Welcome everyone! It’s week thirteen of the “On Being Childfree” blog series and I wanted to say a HUGE thank you for your continued support. Every week the post is the most read on my blog and I receive emails from people wanting to take part and DMs on Instagram that people are finding this so helpful. This week I’m delighted to welcome our eleventh guest story, Tasha. Tasha’s story is heartbreaking and may trigger some of you so please read with caution. She is so incredibly brave to share how infertility has affected her life for more than 20 years. Please do read, leave a comment and share as much as you can, I’m really willing this to grow and grow so that we can help as many people as possible who may be going through something similar.
We Are: Tasha and Ian, 40s
Home Is: UK
Have you ever wanted something so much that it hurts, I mean really hurts? That deep down ache that just won’t go away. You go to bed thinking about it and it’s the first thing you think of as you wake up. You dream about it, to the point it seems real. And even though you know it’s never going to happen, you still long for it.
I am talking about having a child. I will never hear someone call me Mummy, I will never receive a Mothers Day Card, or the first day at school, the nativity play, the paintings for the wall. I will have none of these things. Why? Endometriosis is why. AKA The Evil Bitch and all its consequences.
I’ve had a lifetime of procedures. 5 operations, 4 failed ICSI treatment, countless blood tests and scans. Finally, we decided that enough was enough and I opted for a hysterectomy. I knew it was time to get my life back, for my husband to get his wife back and close the endless cycle of failure.
I started writing this soon after my hysterectomy in 2011, so some things were and still are very raw. But without honesty, what do we have? Writing my story hasn’t been easy, and I’m sure reading it for others won’t be easy either. I hope it isn’t too triggering so please be warned that it may be a difficult read.
Whilst going through our problems in the 90s and 00s there were no ‘self help’ books out there. Yes there were books on ‘boosting your fertility’ or ‘how to eat your way to pregnancy’, but nothing aimed at a young couple with ‘unexplained fertility’ or even about Endometriosis and infertility. So this is my chance to share my experiences of the past 20 years in the hope it may help someone else.
People tell me to get over it and move on but if only it were that easy. My heart still breaks when I see parents scream at their children, I want to shake them and make them realise how lucky they are, what a miracle parenthood is. Too many people take it for granted when all I wanted was just one chance to be a mother.
I am a 40 something year old, married, childless woman. I feel that that is how society sees me. Sometimes it’s how I see myself, but there’s so much more to me than that.
My life revolves around my husband and my fur babies. Rizzy lived to a grand old age of 21.5 years, Rio is 18, and our youngest Little Bugly is 10. Bugly is the most mischievous cat I have ever had the pleasure of owning, and I think that if I had her first I wouldn’t have had another kitty. Our eldest Riz was a miserable old bag and found winters difficult. We spoiled her all the way to the end. Our middle one Rio is a blue Persian/British Blue cross. She may be small but she’s blooming heavy. They are my world and I love them to the moon and back.
My husband, Ian, is my rock and has supported me through so much the last 20 years and has had to see and do things that no husband should have to do, and I am thankful for him each and every day. We met on New Year’s Eve back in 1990 at a party and were inseparable all evening. Soon after and both still teenagers we moved in together albeit living with 2 other friends.
We plodded on through life, getting engaged, buying our forever home in the Medway Towns and setting off on the trip of a lifetime through Asia in 2002 across 6 incredible months. It was the best 6 months of our lives and while in Thailand we decided it was the time to try for a family.
I came off the pill 3 months before we got married, after a pregnancy scare. We thought “well sod it, we are getting married, we have been together 12 years already, we have a house, we both worked; it was as good a time as any to try for a family.
Try was the operative word. After nearly 2 years without any luck, we went for “investigations” which resulted in “unexplained infertility” and were referred to the fertility experts to see what they could do to help us. We had no idea what lay ahead.
Before I was on the pill my periods were always heavy and I just presumed it was because my mother’s were also heavy. They became more irregular and painful too. I was swallowing paracetamol/co-codamol and ibuprofen like smarties and my hot water bottle was my new best friend. I thought it would all settle down and it was just my bodies ways of adjusting to hormones after 13 years of taking the pill.
We were told that it would be about 6-8 months before we heard from the clinic because of waiting times. After 11 months I called the clinic but they had no record of my referral on their system and to get back in touch with our referred consultant. Admin errors would become an all-too familiar part of our future. I felt that I was being blocked at every turn I took.
So many people kept telling us to forget about it, and it will happen. Easy for them to say, they had their children. Life becomes forums, friendships, clinging on to the slightest bit of hope. You’re willing to try anything, everything, no matter how crazy it sounds. For the first few years we even had a spreadsheet so we knew when the best time to try was. Safe to say, romance goes out the window and it becomes very matter of fact.
Does it affect your relationship? Of course it does. Drugs, waiting, failure. My ICSI drugs turned me into a screaming banshee and as I started to watch my friends and then others, post their long awaited balloons all to be left behind, I felt so alone.
When we finally did get an appointment with the clinic at Tunbridge Wells we met our consultant and there was a ray of hope. We were told that icsi would be our best chance of starting a family and were entitled to 2 attempts which were funded and after we would be charged for our treatment, This was amazing since we couldn’t afford private treatment.
I started medication but the first attempt was abandoned almost before it began because my follicles were very poor and not growing. I don’t remember much, but am so grateful to my supportive colleagues and line managers throughout the time. When I got home, I called my Mum and told her that it was all over, and at that minute I felt that it had. My heart broke into a million pieces and I didn’t know if I could do it again. I got into bed and sobbed and sobbed and wished that I could just disappear and not come back. I didn’t want to talk to anyone, or rather I couldn’t talk to anyone, I felt like a failure. I couldn’t even get pregnant, something that others, it seemed, was so bloody easy.
Our second attempt resulted in 4 eggs, and 2 of those fertilised and were implanted back in, we left the clinic with a scan of 2 embryos. We kept the scan picture on the mantle piece in pride of place. We named the embryos Benson and Hedges and told my mother in law that “if” it worked this is what they would be called. We told her we were also thinking of Champagne and Burberry. She wasn’t impressed. Those 2 weeks took forever.
Unfortunately 2 weeks later I did not have to take a test to find out if I was pregnant or not. By now my periods were horrendous. I was in agony, surviving on painkillers to get me through. Again I felt like a failure. I was to endure years of being dismissed over my periods, despite collapsing, missing days from work, needing an ambulance to take me to A&E. I was sent all over the place for all different blood tests, scans, x-rays, barium meals, and colonoscopies and no one seemed to know what was wrong. Making me feel that maybe I was over reacting, maybe everyone’s periods were like this, maybe I should man up and get on with it.
After a while there were some redundancies being announced where I was working and it seemed like time for a change. I started to temp and was placed all over, I didn’t want to commit myself to a full time job yet, I wanted to just blend in. It was a snowy day in December 2009 when I struggled to work, once again in agony. By the time I got home, I knew I had to go to A&E again. It was the start of a 6 month nightmare, involving surgeries, lack of support, feeling dismissed.
My first operation came on 23rd December 2009, a spectroscopy. But after 6 months of frustration, it would be May 2010 before I finally felt listened to and I was no further forward. I was sent for an MRI but no-one was able to share the results and I spent a weekend in hospital, waiting to see what Monday would bring. It wasn’t good news – I was confronted by a registrar telling me I was to get ready for surgery and that they were going to be performing a hysterectomy. I was floored, hysterical. I asked why as I hadn’t even been told what’s wrong. He told me to make my mind up as to whether I wanted the operation or continue in pain. Ian was at the hospital within an hour demanding to speak to someone, and that he would be making a complaint. It’s amazing what happens when you mention the word “complaint”. We had a meeting with the Sister, who was wonderful it was just a shame she wasn’t there over the weekend to have helped though. I was made comfortable as we waited to see the consultant.
And finally. The news we heard (or rather I didn’t cos I was so high on pethidine I couldn’t string 2 words together) that I had a huge mass on the left hand side which they believed to be Endometriosis but wouldn’t know until they got in and had a look, and that I was to be on the list the next day for a laparoscopy.
I hadn’t even heard of Endometriosis. When I got back to my bed, the ylady in the bed next to me, Emma, asked if I was OK. I explained the best I could. She also had Endometriosis and that was why she was there. It was fantastictoI hear that someone knew what this Endometriosis was and what it meant. We spent many a night on that bench outside A & E.
By the time the Consultant arrived I was a mess. The Endo was so extensive that the laparoscopy was and I was opened up from my pubic bone to an inch to the right of my belly button. He removed my left ovary and fallopian tube which had been strangled by adhesions, and had to resect my bowel. He also lasered all that he could see. I was devastated, I felt I had lost half my chances of falling pregnant.
It helped temporarily but the pain returned. I rang the Consultant’s Secretary and asked for an appointment to see him as my pain was unbearable. I didn’t recognise myself anymore. Weight gain, skin discolouration, hair loss. My life consisted of going to work, coming home, hot bath, hot water bottle, lots of drugs and my bed. The only time I saw Ian was when he drove me to and from work.
The consultant put me on Danazol which put my body into chemical menopause to see if over 6 months it gave me any relief.
In April 2010 we received a letter from the clinic to advise us that the PCT had decided we were entitled to a 3rd round of treatment. I felt I wasn’t able to either mentally or physically go through another round of treatment so we abandoned the idea. Eventually though after much talk, we decided the pros outweighed the cons and we discussed it with the consultant. He advised it was the right time if we wanted to go ahead but the icsi treatment would exacerbate the Endometriosis. I would probably need a hysterectomy sooner than expected as a result.
No matter what happened, I knew we had to try. A chance, no matter how slim, was a chance.
I started the pill to get my cycle in tune with the treatment and then the scans and drugs started. I managed to produce 2 “adequate” follicles which were retrieved, Ian did his bit and then we waited.
One had fertilised, it was better than none. It was considered a good embryo so I went in the following day for implantation. Again, the familiar two week wait. We waited. But once more, the familiar knowledge of not needing to do a test. I knew. I had been spotting since implantation and started to bleed a day before the 14 day wait. I called the clinic and told them, they said to wait a few days and do another test, but I just knew and didn’t bother.
Reality for me now was truly awful. I didn’t have a life and was missing so much. I barely remember my brother getting married. I didn’t care about anything. I was missing days at work, and when I was there I was my own personal health and safety risk because of the medication. I still don’t know how I got through it.
We had an appointment to see my GYNAE Consultant on 12 September 2011 where I decided I had had enough. I told him I was ready for a hysterectomy. His response was “Good, I am glad you made the decision, because that is was I was going to recommend”. So at 4.38pm on 12th September 2011 I signed away my womb and the only chance I would have of having a child of my own.
With an up to 12 week wait time, my only option was to continue with pain medication and resorted to a facet joint injection for my hips. Before the appointment I went to see my friend Emma who had just had another op, but she was surprisingly sprightly for someone who had had surgery the day before and I demanded she show me the holes. We sat on the hospital benches chatting and smoking, something you shouldn’t do before having sedation. When I came round, it felt like I was walking on air, after months of horrendous back pain, not to mention the hip and thigh pain I was finally having some relief.
Pratically, I prepared as best I could. My case was packed. I cooked up a storm for the freezer and tried to get as much work done as possible. Emotionally though it was an entirely different story. I kept having panic attacks and was smoking far more than was good for me, and trying to block out the pain with as much medication as I could without overdosing. I was wearing a TENS machine 18-20 hours a day, with the only time it being off was in the bath. I also had a Ladies Menopause magnet that I found on the net, which you inserted in your knickers at the pubic area and it does something or other. I was trying anything to help, and also wishing that there was just a chance, a possibility, that I could get pregnant and seemed to want to make love more than I had ever in the last 10 years. I knew it would hurt like hell during and after, but I felt I had to cling on to him as much as I could as hard as I could, for fear of falling.
I finally heard from the clinic, with a potential appointment for 30th December. I knew what the end result would be, so final, but I felt a sense of relief at a future without pain. I was very depressed and had been for a good few years now, and felt like I was sinking further. I kept trying to pull myself up, but kept slipping down again.
I got as ready for Christmas as I could. Ian always did the pressie and food shopping while I was at work, and I did the wrapping. This year obviously was different and we put only the effort in we had to.
We’d originally planned Christmas with Ian’s parents but at the last minute my brother Shane came down from Huddersfield with his wife so our plans changed and we had Christmas with my family. Again I don’t remember much as I was on so much medication by this point. I went back to work between the Christmas and New Year on the 28th, to make sure that everything was ready and tie up the last bits and pieces. I spent the 29th making sure I had everything ready at home.
On the morning of the 30th December I got up super early to have my last cup of tea, I had been nil by mouth since midnight and could have murdered a biscuit with it. I sat in the garden in the freezing cold with my tea and a ciggie and watched the sun (or cloud) come up. I felt like I was losing more than just my womb, I was losing everything. I’d been mourning for years a future I’d never have, and have been mourning since. This was my story and hopefully life goes on.
Thank you so so much to Tasha for sharing her honest story as a guest poster and sharing her thoughts and views in this piece. As I’ve stressed from the very beginning, this is a warm, empathic platform for people to share their stories, hopes, dreams, fears. Please do read Tasha’s story, leave a comment if you’d like to and share this series if you know anyone it could help. Together we are making changes.