Others can’t see the loss – so I care for myself with knowledge, creating and love – Kate’s Story

I’m 44 years old, in Australia and had a total abdominal hysterectomy (cervix, vaginal cuff gone but retained ovaries) on 8th Feb 2012 and now just 8 weeks post-op. I know many women find relief after a hysterectomy but I did not feel ‘sick’ and simply did not want the operation.
My husband and I have tried for 10 years to conceive including IVF but no luck – I do have a beautiful 16 year old stepson though :o)

I was a conundrum, with a history over 15 years of pap test results showing CIN or AIS but procedures – 2 LLETZ, 2 cone biopsies – with clear results or vague pathology. They just could not find the cancers that were supposed to be there. I took a lot of convincing but my GP and Gynaecological Oncologist finally got me to sign the paper for the hysterectomy.

The report – a perfectly healthy uterus and no cancerous changes but extensive cervical endometriosis – something they could not have known but I wish someone had thought of it earlier!

The Loss – It is one thing to have the ‘normal’ slide into childlessness and menopause with time to reflect and grieve. It is another to take pen to paper and literally sign away the ‘hope’ and ‘possibility of a miracle’ that I had been clinging to. And because it is internal, others cannot see or begin to imagine what has happened.

The Knowledge – If you are so inclined, there is an internet and libraries out there to find out about your body. I am grateful that my doctors gave me the space and time to research, argue, debate and question them. I would regularly go to consultations with 3 or 4 pages of questions, so do not ever be afraid to ask or get detailed explanations and take someone with you to compare notes.

At the hospital or outpatient clinic ask, ask, ask – carry a small notepad and write things down if you can to help your memory. Both my husband and I are also grateful that we found this website as it has been a source of clear, sensible and understandable information…and very warm, brave women.

The Creating – Grab an art book or notepad that is yours and yours alone then write, rant, cry, paint, scribble, draw, collage, knit, grab a needle and thread…anything to help you imagine and express your feelings. Who cares what it looks like – it’s the process that matters.

Ideas can come from the most amazing places. I found a fresh fig that was the exact weight and dimensions of my uterus -I drew it, photographed it, sculpted it and…even just holding it helped. Next plan – put a fig tree in the garden as a ‘ceremony’ to honour our loss but also celebrate life!

The Loving – Believe the posts on this website which tell you to ‘do nothing’ whenever and wherever you can. This is time for you and your healing. If someone asks you what they can do for you then tell them! Cook, clean or ‘please leave me alone today but call tomorrow’…

It is so hard to take it slowly but I trust that this is the best way to help me be the strongest and healthiest I can. I even found some simple breathing and visualising meditations which have helped tremendously.

Actually feel like I am ‘actively’ contributing to healing my body from within. Having a routine – get up, walk for the time I can then do a 10 minute meditation – also gave me a structure in the early weeks. I was also clear about returning to work – tried it for 1 day at 6 weeks post-op and no good so got another week off. Again, caring and loving yourself is the key.

Thanks for reading. I hope there are some tips there that help – even though they might sound a bit ‘out there’ (believe me, I wear a very serious suit to work!). Hugs, K

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in my own words book coverNow available on our online store and all other online book store’s. In My Own Words: Women’s Experience of Hysterectomy is full of many other real-life stories from women the world over.

Other people’s stories help women feel less isolated. They show that they aren’t going mad, missing the point or stupid.

8 comments

  1. Thanks Kate for sharing your story.

    I had hysterectomy with cervix, ovaries and tubes removed at 45. Like you, I did not want the hysterectomy (due to fibroids) and had asked the gynae to preserve the ovaries but it got removed as well (due to endometriosis). I was basically having a good life pre-op without much symptoms and now having to adjust to sudden menopause.

    I am almost 8 weeks post-op and if I could turn back the clock, I wouldn’t do this.

    Thanks again for sharing your story.

  2. My fight started at the age of 14, I was engaged at 19, after trying to get preganant for 8 years we were done! The early diagnosis of PCOD and the extensive endometriosis on almost every organ below my stomach didn’t make the decision to have a hysterectomy very hard. There were days the pain was so bad I could barely get out of bed much less stand up straight. By the time I had the hysterectomy at 29 (6 weeks ago) it was my 6th surgery in my 20’s, in 3 years actually! Before the surgery I had come to grips with the idea of it just being me and my husband even though we are foster parents. We had just stopped all the fertility treatments at the new year, so I was mourning the loss of a dream, and by April I needed the surgery. The recovery of this surgery makes me second guess my whole life. I’m in a very dark place and feel like someone has stolen my own life away from me. Your story gives me hope! Thank you for sharing it with others!

  3. Hi Rosemary – so sorry to hear you have had a rocky road the past year – wow, we only think we have to prepare ourselves for the ‘before’ rather than the ‘after’ as well.
    How tiring for you, especially when you are told you are ‘fixed’ & ‘should’ be all better…I know it’s obvious, but has your Dr talked about hormonal changes with you at all?

    …You ask if I’ve got comments…here they come 🙂
    PHYSICAL-Being kind to myself has meant I always do my routine walk and meditation as it makes such a difference to my whole day – even when I have ‘hit a wall’ such as at week 6 when I supposed to be all ‘fixed’ – ready for work & physical relationship (you have got to be kidding!) – that 10mins of meditation was brilliant. I’m not an expert at it by any means, just try my best & it really works…surprising. Anything that gives you ‘me’ time & helps to give you a sense of being active in your own healing which just has to take as long as it takes.

    SUPPORT- I think I had to find my ‘voice’ too: 1. first in a journal (which I had never done before)that I write in everyday to clear all the ‘stuff’ out of my head so I can get on with things. It is written down so that makes it real, my truth at the time & validates this truth so I can always go back to it or leave it. 2. Joined a group via the forum on this site for other ‘Feb op’ ladies (again, had never done before) & that has been brilliant – even though we are on opposite sides of the world – sometimes better than talking to mum, sisters or girlfriends, who have all had their babies & still have their ‘bits’. 3. Actually started telling people about my hyst – I realised I was almost shaming myself with not talking about it. Sure, there is a time for privacy but I have found kindness & care in the most unexpected places.

    PROFESSIONAL HELP – I also bit the bullet & called the psychologist who was attached to my ward, as I was in Oncology, for an appt. I had never met her but even just taking that step to call helped a lot.She helps me to give myself permission to be angry/grieve & acknowledge that it’s hard for others to understand & doesn’t seem real when there is no outward visible sign of loss. I may only need a couple of sessions but I’m glad I started that journey.

    REVIEW WHAT IS IN MY LIFE -Some of my angry energy has really helped with focussing on what is important in my life, to rethink what I think I’should’ be doing and ‘why’. Eg For 4 yrs have been involved with a documentary through my husband’s film company about homebirthing in Australia & there is a strong culture of “the womb as centre of being & female energy..etc…” So not having a womb made feeling like a ‘real’ woman extra hard!!! Therefore, I stepped away from that job, as did my husband, but it was the right thing to do for our sanity and joint recovery.( Haven’t seen the resulting doco but it is doing very well.) Daring to be what I would have thought was ‘selfish’ before, has really helped-so much tension & worry just evaporates…

    TRYING SOMETHING NEW- I’m looking forward to finishing artworks I have started but put on hold because of work, planting our fig tree and also planning a ritual of all things . There is a great article here on this website (follow the tag for ‘ritual’) about what 1 woman did – her’s is quite involved but I am sure there may be some ideas there that you might like to try?

    As you can see…I think I have found my voice. Even with the small steps of sending a query out via this website or in a support group…I truly believe it is the EMOTIONAL healing that has supported my physical healing.

    Rosemary, hope there is something there in the ‘rant’ above that resonates & those wretched cold/infections start to subside really soon. Sending warm thoughts & hugs your way – recovery takes as long as it needs to. xxx Kate

  4. You are all so wonderful…..Thank you ladies for sharing you stories, your support & your courage.
    I am now 9.5 wks p0st-op and at the end of every week I look back through my journal and go “Yes, I can see that it is getting easier – I AM getting better”.

    Thanks Maria for the good wishes & so glad you are cancer-free – yes, my husband & stepson are a real blessing [as are the 5 nieces/nephew :o) ].

    Thanks Rachel – great to hear you are healthy. I can imagine it would have been a massive shock to you & your husband to go through an emergency hyst in your early 30s . Society tells us it only happens “when you are old”..right?! And of course, even when you are a mother, no longer having that choice would not part of be ‘the plan’ & I think that grief must be just as real indeed. Sending hugs your way.

    Andrea so glad they found your ovarian cancer when they did. I understand the ‘silent’aspect as they found out my friend was Stage 3 only when she was having an elective caesarean for her 2nd child – it was 2 yrs ago and she is doing brilliantly after all the additional surgeries and chemo. So if I ever feel it is too much, I just think of her & ladies like her. Congrats to you for the clear scans ! :o)

    Looking towards the future has helped a lot & starting to make plans – marking out the garden spot for our fig tree…and…..have investigated being foster parents as well ! Early days yet, but think end of 2012 is looking like the right time – will keep you posted !

    Hugs to all of you for continued recovery.xxx Kate

  5. Thank you Kate for your very positive comments, It is one year tomorrow (Saturday 14th) since my total Hyst, including overies,I like you didn’t feel “sick” but had very painful periods and then for 6 years I was bleeding constantly. It was uterine bleeding, no fibroids or anything was found, a year on I can honestly say this op has been solved the problem, but I feel so depressed, tearful, and have had one infection after another either a cold or bladder, my immune system is really suffering and I don’t feel as if I have “Picked up” since my op, I do like your comments though and have taken on board your ” be kind to your self” I just feel I have lost the person I was and feel no one understands what I have gone through! sorry to be so negative have you any further comments? many thanks or listening, Rosemary Love to you and hugs for your recovery.XX

  6. I am sorry you had such a hard time with coping – I am 47 and had a total abdominal hysterectomy last May – luckily I did not have to deal with the loss mental struggle maybe because I have two daughters 26 and 22 and a Grandson 22 month 🙂 – I am to this day so thankful for my Gynocologist suggesting a total hysterectomy due to fibroids – during my surgery it was discovered that my ovaries were cancerous – after healing for about 5 weeks which again for me was really no big deal -went to NYC for the weekend after week 4 …walking was a bit tiring But nothing like what would hit me after 12 weeks of chemo 🙁 I began chemo 6 weeks after my surgery , all my hair fell out lashes and eyebrows included , terrible hotflashes due to the fact that my body went into total shock by everything womanly 🙂 gone and the chemo side effect . It took 18 weeks of chemo – but I have had two scans since October 2011 and so far so good – I am so thankful to have had my hysterectomy since I feel that is the reason I get to see my grandson grow up , had it not been for the hysterectomy my cancer would have just grown and grown – they call ovarian cancer the silent killer , because there are no tests and no systems . Again I am so sorry you had not a good experience – but it doesn’t always have to be that way – I which you fast healing mentally and physically .

  7. This is beautiful and my thoughts are with you.

    I am very blessed with a son, now aged 6, but so wanted another child as did my husband. It was not to be as I required an emergency hysterectomy at age 34 whilst extremely large fibroids were being removed. Almost one year on, I still feel the loss.

    Love and hugs.

    R x

  8. hi kate just read with interest your story bless your heart i had my total hystectomy just over 2 yrs ago now womb cancer and alls well im 58 now and i do have children so blessed but you say you have your stepson thats a blessing also. i do wish you all the best for your health. keep well and thank you for sharing your story. maria

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