Christine from Germany and her Hysterectomy Story

Type of Hysterectomy: Total Abdominal with horizontal cut
Age at Hysterectomy: 47
Location: Germany, Heidelberg

As far as I was aware I was healthy. Sure, I have always been a heavy bleeder but I took no notice. No cramps. I was fit, happy and healthy. I had just moved, it was summer and hot. I started getting this eerie vertigo feeling where the floor kept swaying up and down. I saw a GP, an ear specialist and a neurologist in the space of a week, and I was told I was healthy. Just the heat, low blood pressure and exhaustion. They gave me pills to stop the vertigo (they did do just that: switch off the body’s warning sign) and two days later I collapsed and was taken to hospital by ambulance on the Saturday. Severe anaemia. HB 7.4. It wasn’t in my head. It was real. At that point they didn’t know what caused it. So I had an endoscopy on Monday, a colonoscopy on Tuesday, and a gynaecologist saw me Wednesday: fibroids. Three of them. I was told the uterus had to come out. That my next period was due in a couple of days and that they thought I should not risk another one. Apparently stranger blood transfusion increases your risk of dying after an operation by 30%. Several doctors were involved and it’s a university hospital, I was so ill and weak. They told me that I had no choice. So they operated on the Friday.

As I arrived by ambulance nobody knew what caused my anaemia, and the checks took a while. Therefore I had been in hospital for a week before the operation. I was so weak that I couldn’t walk unaided. One night when taking the diuretics for the endoscopy, my blood pressure had dropped to 60:40. From just after the diagnosis to the operation they gave me sedatives as I didn’t stop crying. Everybody was lovely. It’s a hospital run by the university and catholic nuns. I felt so cared for. As it was summer and everybody on holidays, I even had a four-bed room to myself.

The operation went smoothly. I was back in my room at lunchtime. I have no real memories of the afternoon, just snippets of my mum, flowers, my sister, standing up with the help of a nurse. The pain started in the evening. My back hurt and I had a headache. I had some painkiller intravenous and a pill. The night was bad. From the next day onwards I was pretty pain free. Lots and lots of painkillers though. Just getting out of bed was difficult. I remember trying to sleep on the side, but it felt like all my organs kept swishing around. I was really weak – walking the 50 metres to the hospital garden was so hard!

The catheter came out on Monday I think. I stayed until the following Friday. Bowel movements were fine. I loved the hospital. It was great. In total I was there for two weeks but just one week after the operation. That is normal here in Germany. We all stay that long.

At first I was a textbook recovering princess. I walked 250 metres to my mum’s each day. Slept there for an hour and walked back. I wasn’t in pain, just extremely tired. My mum lives in a home for the elderly and the other residents always joked with me as they were walking faster than me with their Zimmer frames! I had an infection on the scar in week three, which cleared with antibiotics. In week four I developed a cyst on an ovary but that cleared on its own. I was allowed back to sport after six weeks. The joy of seeing my sport friends again was unbelievable! In week 8 I returned to office work (12 weeks is standard in Germany but you only get full salary for 6 weeks). Tired but ok and on the mend.

Then it all changed. From then on it was: Difficult. Hard. Still on the road.
I had a numb feeling from my ribcage down to just above the scar. And an odd dull ache pulling from hipbone to hipbone. The gynecologist said everything was as it should be inside. That they might have cut through a nerve, and that I should just lose the post op weight gain to feel back in control. Else “to pull myself together and ignore it”. I really, really tried so hard to do that. Anyhow, then my ovaries stopped working properly and I was depressed and started getting panic attacks. I was so up and down with my emotions anyway. The shock of losing my last chance for a child, the sadness and anger when people you thought of as friends don’t even visit you in hospital – and the joy how many people are true life-long friends. The gynaecologist had said to pull myself together, which meant I didn’t seek help for far too many months: In the end estrogen solved it within a few days.

I go to the gym four times a week, and all of a sudden I had a pain under left arm to my chest. A mammography was done, it was clear. No cancer. I thought it was a gym injury but in hindsight my muscles started to show that I was standing wrong.

A few months later my back just below the shoulder blade started tingling and being numb. Physio and massage and sports, nothing helped. I was really in constant agony and could not breathe properly towards the end. I had episodes of hyperventilation due to the pain. These episodes are so scary, in Wikipedia they say it causes fear of dying. I was sent by my GP to see a cardiologist (pain chest, left side) and a psychologist (psychosomatic pain). Both gave me a full clear.

And now: an orthopaedic specialist I saw on my own initiative looked at me once, did an XRay…. turns out my pubic bones have been shifted out of place during my operation. They grate against each other and I have a symphysitis. In a week I have my MRI. It might be that I will be pain free in a few weeks or months!!!!!

I learnt: don’t ever give up. If you are in pain mentally or physically, then you have something. Just because one doctor cannot find it, doesn’t mean you don’t deserve help and relief – you are in pain, you most likely have a physical illness it’s just THIS doctor doesn’t know!

Other than what I wrote in the earlier question about hip pain, numbness and depression which I hope will be gone once the symphysitis is gone: My skin is rosier with the anaemia gone. I have not had a single cold or sniffles this year! I don’t regret the hysterectomy as the doctors said that I had no choice. I try not to think about that at all. I cannot despair – it’s what it is.

It’s not easy. Healing is hard work. Just be patient – the road can be long, but it’s hard even for those who heal quickly. Beware: it’s not just the cuts and scars – hormones will give you wild mood swings, nightsweats and much much more! Don’t drop people you feel aren’t real friends. Give yourself and them time! Don’t feel abandoned. Not loved enough. Hormones change the way you look at the world. Your husband, colleagues might want to be there but just don’t know how! You might feel different next week. Hold tight and try to get through the ride!

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