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Not Prepared For Hysterectomy – Jan’s Story

Hi everyone. My name is Jan and I had a hysterectomy in 2014. Since 1998 I had a history of abnormal cervical smears which were treated in different ways many times. During that period I also had VAIN 2 pre-cancerous cells in the vagina. I have had bleeding in the urine from sept 2013 and was told it was looking like bladder cancer and was kept in hospital and underwent several tests. It wasn’t thank God. no reason for bleed given. Then as I still had abdominal pain and a history of ovarian cancer with grandmother they investigated me for possible ovarian cancer. Transvaginal scan ok and ultrasound fine. Then they investigated my bowel.

I had had enough it was Christmas and family birthdays and I believed it was IBS and the codeine I was on due to hip pain after a road traffic accident. Moved house early this year and had the tiniest show of blood. Mentioned it to GP as she was diagnosing scarlet fever. Sent me to gynae. Got a shock when they did an ultrasound and I was told, you do know what we are looking at here? No? Uterine cancer. The scan showed the lining measurement had gone from acceptable in November to 13mm in March, but it was difficult due to severe atrophic vagina and retroverted uterus. I was booked in for a hysteroscopy. It failed as vagina had adhered front to back.

Two options, use oestrogen for six weeks and go back for another transvaginal or with the history I had just go for a hysterectomy. Thought it out and said ‘hysterectomy let’s get rid of my gynae problems’. Long wait and I couldn’t sleep or eat. So I opted to use my savings and go privately. Booked in very quickly for full abdominal hysterectomy with ovaries, tubes and cervix to be removed.

Terrified like you all I guess. Very painful few days in recovery as I can’t take morphine and they didn’t get my pain relief managed yet had me trying to stand up which had me faint and dizzy white and waxy and collapsing. When tested low blood count.

My bowel was adhered to my womb so I had terrible cramps and bowel pain with constipation. Despite the laxatives they gave me I was twelve days before being able to go to the toilet properly. After five days I was discharged after my brother in law almost flattened the physio who had me walking when I was due to take pain relief and in agony to start with. We had previously agreed to manage the pain then mobilise.

No GP follow up due to me going private it seems no nurse follow up. Had to self-evacuate which was the most distressing painful scary situation as the district nurse refused to come out and give an enema. Massive bowel problems after that. However, got a call to say all clear no abnormalities and no reason given for the assumed thickening of the uterine wall. Fantastic news for me and my girl’s
Painful urination now for six weeks as I am six weeks post op. had two lots of antibiotics and it continues. The swelling I have below my incision on my pubic mound is huge and I am very distressed about it – I look like a man down there and the labia hang down heavily. It disgusts me – it is not my body. I am trying to get used to the scar which seems very tight and is larger than explained – I assume due to the complication with my bowel. I was told all the way through I would be fine in six weeks – now I know differently. I am still in pain getting from lying to sitting up or from a low chair to standing. I have difficulty turning on my side in bed and getting my socks etc on. I feel and look huge. Granddaughter asked if I had a baby in my tummy! I have always had a good figure and a flat stomach!

I have been very lucky and I feel very lucky now that no abnormalities were found as a friend of mine has had a very different story so I feel a bit weak in stating how I feel and look when I know what a battle she has had (and only recently won I am happy to say).

Not one of the consultants private or NHS prepared me for the recovery and the physical emotional and psychological journey involved in this huge operation. I know I have a long way to go as my GP says it will be a full year to full recovery.

Just to say don’t panic like me and rush in with the op without understanding the implications and longer term risks involved as I was only ever told the risks involved at surgery. It’s emotional and it feels lonely at times. Glad of sites like these. Good luck to everyone and if anyone has travelled the same journey I would be only too happy to hear their comments.

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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.

Linda Parkinson-Hardman

Transformational counsellor, coach and women's health advocate. Professionally I'm an information scientist who specialises in change management, culture change and adoption of digital technologies in large enterprises and organisations. I am a writer and author of nine books to date, and I've edited a further seven; phew what a lot for a Thursday afternoon :-)

This Post Has One Comment
  1. Hi Jan, I hope you’re feeling a little better since you posted in June? I was expected to have a hysterectomy in Feb but after opening me up the surgeon discovered my cancer had started to spread and I had my lymph nodes taken out instead, then had chemo/radio. It’s now July and I’m still having problems with my bowels/waterworks. I don’t feel I was prepared by the nurses or even the cns to what I would face after surgery/treatment. When I came to after surgery I couldn’t feel my leg! No-one warned me about possible nerve damage. I still have a long numb/tingly patch down the left hand side of my leg. No-one even told me I’d have staples, not stitches. Or warned me that my pubic mound would swell, which has only happened recently! The Dr I’ve seen at the hospital was dismissive to say the least, and the cns said ‘eeuurrggh!’ when I explained it was swollen! Dr says it’s not lymphodaema but surely the swelling is related to either the surgery, removal of the lymph nodes or even the HRT I’m now on?! I really am appalled at the lack of aftercare, advice and support and it’s only by looking on the internet that I’ve found anyone else talking about these issues.

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