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Full Hysterectomy in 30's - Advice/experiences please

Posted , 8 users are following.

charlotte1824
charlotte1824

Hi,

I have been informed that due to endometriosis and recurrent endo cysts that I will most likely need a full hysterectomy.

I have read a lot of horror stories of early menopause, natural or otherwise and have read the side effects of bone thinning, heart disease etc etc so I am kind of terrified.

I am done having children so thats not a concern but the side effects and potential complications of other diseases is. I would be happy to wait for the natural menopause or for a closer age to it but the Dr has told me that this could cause complications down the line due to the endo becoming a lot worse and making it far more complicated to excise. He is an Endo specialist and one of the best in the country i believe so I trust his knowledge. He has said I would be on HRT afterwards.

So if anyone has had a full hysterectomy and is on HRT how has it affected you.

Do you have any health complications from it.

Does HRT manage the symptoms effectively

Is your mental health ok after the op due to the hormones.

Is your hair thinning, your weight unmanageable, skin problems etc etc

Do you have a sex drive. Is sex comfortable

Are you seriously fatigued/joint pain etc

Thank you in advance

0 likes, 13 replies

13 Replies

  • welshgirl67
    welshgirl67 charlotte1824

    Posted

    Hello Charlotte

    I'm sorry you fni d yourself on this path but yiu are doing right seeking advice if ladies who have gone through this.

    I had tvh last January' for prolapse not endo but all is well with me regarding healing hiwevery I did keep my ovary and I'm post menopause at age 51.

    I have a friend who had htsterectom8 at age 27 due to really bad endo but I'm sirty to say she is worse off.

    Even though endo is in uterus it can spread outside the womb which us w6gat happened to he

    She now has it on her bladder4,bowel and ureters tubes near her kidneys.

    She would,d never if hine through it if she ew how she would feel now age 51.

    Now it doesn't mean to say this will happen to you but you must ask all these questions with the consultant.

    Her consu6 was one of the best in the country try too,I believe in Cardiff but even the best skilled hands have no way of knowing if it will spread once womb is removed.

    She was on HRT for years but had to come off it as HRT feeds the endo tissue that's she has around her irgzns6.

    Ask all the guy before you go ahead. Good luckxx

  • misty10444
    misty10444 charlotte1824

    Posted

    I had mine last May, kept ovaries. I did okay for the first month. Started having problems with ovarian cyst. I had another ultrasound done and the doctor ask if my tubes were removed. They were supposed to be. Now I will need another surgery to see what it is, the doctor said It was very inflamed in the area.

    I had to have a hysterectomy because of a failed novasure ablation. Personally I would never get the ablation or hysterectomy unless it was something life threatening. I have had nothing but health problems. My L5 and S1 disc in my back bulged causing sciatica in my legs and back pain about a month after surgery. I have had bladder and bowel problems. Diagnose with IBS and never had any problems before surgery. Sex drive is mostly gone and can be uncomfortable because of shorten vagina. Definitely make sure there is no other alternative and your doctor knows what he is doing.

  • charlotte1824
    charlotte1824

    Posted

    Thanks guys for replying, sorry your all going through these issues too. Being female kind of sucks at times.

    It doesnt sound great. Ive read about someone else who had spine issues after, I wonder why that is.

    God I am so nervous, perhaps I will just have the lap and stay away from the hysterectomy, it just sounds like not taking that option might cause a big problem in the future.

    I think my bowel and bladder are already involved as I have bladder and bowel issues which worsen toward my period but honestly I have learnt to live with those already, also my pain is excruciating but only during my period. The rest of the month I can just have mild pain around ovulation or with gas/poop moving through. Again this has just become normality for me. The cysts are a problem as if they burst its not good.

    HRT with estrogen I have heard can be a risk of recurrence but I assumed that was unlikely as the surgeon said hrt would be necessary due to my age.

    • welshgirl67
      welshgirl67 charlotte1824

      Posted

      I've had no issues at all after my tvh. We will all be different so make the choice fir your body and you.

      Too much info can have the opposite effect too.

  • Glennie68
    Glennie68 charlotte1824

    Posted

    Hi Charlotte,

    I've been on HRT since I was 29 years old - I have not had endo - had an ovary and tube removed at 28 then premature ovarian failure - the other just stopped working. I had everything else taken away by full hysterectomy 20 months ago at 48 years old - I had a huge fibroid - but started back on HRT within 2 weeks of my op. I am on tablet form - Elleste solo 2mg this would probably be similar to what you would be put on - but the starting dose is 1mg - some people can be fine on that - but I found I was having hot flushes and mood swings on the lower dose. I have been on HRT for 21 years now - (long time!!) My heart is fine and my bones have not thinned. HRT works well for me .

    I would say the hysterectomy is a hard slog - you will have a good 6 months where you will tire very quickly - and you have to have help to lift things and can't do even light housework tasks - I had a bad back before my op - and after a fair bit of physio - am doing a lot better. I don't regret the hysterectomy - and I certainly am pro-HRT!

    • charlotte1824
      charlotte1824 Glennie68

      Posted

      Thanks for the response, I am pleased HRT works for you. I am glad your back is also getting better without needing surgery, sorry you had to go through ovarian failure when you werent expecting it. It nice to hear that you have had a fairly positive experience. I know I will find not lifting or doing much very hard as I always push myself to do stuff but i guess I will have to take the dr's orders seriously as I wouldnt want to end up back in surgery!!

  • christa01072
    christa01072 charlotte1824

    Posted

    Hi Charlotte I had a radical hysterectomy in August last year year due to endemetriosis aneoymosis and 2 large cysts one on each ovarie they told me me I might have ovarian cancer so I didn't think twice about the op fortunately it wasn't cancer but I have never looked back I feel like a new women I'm on hrt i feel great hot flushes but nothing compared to the flushes before I went on hrt I did I loose my sex drive at first but I'm getting it back again I went bk to work in the first week of Nov but I feel great no pain at all before I was constantly feeling miserable swollen belly and in pain and periods were horrendous so I would say go for it!!!

    • charlotte1824
      charlotte1824 christa01072

      Posted

      Hi Christa, thanks for sharing your positive experience. I had the laparoscopic cyst removal operation 2 years ago because the surgeon said she couldnt say if it was cancer or not, she said the endo wasnt actually too bad in there at the time but the surgeon i saw the other day said to have endo cysts means you normally have a severe form of the disease. He suspects that they didnt actually excise the endo properly (my pain or bleeding never got better after the first op either) I was hoping to avoid surgery full stop this time and just wait for the menopause naturally but his advice is i would end up in chronic daily pain and it would be such a mess inside that it would be harder to operate.

      I am pleased to hear that the operation has solved alot of your pain and problems and that you are getting your sex drive back. I spoke to my aunt last night who had a hysterectomy and she said she didnt even know the pain she was in on a daily basis until it was gone. I guess as women we get used to it and it becomes normal.

    • welshgirl67
      welshgirl67 charlotte1824

      Posted

      Charlotte I was told by a consultant that removing endo almost definitely does come with more scar tissue along with it.

      It usually spreads as the cells if the disease can spread through tissue.

      I do know a lady who cured hers through natural healing.

  • zoe32446
    zoe32446 charlotte1824

    Posted

    Hi Charlotte

    Try not to only take on board the negative stories there are some of us who have had a positive experience too.

    I had years of problems, i had my left ovary removed at 35 as a large cyst had dragged it over to the right side. M problems just got worse with years of adehsions, fibroids, cysts, bleeding excessively etc.....

    So 3 years ago i opted for a total abdo hysterectomy after advice from my gynae consultant.

    I was told i could keep my remaining ovary but this could cause more problems and may need future surgery which i did not want.

    So at 44 i had my surgery

    The night before the surgery i was tempted to change my mind after reading the stories of other ladies experiences but i am so glad i didnt.

    I had 4 months off work due to my job as a nurse and my worst problem was hot sweats and teary mood which have been resolved with Low dose HRT patches.

    I worried about ageing with regards to my bones and skin but i take collagen tablets, am careful with my diet and walk with the dogs for around an hour a day.

    I am the same weight i was prior to the op and still a size 12.

    My sex drive did not change.

    People comment on how good my skin is and although i have issues with my back (due to my job as a nurse rather than the op) i can honestly say my quality of life is so much better.

    I tried and still do keep positive and made the best out of the experience as i could.

    Do whats right for you.

    • welshgirl67
      welshgirl67 zoe32446

      Posted

      Yes your right zoe but we all must be honest with our info.

      I've had nothing but a positive outcome with my hysterectomy but I know a close friend who had suffered awful through having hysterectomy be ause of endo. It's sad to see but that doesn't mean the next lady will suffer.

      We just do what we feel is best eith the advice we are given.

      What else can we do?

    • zoe32446
      zoe32446 welshgirl67

      Posted

      Totally agree

      But if like me you tend to remember the negative rather than the positive, as i did to the point of me thinking about cancelling my op on the night before.

      I just wanted to put a positive slant on things ...

      Im coming back as a man to avoid this next time round however!!

    • welshgirl67
      welshgirl67 zoe32446

      Posted

      I used to do that after my first failed repair to the point I was consumed.

      I've learnt a bit lesson and now know we are all unique and no guarantees even with the top surgeons in the country.

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