of info, every test, every procedure....

I just want someone professionally qualified to tell me everything I need to know about my health and my options.... Whilst not being made to feel that I'm faking, a hyperchondriac, etc.

Thanks for the reply - I really appreciate the time you've taken to read my post and reply xx

[Suze1974]

Hi there, I had a fully hysterectomy 13 days ago and I totally understand what you mean about understanding who you are post op. I went through 'will I still be female' stage before the op and decided the pluses of having the op outweighed this thought. Must say after the op I'm still not sure how I feel about being a woman now but I'm needing to give myself time to adjust.

As for the ovary, I was told leaving one overy in would not necessarily deter menopause. One of my ovaries were fine but the other was severely damaged due to endo. We decided to remove both ovaries and use HRT.

Good news, there's another form of HRT which is different to patches it's called Eatrogel and it's a gel you put on your thighs or the backs of your arms. Because it's a gel the dosage can be modified to suit your needs.

Hope this helps xxx

Susan

[Curlymum in reply to Suze1974]

Thanks Susan,

It's good to hear that people understand how I feel. My other half doesn't understand why I am so upset by this recent turn of events. He is supportive - but says I'll be fine on HRT.

He says we will face it together, which is fab... But only someone who is in the same position truly understands how mixed up I'm feeling.

I know I'm all over the place. The hot flushes and sleepless nights are "doing my head in" I'm really shocked at how hard this has hit me. I mean, I was prepared for the hyst - I have fought it off for years and years, but the pain with the adenomyosis as well was just too much. Everyday was pain, pain and more pain!

Thanks for the advice about the gel - I may ask the GP about it - as these patches keep coming unstuck ?!

How are you finding things?

Is the HRT helping?

I know it took me til about 3 weeks before I could move about easily and not want to sleep all the time.

Good luck with your recovery xxx

[JeanOsborne in reply to Curlymum]

Hi Hun you can also have tablets. I take Elleste which is one of the weakest ones. Works. Really well.

[Suze1974]

Hi. Nice to hear from you. I feel like I have period pain mainly and pain that comes with wind is very intense but apart from that I'm fine. I'm meant to be off work for another 4 weeks but I can't see that happeneing. I head up HR for 2 continents for my company so I need to get back into work, although I'll be able to work the hours that suits me - the company will just be happy I'm working anything.

Husbands don't understand how we feel, how could they. How do they know we will be 'fine on HRT'. It's not really fair to expect them to either. My husband is in your husbands camp but it only goes to irritate me. Of course we will change but it's for us to decide how that change impacts us.

The gel is good. I have a hot flush now and again but they aren't long lasting and not every day. I do find that my moods are changeable though. But I have decided to be kind to myself with that and if I upset anyone apologise and explain to them that I am going through a long period of adjustment and for them to cut me some slack.

Be kind to yourself and let me know if you want to chat.

Susan x

[Curlymum in reply to Suze1974]

Hi again Susan,

Yeah - I remember those pains - it's the wind and bowel movements that hurt like hell. Still get the odd pulling sensation.

Do you know how long it takes to get "on track" with your HRT.

I'm not sure if it's weeks or months?? I don't want to turn into a right moody so and so. It's bad enough having two teenage girls in the house whose hormones are all over the place, without me joining in!! 😂😂

I just hope I can get myself feeling some kind of normal before too long. I'm tired of feeling poo all the time... These flushes and the constant headache (that feels like I've been hit around the back of the head with a shovel) I can do without!!

Thanks again for your response and your time. It's good to hear friendly 'voices' coming back at me from this site.

Hope you are still feeling ok and that each day is getting easier. You must have your time off because if you don't - you have a higher chance of getting adhesions from doing too much too soon. Remember you have had a BIG operation. If a man had anything like the seriousness of the op - they wouldn't be rushing back into work before they were fully healed.

[Suze1974 in reply to Curlymum]

Hiya. I had the operation on Monday 27th and started HRT on Tuesday 28th. No idea how long it takes for the HRT to kick in and regulate everything but apart from a couple of hot flushes I haven't noticed myself being that different from before the op. I can get more emotional some times but I put that down to the surgery rather than anything else. I think the Estrogel kicked in right away?

As for the time off, I know you're right. I just feel so lonely being at home and I miss my work (well, I miss the people at work).

Going back to work for an hour or two a day or as and when I want to go in I hope will allow me to recover while keeping in touch.

Hoping you get the hormone issue sorted soon. I really recommend the gel.

Susan x

[Bumblebee1975]

I'm sorry to hear you weren't told about the significant risk of menopause after a subtotal hysterectomy. The risks should always be discussed. I really hope the hrt helps you feel better soon and if you get it right it should reduce your future risk of bone and heart problems to as low as possible. The higher risk group is those under 40 and not on hrt so take hope! X