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Emotional aftermath of hysterectomy

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WillowL
Emotional aftermath of hysterectomy

Hi

I’ve never posted on anything like this but felt it’s time I reached out. I had stage one cancer three years ago both on the lining of cervix and in the glands, I was diagnosed when my little girl was 9 months. I had a cone biopsy which thankfully removed the cancer but I had issues following that, I had a lot of scar tissue from the procedure and I have spent three years back and forth the hospital every few months trying to do Various smears and procedures to make sure the cancer has not returned, all of which did not work. This year I started bleeding really heavily for over a month and sadly made the very hard decision to have a hysterectomy having been told the likelihood of me getting pregnant again was very low and due to all the procedures I had I would be classed as very high risk. I say make the decision but it was a decision I did not want to make. But felt I could not continue my life as it was. Cancer had completely changed me and I was fearful of my body and that the cancer had returned having not been able to be checked for over three years. My op was in September and physically I was very lucky and recovered well from the op, they managed to retain my ovaries also. Emotionally I am struggling. I am just throwing myself into daily routine as I don’t know what else to do and feel if I stop I will crumble and I can’t crumble I have a four year old, but I am heartbroken at not being able to have more children and it has deeply affected me and my marriage. I feel a bit lost. I just wanted to see how anyone else is feeling in a similar position as often I minimise what has happened and put how I feel down to me being weak and soft. Also I don’t want to put on my family too much as I know they can’t understand and also I know that they long for me to be ok so I just want to be ok for them.

emmz13

Hey lovely, 

I didn’t want to read and run, I’m so sorry that you’re struggling, I think sometimes human nature is to want even more something it can’t have. I’m 40 with 2 children and even before my diagnosis I didn’t want any more children but now I can’t have any there’s a part of me that feels robbed. 

You are not weak you got through a horrendous journey and that makes you strong, it’s perfectly ok to feel the way you do but maybe some counselling to come to terms with everything you’ve been through will help you clarify everything properly. There are women on here that are in similar situations and I hope one replies to you. 

I don’t know whether yourself and your husband have thought about surrogacy? 

I really hope that you get some support, try not to be too hard on yourself, you have been through hell and deserve nothing but happiness.

much love xxx 

May 19 odd symptoms

03/06/19 doctors appt internal exam, said everything looked fine, did smear. 

10/06/19 urgent colposcopy due to HPV positive and severe changes. 

21/06/19 consultant sees 2cm tumour takes punch biopsies. She’s pretty sure it’s cc.

24/06/19 cancer confirmed, grade 3 preliminary staging 1b.

03/07/19 X-ray. 08/07/19 MRI and PET scan. 10/07/19 MDT meeting

15/07/19 restaged 2b parametrial invasion no lymph node involvement.

16/07/19 treatment 5 1/2 weeks chemorads

18/07/19 planning MRI 26/07/19 preassessment Chemo

05/08/19 chemorads start

11/09/19 chemorads end!!!! 

16/09/19 Brachy

19/09/19 DONE!!!! 

noodlesdoodles

Hi lovely,

Do not under estimate the emotional response to everything you have been through. It’s real, very common and only those of us who have been through it really understand it. The desire to not burden you family with these struggles and to ‘ be okay’ makes the struggle harder. There are two charities where I live set up to help people deal with the after affects of a diagnosis and treatment. 

They exist because what you are feeling is very common. Maybe you could get in touch with Macmillan for some support either face to face or Jo’s or Macmillan through the helpline? I have found it hard to process it all too and have found this has helped me.I felt incredibly guilty for feeling like this knowing others had a different outcome too. Just know that it is not you, just a common response to a crazy time. 

Good  luck and feel free to message me if you want to. Big hugs xxxx

May 19 smear June 19 CC diagnosed CT/ MRI July 19 EUA - into parametrium PET scan Results - 2B clinically/. 1b1 radiologically. Decide between chemorads or hysterectomy 30.07.19 Saw consultant- will do EUA / camera and node dissection first. If spread do chemorads 21.08.19 open Radical Hysterectomy and node dissection 2.9.19 NED Nov19 ISC bladder issues Diagnosed with Lymphoedema
Lotty9000

Hi Willow

Your story is similar to mine however I was 39 with 2 children and although I always said I'd have another (my partner always said no), I decided to go for a hysterectomy as I already had some irregular bleeding and I knew I couldn't live with cancer at the forefront of everything. It turned out that they examined my cervix during my op and said they would not have been able to see what they needed if I'd opted for colposcopy follow up ( I had glandular cancer).

After my op I felt a sense of grief at the loss of my fertility, angry that I'd had to make this decision. It was an emotion I wasn't expecting if I'm honest. I have to say I still feel a pang every now and then when I see a baby (I'm a midwife so this makes it a little tricky). 
I reconcile myself with the fact I am well, I have survived, I was lucky it was caught early, I have my 2 children and I'm so delighted I am here for them.

I think it's totally natural to grieve for what's happened to you and your family, for the loss of what might have been. But you are amazing, you are tough and you stick the finger up at cancer!

Love to you, also chat to your hubby/partner. Discuss how you feel, he may feel similar.
xxxxx

11th March 2019- 1st ever abnormal smear. (Never missed a smear)

1st May 2019 - Colposcopy with LLETZ

9th May 2019 - diagnosis ?1B Villoglandular adenocarcinoma and high grade CGIN;

22nd and 23rd May 2019 - MRI/CT

29th May - MDT meeting. MRI/CT clear. Amount of tumour 1A stage.

13th June 2nd LLETZ with top hat procedure 

3rd July Confirmed staging 1A1, clear margins on 2nd LLETZ. Scheduled for laparoscopic hysterectomy, keeping ovaries.

29/8/19 Total Laproscopic hysterectomy with ovarian conservation.

26/9/19 pathology confirms NED:-)

10/3/20 1st follow up including vault smear. Biopsy of presumed granulation tissue.....awaiting results again!

WillowL

Thank you so much for your replies. I can't tell you how it makes me feel, so appreciative that you took the time to reply and also that what I am feeling is 'normal'. Your words are really kind. I am having counselling and have been since I was diagnosed, as being diagnosed with cancer and having a young baby took its toll especially as I had anxiety before all this. The counselling does help but I may take your advice and contact Macmillan to see if they can help at all. I have tried talking to friends and family but feel I can't get upset as the few times I have they really do and then I feel even more guilt for making them worry. Also I feel they long me to be ok so much that they are almost frustrated when I'm not. I think they thought the hysterectomy would be the end to it all as it has been a really tough few years but I think it's only now I'm processing everything that has happening and coming to terms with it all. And all of a sudden I'm thinking 'how has all this happened?' My husband is really supportive but I think he does not really address his emotions and does not like to talk about it and I think he just wants the whole thing to come to an end and us to move on and I do to but just feel a bit lost and have to find me again.thanks again for your kind words and support it helps to know you all out there. 

bythecanal
bythecanal's picture

I really feel for you. It's so hard. 

Like others I had older children,  and no plans to have another,  but having my own choice and autonomy taken away from me has been devastating. I feel an ache when I see babies, and people who don't know I've had a hysterectomy sometimes say things like 'ooh, you'd love another,  you totally should' etc. It's a year since I had my last period, which I thought would be a silver lining,  but in reality I feel all at sea. Its like my cycle was an anchor,  and my month was predictable,  and I knew where I was, and now I don't. I try not to be self-pitying,  but my life has definitely changed. And my sex life too. I can't even really talk about that at the moment. 

My gynaecologist told me at diagnosis that I would feel physically better at six months,  and emotionally better at a year. I scoffed at the time,  not realising the emotional impact,  but now the year is approaching and I don't know if I feel better,  I just know I feel like a different person. 

Its going to take some time to get used to your new life- don't underestimate the emotional impact. Be kind to yourself,  and talk to your husband too, he might well be feeling lost too.

x

Sep 2018- colposcopy, lletz

Oct 2018-diagnosed Stage 1a1, further lletz advised

Nov 2018- repeated lletz, further tumour found, advised to have hysterectomy

Jan 2019-  laparoscopic hysterectomy, all clear from histology (though further tumours found)

October 2019- vault smear showed borderline changes, repeat vault scheduled for May 2020

bythecanal
bythecanal's picture

Meant to add, I've had some counselling,  which helped, but the most useful thing for me has been my local Maggie's centre. They really understand what I've been through,  and I don't have to explain my diagnosis or treatment the way I had to with the other counsellor.  This helped. So Macmillan or similar might be best. 

Sep 2018- colposcopy, lletz

Oct 2018-diagnosed Stage 1a1, further lletz advised

Nov 2018- repeated lletz, further tumour found, advised to have hysterectomy

Jan 2019-  laparoscopic hysterectomy, all clear from histology (though further tumours found)

October 2019- vault smear showed borderline changes, repeat vault scheduled for May 2020

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