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Hoping for a Silver Lining – Amanda’s Story

I have finally been given the chance to have a hysterectomy after around 10 years of symptoms!!

I didn’t know what the problem was at first, I just kept getting exhaustion and anaemia. I have had two large babies (16 and 21 years old now) by C-section and increasingly, over the last five years in particular, I have been suffering with lower back pain, swelling of the abdomen and pain in one hip and down the leg and utter, utter exhaustion. It never occurred to me that the hip pain would be connected to my uterus! I was sent for a scan of my hip, which came back normal.

I then had a Mirena coil fitted for 4 years, which stopped my periods completely and was great while it lasted but the hip pain never went away and was, in fact, was getting worse. Eventually I had it removed (the Mirena, not the hip! Lol)

Last autumn I started having heavy bleeds. These were not heavy periods, I knew that, but kept being told they were just heavy periods. We know our own bodies. Apart from the fact that they were not in any pattern, the blood flow was too red and far too clotty and the flow was relentless.

During the worst bleed I ended up in my doctors surgery where she took one look at the state I was in and told me to go straight to A&E. Luckily enough I did not need a transfusion and eventually the bleeding stopped. To date I have had 4 of these bleeds. One in October, two in January four days apart and one in March.

After a further scan by a specialist it was discovered that the large fibroid (that I had been told I had for many years) was actually a focus of Adenomyosis (or a large Adenomyoma). My uterus was bulky and I had Adenomyosis in all of it. From what I have been told I had been having some kind of rupture and this is what was bleeding. I have never ever felt so tired in all of my life.

I can honestly say that it is debilitating as some days I cannot get out of bed and on others I have to have an afternoon sleep….not good when you have a job. I find it so hard. My DH calls me Womble, as I am always tidying up and organising stuff usually, but at the moment I cannot operate normally at all.

I am scheduled to have a hysterectomy in 2 weeks and I would be interested to hear from other ladies out there who also suffer with Adenomyosis. There is not a lot written on it out there but it has severely affected my life style and I cannot wait to have my uterus taken away. Fingers crossed that I will start feeling better again after 10 years of living with it.

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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.

This Post Has 4 Comments
  1. Hi it’s so nice in a good way to here some one got the problem that I have had I’m too going in 3 weeks to have my op the full hysterectomy so scared has it will be a cut in the middle of my belly I have a lot of adhesions inside the somb and out xx so finally they have listen to me I had key hole surgery to remove cysts and fibroids but they could not do any thing it was so bad inside xx keep in touch and hope your op goes well Jayne hetherington find me on face book or twitter

  2. My stomach is also swollen due to large fibroids. Will this go down after the op? I look 4 months pregnant now.

  3. Hi good luck with your surgery, I have to say at 43 and having a huge fibroid which pushed my uterus to 14to16 weeks in size with endometritus thrown in massive blood loss huge clots not been able to get out of bed some days I now feel fantastic I am so pleased I opted for the hysterectomy its like a new lease of life, more energy and best of all my life back, good luck x

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