I’ve been relatively passive on here over the last few months, but feel that the time has now come to share how things are and have been for me seven months (to the day) since my vaginal hysterectomy. Firstly, I should say that the site and the support and advice offered to and by the women on here is invaluable, and I haven’t interacted as much as I could have done.
My story pre-op isn’t much different than what you will have already read – two miscarriages followed by 2.5 years of abnormal bleeding and pain as well as charming PMT symptoms encroaching my life most days of each month. I was popping paracetamol like candy, trying every tablet and medical procedure offered, but nothing worked (in fact symptoms got worse with quite a number), and due to another health issue the strongest painkiller I could take was the paracetamol, and those of you with moderate to severe pain will know that it just doesn’t cut it on the bad days.
Anyway, the time came when my specialist said we had two options – the hysterectomy was next, or I could always just put up with it. I was 41 and had been married for 2.5 years. The effect that this had been having on my life meant that leaving things as they were really wasn’t an option, so the best I could do was find out everything I could and arm myself with all the knowledge so I would be prepared and could have the best possible recovery following the surgery.
Things got a little hairy on the day of the op when it came to light that I wouldn’t be able to keep my cervix (even though I had been in touch with my specialists assistant to confirm weeks beforehand). We discussed alternative procedures to enable me to keep it but that would involve either open surgery or rescheduling. Feeling slightly under pressure, the scheduled operation went ahead, meaning removal of my cervix (more on this later). I’d like to say it was entirely smooth, but unfortunately my bladder was cut during the operation. Yes, I know we are all explained the possible risks with any surgery, I guess I just hoped it wouldn’t happen to me. Anyhow, it did, and it meant having the catheter in for 10 days to enable the bladder to heal. Unfortunately I ended up getting a bladder infection requiring antibiotics, irritation from the catheter resulting in bleeding sores requiring painful application (by my husband!) of antiseptic direct to the wounds, and then finally, thrush from the antibiotics. Both my specialist and GP commented that with my “luck” it was not surprising – I have to admit to having moments of feeling like the unluckiest woman in the world.
Anyway, I got over all of this, was getting more and more mobile and recovery was going well – or was it..? I ended up back on bed rest about seven weeks in, as I’d been overdoing things; so right when I thought I’d be going back to work, I was going back to bed! To this day I don’t really understand what was too much, but, no point dwelling! I managed to get myself physically healed and at 17 weeks post-op I was finally able to commence my phased return to work – WITHOUT any painkillers. I was so excited to feel better than I had in years, to not be popping painkillers, and even though I have kept my ovaries, my PMT symptoms were nothing to write home about. I was “fixed” and I was SOO happy about it.
So why am I writing this seven months to the day of my op? Because my return to work was when things started to go really wrong. I have been signed off work for the past seven weeks because I have lost all confidence, to the point that I have trouble leaving the house, I can’t deal with more than 1:1 contact that I have control of, I can’t take impromptu calls or visits, I have meltdowns in the doctors office because it’s too noisy, and with each passing day I have lost a little more of me, so that now I do not know who “me” is. This came as a complete shock to me, but delving deeper into the World Wide Web it seems that this is not uncommon, especially it would seem with the removal of the cervix. Why didn’t I know this? I had prepared….or not.
It seems it really isn’t that uncommon. I am lucky enough to have an amazing GP and she put me in touch with another patient of hers who is going through an extremely similar situation, down to the phased return to work not working, and her confidence disappearing on her. We have discussed how through both of our situations and all of the medical professionals we have come into contact with we were never warned of this, and the talk of recovery was all about the physical, no hint that down the track we might be questioning ourselves as women – not about the op, believe me, I am extremely pleased to not be dealing with the bleeding and pain and everything that went with it, but honestly, I wish I had known a bit more about this being a possibility.
Every medical professional (including the counsellors I’m now seeing) tells me that this is normal and will take time and to be patient. I have mentioned that seven months on, I’m well out of patience. And my friends and family don’t really understand why I’m not “over it” yet – everyone seems to know someone who was back at work “six weeks after the surgery”, which seems to prove the point that the time it’s taking me is not “normal”. Or maybe more of us just need to share our reality. Which is why I’m sharing this now.
I’m not giving up, I am committed to finding “me” – even if that me is different to the me I used to be. I wish all of you recovering, as well as those of you considering, the very best journey you can have. This was not intended to put anyone off or to scare anyone. All I would say, is even when you think you know it all and are prepared, be prepared for the possibility you’re not.
Now 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.