My hysterectomy resurrection story – Kerry’s story

I’m writing this for all the women out there who are facing the prospect of a hysterectomy because this is my hysterectomy resurrection story. Maybe you feel scared of the unknown. Maybe you’ve read some crazy horror stories about the procedure. Maybe (like it was with me) it’s your first ever operation and you’re absolutely petrified. I’m writing this for anyone who has any fears at all because I want to tell you all that it will be ok and will much more than likely not be as bad as you think. It’s difficult to know how to begin my story, other than to marvel on what an incredible journey it’s been. A journey with lots of ups and downs, highs and lows, but one that – no matter how hard and testing – has all been worth it…

My story is very different to most of the others on here. Firstly because of how my illness was discovered and secondly because of my age. You don’t get many women at 29 having to face the prospect of a hysterectomy. But I’m not asking for pity and I certainly don’t think I need it. I’m just telling it as it is because I want people to know that it’s not just middle-aged women that are prone to this type of surgery. It can happen to anyone at any time, any age – no matter how healthy their lifestyle is. I know that better than anyone, because it happened to me.

Here’s a little background about myself and my situation. I’d always suffered from extreme periods ever since my first menarche at the age of 12. I’d be in agony every month and it was the one type of pain I couldn’t stand. They’d be so heavy that, without going into the graphics, they’d be difficult to keep under control and I would often wonder why other girls I knew never seemed to be in pain. What was it about my periods that were so different to everyone else’s? A few years later, the contraceptive pill eased the heaviness of my periods, but the excruciating cramping still remained. However, I was grateful for small mercies and continued to live my life…

By about the age of 20, I started to get very bloated for no apparent reason. My stomach would suddenly expand and I would look as if I was pregnant. Admittedly at the time, I was slightly overweight by about 2 stone, so I just put it down to that and eventually joined a gym and began to eat healthier. I remember losing weight and toning up but despite it all, my stomach was still there; bloated, round and grotesque. No amount of healthy eating or gym work could ever make it go away.

I was about 23 when I first went to the doctor. I showed her my stomach and how bloated it was and she just looked at me and told me I had IBS. No tests, no further questions, nothing. She advised me to go on the FODMAP diet and simply left me to it. I did what she said but nothing improved and eventually the FODMAP diet simply fizzled out. 4 years on from that, I went to the doctor again (a different one this time) because the bloating was getting even worse and I was getting a lot of pelvic pain. He sent me for an ultrasound of my abdomen which came back clear, and again nothing else was done. If, however, he had suggested an ultrasound of my womb then it would have been a very different story…

In a nutshell, I’m quite healthy. I don’t drink in excess, I don’t smoke and am an extremely active person who runs 10Ks and is a regular gym bunny. Looking back, I think that’s why I was able to get used to my symptoms and live with them. But in December 2017, just before my 30th birthday, it all came to a head. I’d noticed that I was struggling to pass urine and had been for a couple of weeks until one day I went into complete retention. I was supposed to be flying out to Frankfurt for my partner’s 40th birthday – instead I ended up in A&E with an emergency catheter because there had been over a litre of urine trapped in my bladder. An ultrasound of the bladder, kidneys and uterus finally revealed a 12-cm mass in my womb. As a result, my womb had become lodged in my pelvis and was pressing on my ureter, the tube that leads from the kidneys to the bladder. It was this that was preventing me from passing urine properly and it was also causing my left kidney to swell. It was also (as it turns out) the reason for my pregnancy-like bloating and heavy periods that had all been overlooked for so long. An MRI scan uncovered the mysterious mass as a grapefruit sized fibroid that apparently looks like a cancer in the images, but the blood tests and CT scan have all come back clear, so it’s more likely to be a benign fibroid that has been there for so long it has degenerated and lost its blood supply (hence the reason for its dodgy shape). I’m fully aware that fibroids are very rare in people as young as myself, however it’s still difficult when I look back to the amount of times I visited the doctors and left without any resolution – especially when my symptoms were so glaringly obvious!

The next step was to decide on the best course of action. My consultant discussed a procedure called a myomectomy which is where the surgeon makes an incision and enters the womb and attempts to remove the fibroid and keep the womb in-tact, preserving a woman’s fertility in the process. However, due to the size and large blood supply of my fibroid (and also the slight suspicion of it being cancerous) a myomectomy was risky and I could have haemorrhaged during the procedure which could have resulted in my womb being taken anyway. When my consultant told me that the only real option was a hysterectomy, my whole world stopped. Then, within days, I began to feel relief. Yes, a hysterectomy would mean never having children but on the other hand, I felt as if I’d been right all along. That all the bloating and pains I’d suffered with were never normal, that there had always been a reason for it and now, finally that reason had been discovered. And better still, there was a solution that would take it all away forever and would give me a new life! After a long conversation with my partner and family, my mind was made up and I decided to go ahead with the hysterectomy…

Due to my age, and the complex nature of my fibroid (it’s large size and the fact that it was pressing on two of my major organs) I was referred to a specialist surgeon at a different hospital. I was apprehensive as first, but as soon as I met my surgeon for the first time, I knew that I was in the best possible hands. She was so attentive and positive, knew exactly what she was doing and I knew straight away that she was the surgeon for me. Tuesday 6th February 2018 was the day that she gave me a new life. She had to be quite invasive during the operation because when she opened me up, she found that my uterus had expanded to the size of an 18-week pregnancy and had pushed my bladder right out of position. As a result, she had to remove the womb and then pull the bladder back down to where it should be. The consequence of this is that my wound runs vertically (rather than horizontally along the bikini line) and goes from the bottom of my pubic bone, up and around my belly button to the top of my abdomen. This gave my surgeon maximum access to my organs and as a result, my hysterectomy was a huge success. I woke up in some pain (similar to period pain but nothing compared to the excruciating pains I was used to) but felt comfortable. The first two days were difficult because I kept being sick and couldn’t walk properly or sit up straight, but from the third day onwards, I’ve become stronger and stronger. Every day, I can do a little more than before and even though there’s a long way to go, I really do feel blessed.

In life, things don’t always go to plan. People think that you meet your partner, get married and have lots of lovely babies and that it’s all mapped out. And for the majority of people, that probably is the case. However, for me, it was never quite as simple as that and looking back, I think that there was a reason why I was always unsure as to whether or not I wanted children. My uterus has never done me any favours and after everything I’ve been through since my first ever period, I’m certainly more than happy to see the back of it. I’m not even 2 weeks’ post hysterectomy yet and already I can feel the benefits of having my womb removed. I feel lighter (12lbs lighter in fact!), healthier and much more positive. As soon as I can hit the gym again, I can’t wait to tone up my stomach and finally say goodbye to what is firmly in the past. Yes, there’s a scar and I won’t be able to cover it as it’s not along the bikini line, but I’d rather have a scar that I can be proud of than have carried on living like I was. You certainly won’t catch me hiding my body away in swimming costumes when I next go on holiday!! So, in short, what I’m trying to say is that my hysterectomy experience has been a really positive one and if anyone is ever scared of the unknown when it comes to this procedure, then please don’t be. Be brave, grab the bull with both horns and when you’re all recovered 12 weeks’ post-surgery, you’ll be able to look forward and know that you can finally lead a pain-free life…

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  1. Hi, My story is also remarkably similar to yours… remembering the pain and suffering through my teens, the pill giving me welcome relief for a number of years. Until my partner (now husband) wanted to try for a family. Fast forward through all the tests and scans and different meds and injections, of which there were many. My uterus was that of a 20 week pregnancy. My surgeon said watermelon! I’ll never hear that sentence from dirty dancing the same way again! 19th March was my total abdominal hysterectomy surgery.. we thought long and hard about the surgery, but there was nothing else that could be done to stop what was happening. I feel sad that it had to happen but happy that i / we have our lifes back and its been rather liberating in a weird kind of way. Not worrying about accidents or incidents, leaving early or too sick to go anywhere. Back to work after 6 weeks. Now just starting on some light phys and looking forward to getting back on my bike, and to life! xx

  2. Great to hear you’re doing well.

    I had a subtotal hysterectomy and removal of many fibroids, the largest being 42cm. I’m doing surprisingly well, and tons better than my fears led me to believe. My surgeon has performed a miracle (to me) by only having to cut a thumbs nail height above my belly button, when previously I’d been advised of the cut being to my breast bone. So that was an immense joy to wake up to. Every day I feel stronger and more capable if doing life tasks again. I had wasted far to many years worrying “what if?” About surgery and trying methods to shrink the ‘monsters’ to now have them gone and my cervix and tubes still where they need to be, is beyond amazing for me. Take time to heal and recover you have the rest of your life to roller skate and jump out of planes, ladies x

  3. You’re welcome Jessica really happy you could relate to it! Have you had your surgery? Hope it’s gone well xxx

  4. Hi Lisa,

    I had my surgery at St Mary’s hospital in England. So not in the USA. How are you? Have you had your surgery? Kerry x

  5. Hi Rebecca!!! Wow I can’t believe it! It’s crazy that our stories are so similar and even crazier that our ops were done on the same date!! I feel like physically I’m 100% now but mentally it will just take time. You’re also not far away from me either I’m based in Manchester. Sending you best wishes and hope you’re recovering well too xx

  6. Hi all,i had my hysterectomy, laparoscopic style ( uterus and tubes) on friday , was discharged on the sunday with a bit of expected discomfort and stiffness. I slept well sunday night and felt well enough to do some easy cooking. By Thursday i felt wretched had diarrhea and a pretty annoying cough and not sleeping of a night. Wednesday night i had a blinding headache which was on the whole ledt side of my head causing pain in my ear and my eye painful even to touch. My entire body is aching and im constantly exhausted . Hoping to improve soon.
    Thankyou for sharing your story Linda

  7. Hi Kerry. I truly can’t believe this…. apart from our ages our storys are absolutely identical I’m 40. I even had my hysto on 6th February 2018. My fibroid came back 22cm. Also 12lb lost…. I’m in England in staffordshire. I’m really very teary today so seem to be struggling pyschologically a little more than you but your story and positivity has really helped. I’m teary cos I’ve just been signed off work for another 4weeks…. when all I want to do is get back into my normal routine and back to work/life/gym.

  8. Thank you so much for sharing your amazing story. It is almost identical to my situation, fibroid size and all details. Can you share the town and hospital where you had your surgery? I live in Tennessee and I’m looking for a physician with the same credentials as you described with your physician. Wishing you good health and a continued success with your recovery. Again, thank you for sharing,

  9. Thank you so much for sharing! I am 34 and will be having a hysterectomy soon. I already have two children but I can relate to everything else in your story. From doctors overlooking symptoms, to heavy periods and pain all throughout life. I was just learning to live with it until I saw a doctor that went the extra mile and listened. I feel like this is more of a blessing now and I feel very humbled. Thanks again Kerry!