Hysterectomy....39.....no children :-(

Had lap on Thursday with an overnight stay in hospital. Consultant said they did as much as they could but there was so much scaring and adhesions that further surgery is required...suggested a hysterectomy. I have an appointment to see him on Tuesday to discuss further.

Thought I was ok about it but not so sure now...am 39 and don't have children....feeling emotional and confused....anyone else in a similar situation.

Family dont understand...they still think my husband and i will still have children and this lap will have made it all better.....in a very dark and lonely place at the moment

:-(

20 Replies

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  • Hi, I'm sorry that you are in a difficult place, emotionally, physically and mentally. I was in the same position as you having had a lap in November 2011 which confirmed my years of pain and symptoms was due to severe endometriosis. Surgery was offered as my only option for improvement - at that time I was 38 and my husband and I had no children.

    For us we had decided that we didn't feel children were for us - my husband has also had some health problems - but it was still a difficult decision to opt for a hysterectomy and removal of my ovaries. My family have been understanding although I know my mother has felt the heartache of not having any more grandchildren - she only has one grandchild as ironically both my sister and my brother have both had infertility problems.

    I underwent my surgery in April 2011, two weeks before I turned 39. Its not been easy and there have been some really low times emotionally and mentally since the surgery.

    I would say to you that can take as much time as you need before making a decision. You can also seek a second medical opinion as another consultant may offer you alternative treatment options.

    I hope that everything works out for you.

  • hi i am not in your position regarding hysterectaumy but i worried that my doctor might suggest it as it has now been confirmed at 27 that we cant have children .

    its a hard decision to make and i know i am not ready for it.

    take your time before you make the decision and ask as may questions as you need to .

    after a long discustion we have started the adoption prosses so we will be a family .ou family has been very supportive about are desions

    but trying to expalin endo is hard as people dont understand.

    it might be worth seeing if you could get some counciling i had it after failed ivf it helped me see more clearly and make the right desion for us

    thinking of you x

  • Hi Ladies

    Sorry to hear that you are having to face this awful decision. Just wondering (sorry if this is a silly question) would surogacy be an option for you? I was worried a short while ago that I might be in your position and some members of my family said they would do it for me but I never spoke to any doctors about it so I don't know much about it. Maybe that is a possibility for you? xxx

  • Hi SL72, and I am sorry you are suffering in every way :(

    I appreciate that everybody is different and in some particuiar cases it is necessary - but unless you are very, very lucky, hysterectomy does not cure endometriosis, and in the long term it has the potential to make the situation worse.

    In 1992, I was diagnosed with stage 4 endo and told I would never get pregnant. It took five years, and changing partner! but within a month of being with him, I fell pregnant, when it was supposed to have been completely impossible. And it wasn't a one off, in fact it turned out that I was extremely fertile.

    If you have any doubt at all, don't do it. And ask your surgeon why he is suggesting hysterectomy, and if he can tell you 100% that it will solve all of your problems. I don't think he'll be able to....

    What other treatment have you had over the years? Or have they jumped straight to hysterectomy on the basis of one lap?

    Sending hugs xxx

  • I am so sorry to hear this. It's a really awful place to be in.

    I'm 48 and don't have children. It's pretty clear that at my age it's not going to happen. It's been really hard, but I'm now starting to feel better about it and accept that I can have a happy life like this.

    I was also told a hysterectomy was the right way forward, and I was completely thrown by this. I told the doctor that I wasn't ready emotionally, and that I'd come back to it later. He was very sympathetic, and said it was an important decision and it should be my decision. I still haven't done it, though I may consider it in the future, now that I'm starting to be a bit more relaxed about life without children.

    The other posters are right - it sounds as though you may need more medical information. I hope the discussion goes well on Tuesday.

    Thinking of you xx

  • I think there are a lot of us out here in the position of no children and i agree with all the coments already made. It is a difficult decision to make. I had my hysterectomy at 44 in 2010 and it was an emotional rollercoaster. I felt so incomplete as a woman but had suffered for over 20 years and getting worse. You can only do what is right for you and you will know when you are ready.

    Big hugs for your journey xx

  • Thank you all so much for your supportive comments.

    This is my 3rd lap...including the first explorotary lap where nothing was done. Numerous treatments including zoladex, prostap, mirena coil, other hormone treatments, pain management and reflexology.

    My consultant mentioned hysterectomy to me last year and I really wasn't ready...he was very understanding and said to take my time and think over my options. After this lap he said there was too much scaring and adhesions and hyeterectomy would be the next option.

    My husband and I have known for just over 4 years that we can't have children, he also has health issues which effect this decision. It has taken a lot of time to come to terms with this and we have started to accept that we will not have children. We started to look at what we had and to appreciate this rather than dwelling on what was missing. Adoption and surogacy are not really an option for us....but who knows....with time this decision may change.

    I thought my endo had calmed down but it reared it's ugly head last year. Its been so debilitating that I have not been able to go to work and I worry about loosing a job that I love. I feel like an old lady and struggle with normal day to day tasks and chores.

    Some family members are not willing to understand or accept our predicament and just see fault in me, they are not willing to accept that there is a problem with my husband too...even though we have tried to explain.....I know if I have the hysterectomy then all the pressure will be on my shoulders for not being able to conceive and taking away any option. I know it probably sounds a bit crazy but I guess that's an Indian family for you.

    I just feel that when I need their support most...they say things like....don't worry you will get better and god will give you a baby....I am sick of hearing this....my faith and beliefs are really being challenged and I don't need the added guilt trip.

    I think counselling is probably a good idea....difficult decisions to be made and even more difficult conversations to be had with people who just don't understand.

    I have my appointment with the consultant tomorrow evening so will hopefully know more. Will keep you all updated.

    Thank you again for all your support, suggestions and advice...it's all very much appreciated.

    :-) x

  • awww well at least you decided what you want to do and that entirely up to you... i am 39 too and no kids and i have mild to moderate Endo and the Gynae did suggest hysterectomy to me two years ago and i told him that i am not having hysterectomy and i wait and see what will happen and i do not like having kids after 40!!! i am totally single and alone here... i am not broody to have kids and i cannot have it as i feel that i let my mum and dad down as they are my adoptive parents... they are not grandparents yet as my brother havent got any kids yet too.. even though he is over 40... yes it would have been nice to have babies but you have to think about your health too and of course your husband too... you should send some leaflet to your family... they ought to understand and give you support (sorry if i sounded harsh or anything i apologise for this)... i dont talk to mum and dad much about my Endo... but i always tell them that i am bleeding again and my mother knows the pains kills me... so (((BIG HUGS))) whatever you decide ok xx

  • Thank you tinker241

    Sorry to hear about your predicament :-( I think sometimes we put too much pressure on ourselves and put other people first....when really we should think about ourselves and the quality of our life....we deserve to be pain free and lead a relatively normal life too.

    I have desperately tried to get hold of leaflets in Punjabi as my parents and in-laws don't really understad the English leaflets....but there just doesn't seem to be anything out there...so if anyone knows where I can get hold of some then please let me know as this would be a great help.

    I appreciate it must be difficult talking to your parents....I always feel that they will just worry about me so tell them as little as possible but recently I have had to be open and honest with them because I have been off work for nearly 2 months and also the dreaded possibility of a hysterectomy.

    You look after yourself and stay strong...but don't ever compromise with your health.

    Thank you for the hug :-) x

  • mmmm... leaflets.. is there anyway you can look on the internet and reverse it to the language for your parents and in laws... so they can understand more?? or is there doctor surgery there and they cud sell leaflets?

    i will look after myself and like you said there always thinking of others and dont think about ourselves but im like that too...

    well hope you look after yourself... xx

  • I had my appointment with the Consultant yesterday....my worse fears confirmed.

    The Consultant said my pelvis was in such a bad state...my tubes were both blocked with scaring and my ovaries were plastered to my pelvic bone...amongst other stuff. He said I need a total hysterectomy with bilateral salpingo-oophorectomy: the womb, cervix, fallopian tubes (salpingectomy) and the ovaries (oophorectomy) are to be removed...followed by HRT until I'm 51.

    Even though I was expecting to be told about a hysterectomy I was not quite ready to hear how major this op is. The thought of having my stomach cut open is freaking me out.

    Just feel like I'm on an emotional roller coaster.

    Today we face the daunting task of telling our parents. How do we tell other people? I can't even say the word hysterectomy without breaking into floods of tears.

    My husband is being so supportive, attentive, caring and understanding but I still feel so alone.

    I'm scared...how will I feel after the hysterectomy....do you feel any different with bits of your inside missing?

    :-(

  • I was in the same position as you. My first consultant said I was in a total mess and said I need a hysterectomy and oophrectomy. I too felt pretty traumatised and spent several weeks in agonised turmoil.

    I would say to you take your time. Endo is nasty but it isnt a terminal thing so you can take your time to decide what path you feel is for you. I knew that route wasnt for me simply because it did cause me so much turmoil. You are like I was thinking, ok but there is nothing else for it, I can't stay in this pain so there is nothing for it.

    There is. I researched and changed consultants and saw one of the best endo consultant surgeons. I won't go into too much detail as I have posted about it in other places, but opted for total peritoneal excision surgery which is all done keyhole. What this does is strips away the top layer of skin of the whole of your abdominal cavity, for want of a better description. It removes all seen and unseen endo - heals cleanly, frees up areas that were stuck with endo. It removes the endo rather than anything else.

    The result was that I have been free of endo symptoms for 17 months now. I did not have a hysterectomy, i did keep my ovaries even though the other person said they unsalvageable. It was the best thing I could have done for myself as I feel it has put me back to where I was (as far as possible) rather than changing me.

    There are not too many surgeons who can do this surgery as it is so demanding on them and lengthy (mine was 7 and half hours). I am so glad I researched and found out this was indeed an alternative. As soon as I came across it I knew that this was a solution that suited me and my life.

    Have a look at the website of A K Trehan - it is very informative and at least will give you another possible option.

    Lots of love to you

    F

  • Hi

    Thank you so much for your reply.

    Unfortuantely they found some abnormal cells during my surgery and fear that these could potentially become cancerous in the future. So this has led me to take the decision of having the full hysterectomy. Was very shocked when they told me...but am very thankful that this has been spotted at this very early stage.

    I am trying to stay positive...and focus on the future and quality of life.

    :-) x

  • Big hug to you. I am very sorry you have had that news. Yes it is a good thing that this was spotted. Blessings come in many guises. The thought has crossed my mind in the past that I might not think I did such a good thing if I later develop something malignant that gets missed that I wouldn't have got if I had made a different choice. You will know that you are doing the right thing under the circumstances and I wish you strength and love and every best wish possible. xxx

  • Ah hun

    Please don't torture yourself....you made the decision you had to and that was right for you at the time.

    Thank you for your positive words.

    Take care :-) x

  • Hi SL72. Im 40, married with no children :(

    I just had my hysterectomy 8 weeks ago, cervix, tubes,uterus, both ovaries, everything gone.

    It was the best thing i have done so far, i immediately felt better after suffering many years with endo and adeno. We are heartbroken not being able to have children, but we knew we couldnt for a number of years. The op has given me my quality of life back. Just be strong, you will get through the difficult times but we have come out stonger.

    Love Sarah. xx

  • Hi Sarah

    Sorry to hear about what you have had to go through, very difficult emotionally, mentally and physically....I feel your pain....but am pleased that you have seen a big improvement in the quality of your life since your hysterectomy.

    Your words have given me great comfort and strength...I know its the right thing to do and accept this...but some days it's such a struggle to stay positive. But I accept that some days will be better than others and it's ok to have a blub here and there.

    Trying to stay positive.....it is so nice to receive such supportive messages which remind us that we deserve a pain free life and some level of normality.

    Can I ask how they did your surgery, which procedure did they use?

    Also, what was your like following the surgery...is there any hints and tips you can give me?

    Thank you again x

  • Hi SL72. I had a total abdominal hysterectomy, thats ovaries, tubes, cervix and uterus removed, the incision was abot 7 inches across the bottom of my stomach the bikini line area. I was in hospital for 2 nights, but i could have stopped for 3 if i wanted. I had dissolvable stitches. I had a catheter in overnight for the first night. It doesnt hurt at all when removed. The first day i was on a morphine drip which took care of a lot of pain.

    I wont lie the first few days are painful, and you will not be able to do anything for the first couple of weeks. But it does get easier, no lifting, hoovering etc for at least 8 weeks.

    When you have the surgery get your house organised before, clean from top to bottom, stock freezer/food cupboards, prepare meals and freeze them. Try and have someone there for you for the first week or so.

    I found wet wipes were a god send, you can take a shower, but you will get tired very easily.

    Just ask away. I dont mind it helps having someone who has been there. Send me a friend request if you want if your on Facebook. My name is Sarah Edwards.xxx

  • Thanks Sarah

    Your response has been really helpful.

    Just getting over a couple of days where I have been very weepy. Saw GP today and he has referred me for counselling...hopefully that will help.

    Thanks again :-) x

  • Hi SL72

    Im 32 and Have just had my 5th and final Major surgery (hopefully), being a bilateral Salpingo Oopherectomy ( tubes and Ovaries). I feel so sad for you as this is not a light decision and your probably scared out of your wits .

    The reason im replying to this is because i was strongly advised that Estrogen feeds Endo and any Endo left lying around dormant after Hysterectomy could kick start again when HRT is used so think you should get more advise on that

    Hope this helps xxx

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