Emotional Roller Coaster – Susan’s Hysterectomy Story

Hi to you all, I don’t know where to start really, I’m not sure if I have enough space here to tell you the whole story but I will try. Okay I’m 44 years young, married to my wonderful hubby for 17 years but we’ve been together for 27 years! I can hear your brains calculating how old we were when we got together…well I’ll tell you, we were both 17 years old. Yes babies ourselves really. I went on the pill once we started to have a sexual relationship, I really didn’t want to be a young mum, so many girls where I grew up were all falling pregnant and then being left on their own with the baby and I knew that wasn’t what I wanted, plus I didn’t want to disappoint my lovely mum dad.

By the age of 20 I was experiencing excruciating pain on and off, but thinking back this pain had been with me for many years before that, before I had even started to have sex, my mum took me to the doctors on a few occasions and he just used to say it was ovulating pain and take painkillers, which I did, the pain passed and then I would forget about it until the next time. But as I got older this pain was getting worse. I had private medical cover through my place of work so i went back to my GP and demanded I was seen by a specialist. I saw a gyne in London who did a laparoscopy and he told me I had terrible scarring, cysts on ovaries and I would need too be opened up to sort this out. How did this happen, why did this happen to me, but this would explain the pain, as I had been getting for years and years.

It turned out that he thought the scarring was caused by my appendectomy that took place when I was aged 7. I went in had the op but something went wrong. I remember very clearly the pain I was still in after the op for the appendix, I couldn’t stand up straight, I had a constant high temp and after three days the nurses had the doctor look at me, the next thing I’m rushed back into surgery and had to be opened up again. It turned out that I had a burst abscess and basically it was poisoning me. I remember waking up from the second op in terrible pain, my poor mum and dad was so scared, I had this huge tube hanging out my stomach to drain the poison, I ended up staying in hospital for one month and three days, yes I remember exactly how long!. Little did we know that was going to cause me so many problems later in life!!!

When I was discharged after the op from the hospital aged 20 I didn’t really take in what he said to me, I may have problems conceiving but I should take the pill just in case, and so I did and for the next few years I was almost pain free, still had bad days but nowhere near as bad as it was.

Anyway by the age of 24 I was back in to see a specialist and yes scarring again and cysts and another op! I was told after this op that my tubes were now badly damaged and I would need IVF to get pregnant 🙁 So at the tender ages of 26 we had a first free go of IVF on the NHS…it didn’t work but we were young so we bounced back from it, there’s always another go later on!.

Over the next 10 years I ended up having another three surgeries for the same thing, another three goes of IVF in between and still no babies. We were now getting desperate but I was then told that my eggs were basically rubbish, I wasn’t producing any viable eggs so I would have to have donor eggs if we wanted a chance. We went on a waiting list at the Lister Hospital in London, four years we waited and finally we got the call. So we commenced donor IVF, we were so sure it was going to work, not my eggs so it must work…sadly it didn’t, we were devastated. We couldn’t go on like this, plus my tummy was still playing up.

So, a couple of years ago I saw a new specialist and she done scans etc and she said the best solution would be to open me back up remove the left ovary and tube, this was the side I kept getting really terrible pains and the cysts, she would tidy up the scar tissue and hopefully that would be it. I had the op and I was okay, although a couple of months after this op I started getting hot flushes etc…the menopause had struck. I really felt sorry myself how can this be happening to me.

They left the right ovary in tact so this wouldn’t happen and then that ovary lets me down…so I start the merry go round of HRT, I had to try three different kinds before I found one that suited and I have to say I did feel better for a while, then the dreaded pain comes back, terrible pain in the left side again, swollen tummy and that sensation that I was bloated, I knew what it was but I couldn’t believe it, I didn’t want to believe it I suppose, not again PLEASE.

So this year I’ve had more scans, MRI scans, then more scans and I was told this month that basically I have severe scarring, this time its wrapped around the bowel, bladder, basically my pelvis is frozen, stuck down by scar tissue. I also have fluid in the left side, where they left some of the left tube, I didn’t know this until the specialist let slip that in fact she couldn’t remove the left tube properly because of the state of my stomach inside, hence the buildup of fluid. The icing on the cake is they found three fibroids, which are not too big at the moment but each scan I’ve had they have grown a little bit more. So I am having a hysterectomy on the 22nd November, about six weeks time.

My specialist has told me that it will be a big op, a bowel surgeon will be in there because of the scar tissue strangling the bowel, basically she said it will be a dangerous op but it is the only answer for me. I know the scar tissue will come back, I’m obviously one of the poor women that are more prone to it BUT if everything is removed then it shouldn’t cause me so much pain. To be honest I’m at a point in my life where I’m just numb about it all really, my body has let me down so much, my whole adult life, well since before then, I’ve been in pain, I’ve been operated on so many times my stomach actually looks like I’ve had six kids by Cesarean, if only that was the case!

Sometimes I wonder if I hadn’t had so many operations would it be as bad as it is, should I have said no to these ops over the years, but then I listened to the specialists and went with what they said, if only I could go back in time I know I probably would have said NO to these ops.

Anyway at the end of it all we still have no children, we’ve spent thousands on fertility treatment in between the ops, I’ve also always held a full time job, which at times has been a struggle but I have to work, and I just feel like it will never end.

The saddest thing about going through all of this is my hubby, he has stuck by me, I wouldn’t have blamed him if he had walked away, he could have had children with someone else, he could have had a completely different life but he didn’t he chose me and for that I admire him, love him, adore him even more. People often ask me, how can you still be with someone who you met when you were just 17, you don’t have children and your still together. I always say that we are a normal couple, we’ve had our ups and downs as any other couple does, there were times when our relationship was hard and I thought that it was over but we love each other, we fought for what we do have, he is my soul mate, my rock and I hope that I am his, yes life has thrown a lot of crap our way, in between all the ops and IVF my dad passed away, followed by my mum and then my husbands brother. I know that we have been there for each other and I don’t know how I could have coped with out him by my side.

Well I told you it was a long story, I’m sitting here typing this through my tears, memories that hurt like hell, my emotions sometimes get the better of me as hard as I try to fight them, sometimes I just can’t, I have to let them out but no ones see this side of me. I always manage to go to work, to chat with friends and family, I put on my brave face and get on with it, my tears are my secret. Over the years my brothers and brother in laws have all had their children, our beautiful nieces and nephews and now their having children so now we have four great nieces and nephews, yes it has hurt inside when they were being born but we love them to bits.

So I’m hoping that after the 22nd November it will be the start of a fairly pain free life, the donor IVF will also be put to bed, that chapter of our lives completely closed, as sad as it is I think were both ready to live the rest of our lives as childless, although we have recently been speaking about fostering, but first things first, lets get over this hysterectomy and see what life throws our way!.

Best wishes to you all
Susan

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