The fight never stops – Joanne’s Story

I had a long history of gynae problems and therefore am very lucky to have three beautiful daughters. My husband and I decided we wouldn’t have anymore children, as we didn’t want our existing children to be put on or not have everything we could give them. Then, when our youngest was 6 and I’d had the mirena coil fitted for four years, I had an ectopic pregnancy. I was so shocked and obviously all the weeks following that, I was a nightmare. Emotions all over the place. I decided throwing myself straight into work thinking it would help, to pretend nothing had happened. My relationship with my husband and children was distance, as I felt like a failure.
From then on, I felt that having a baby would be the only way to deal with my pain ( pure sadness). A long story short, I talked my husband into trying for a baby, obviously I was up against lots of problems, ovarian tube removed, endometriosis, lack of ovulation etc, but I fell pregnant a year later.

By 9 weeks I had a miscarriage, after many tests to ensure all was well. My husband by this point was keen to have a baby. We left natural to take its course and a year later, I fell pregnant. Yet again I had a miscarriage, at 11 weeks this time.

During the course of all this heart ache, my husband and I talked and tried to spur each other on and keep our children close. We realised the hard way, that they too needed to be kept informed (in a child friendly manner), to stop them worrying and to try and understand why I or their dad was upset at times.
That was eighteen months ago, and we both decided we can’t put ourselves or a children through this sadness anymore, so no more babies! In theory this was fine and in daily life I tried to ignore situations where babies were about, but it was difficult. I continued to tell myself how lucky I was to have my family, and that’s how I tried to get back to normal.

In May this year, 2014, I’d been suffering with unbearable pain, I don t usually let any pain stop me, but this was so intense, all the time. I’d rather of given birth to 100 babies, at least I’d have something to show for it. After many scans, tests, laparoscopy, biopsies and procedures and being heavily drugged, with high doses of Morphine etc ( I don’t usually take paracetamols, never mind controlled drugs). I was told that I was one of the 70% of woman who experience lower abdominal pain, where a cause can not be found? I couldn’t believe it!! No explanation for the amount of debilitating pain I was in. So, finally I’d undertaken all my consultant had asked of me, I was allowed to be elected for a hysterectomy, as I’ve always thought the pain was from my uterus.

My husband had been with me to every appointment and we both talked about what was going to happen, surgically, emotionally and how everyday life was going to have to be organised (getting girls to school, clubs, housework done, meals made etc) and how we ( I ) needed to communicate my feelings.
It’s been 3 weeks and 5 days since my complete, abdominal hysterectomy. During the first week, I felt post operative pain, but so alive and ready to be well, apart from the sickness, but even that was better than I had felt for months. I was up and about within 2/3 days, getting a drinks, poodling around the house, tidying up light things.

By week 2, I’d tried to taper down from all the drugged I d been on, (Unfortunately I can’t just come straight off them, which is extremely frustrating). I felt tired and drained. My great ideas of going for longer walks didn’t happen bar once. I had visitors, but couldn’t be bothered to make conversations, just sleep. I continued to try and keep mobile round the house and build up what I could do without lifting.

By week 3, my sleeping during the day lessened and my ability to have energy started to increase. My scar seems to be healed over, although it does ache and feel tight when I do go for walks. My husband, has run himself raggerd, all this time and I’m not a great patient. I hate to not do anything, or to see him so tired. But he’s asking if I can drive not, will I ask the doctor etc.

I’ve started to feel like I’m letting him down, I probably could drive but I d rather leave it a week. Getting back to work is always on my mind, as I’ve been off since May and the pressure is on from them, which is completely understandable. I’m worrying about intercourse, although I’d rather wait at least another week, is that long enough? I know my husband would worry about hurting me, which is why we haven’t had intercourse for nearly six months.

All these doubts and worries are starting to get on top of me. I don’t feel I can express myself properly and when I try to, my husbands shuts me off. I’m beginning to get anxious, that he’s contacting people, perhaps for sex. Although, really, he doesn’t have anytime to fit it in. I guess I’m just insecure about being attractive after everything that’s gone on. He has been asked to go abroad for work for a week with work, which does happen occasionally, but I feel it’s to meet someone, however he d probably just like the break away to sleep.

I know I should have it out with him, but I think it’ll make him think I don’t appreciate him or what he has done, all this time. I’m sad there’ll be no babies anymore, I’m sad I’m overweight, I’m sad my girls are so grown up. Self pity is an ugly thing! I’m sure it ll pass, but I just need a hug to know it’ll be alright. A magic wand to make sure the pain won’t return, and to get life back to a healthy normal. One day perhaps!!

Hopefully week 4 will be better, now that I’m 35! Good luck everyone, keep fighting. X


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.

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  1. Hello there Joanne,
    I only recently joined this website as I had my hysterectomy only 2 weeks ago. My heart went out to you, I,m so glad things are looking up. I noticed you don,t mention the surgical menopause that you are certainly having right now…and whether you are on HRT? these can have a tremendous effect on feelings of anxiousness. I wholly recommend 101 handy hints for a happy hysterectomy, it had me totally prepared and told me many things that the medical profession just don,t seem to have time to. reading your story made me think you had very little advice as you were trying to do so much so soon…driving should at least be left for 6 weeks plus but I,d say 12 weeks! as for sex I would say at least 12 weeks again, although I know you had had a long spell of being unwell so this time seemed like longer.. I think this may be a problem for many of us as the pain in the uterus before the hysterectomy leads to very painful sex..this is covered in the book and may well be a good purchase even though you are now 8 weeks past. I am following a special diet for the menopause and it seems to help all round, plus certain herbs known to help, as I am feeling so well and have decided NOT to take the HRT as yet (It was planned i should have it as soon I had had the hysterectomy)
    I also am very lucky to have 4 amazing children and do feel that sadness as I love children, but as 2 of mine have grown up who knows they may have their own soon, and we are also considering fostering if you have space for a child in your heart.
    I was so glad to read in your update that things are improving and as the other readers have said it takes time! Time is the key..and rest and short exercise, something us women find very hard to do!! Sending you lots of hugs and keep us updated! much love Ruth

  2. Thank you so much for your support. It’s been 8 weeks now and the emotions have hit with such an impact. It’s only now I realise, I ve putting getting physically better, too far up the list of priorities and in fact emotions are always going to kick in, which are a huge part of recovery.
    My husband is and always has been amazing. I push him away and lock myself into a ‘ I can do this by myself mode’ too often, but he s always there to pull me back and pick me up. As was mentioned above, he s in for the long haul. The key is to always communicate, I’ll eventually master this art ( hopefully!).
    I just don t give myself the credit I deserve. This is going to take time to find the me again, after everything, but I am trying to stay positive for me and my family, that one day it ll just be a learning experience rather than a big boulder in the way of real life.
    I really appreciate the words of wisdom and wish everyone a very happy new year. Here’s hoping things can and will only get better, providing support emotionally and medically , for every one of us.
    Best wishes.

  3. Dear Joanne, I feel so much frustration when I read your story. I had my complete abdominal hysterectomy in January of this year due to severely abnormal cervical cell changes which hadn’t responded to several attempts at treatment. During the course of the hysterectomy they also discovered that I had some sizeable fibroids growing outside the womb which had been causing me all manner of problems for a very long time. The advice I’d like to give you is to have patience with yourself. You’re going to need it. The medical profession don’t tend to give you all the details prior to hysterectomy. They tell you that you’ll be feeling fine within six to eight weeks. Now, I’ve heard stories of people for whom this has been the case but I can categorically state that I’ve never met any. At the six week point I was feeling total frustration, just like you. Frustrated that the things I had to do weren’t being done. Frustration that I wasn’t bouncing with energy. All I could see was an escalating mountain of ironing and the dirt on the kitchen cupboards. Unmade beds and people I had made promises to before the surgery who I ended up having to let down. It seemed never ending. In June, five months later, I needed someone to drive me to the hospital for my appointment because I couldn’t even manage that. I thought I’d never have energy again and gave myself such a hard time about it.
    Unlike you I never had children. Apart from my early twenties I never really wanted them either but I also wanted to keep my options open. There is something so final and definite about the word ‘never’. I didn’t think I was going to mourn the loss of my fertility, especially considering how it had blighted me for so many long, painful years but I did. It’s only natural. It’s the end of an era and that was something that I had to work through.
    Now though, nearly eleven months later, I am fighting fit again. I don’t have my monthly problems weighing me down and I’m right back into my old routine again. I’m also at peace with the fact that my baby making days are over. For me it was a case of admitting to myself that the reality of having children is a far cry from that hormone driven ideal I had. You have to find your own way through that though. At some point in your life it would have come to an end anyway. It does with every woman. We all have to find our own ways to make peace with it. It’s a hurdle we all have to face, sooner or later.
    I honestly can’t advise you about your relationship with your husband though, except to suggest that the exhaustion you are feeling and the weight of unrealistic expectations you have for this point in your recovery may be skewing your viewpoint? If your husband has been supportive up until now then it would seem he’s in it for the long haul and will be there for you until you are ready for him, and you will be. Just not quite yet.
    My advice is to be patient and loving with yourself. You’ve been through the wars. Give yourself some time and then give yourself some more time. It might seem like a very long road but it does have an end and when your body has finally healed itself and dealt with the trauma of surgery and the emotional loss you’ll be a whole lot stronger than you ever were before.

    Sending love and support

    Elizabeth xx

  4. The medical profession seriously underestimates the impact a hysterectomy can have on a woman. It affects your sex life, your relationship with your partner, how you feel as a woman, leave you coping with menopausal systems even if you keep your ovaries, plays havoc with your libido and takes a long time to
    recover from physically and mentally. For some women it signals the end to any hope of having children of their own. Sadly until these issues are recognised by GP’s, consultants and anybody else who is involved and counselling is provided as a matter of routine to anybody who needs it women will continue to suffer.