Coping with endometriosis and infertility

I never remember a time when I didn’t want to become a Mum. Duncan and I married in 2001, I was 24 (he was 30), we both had an image of what our future life would be. Not so much the house and material things, but we both wanted to have children.. Looking back on this time we seemed so full of life and so excited about our future together and the family we would have. As I write this article I am 7 weeks post total abdominal hysterectomy, bilateral salpingoophorectomy and my bowel was also resected.  It was my choice to have this operation I hope by reading my story you will understand why I made the ultimate sacrifice to get some control back in my life.

I started my periods before my 10th birthday. I was very young and suffered excruciating pain and high levels of blood loss, by 15  I had begun taking one of many contraceptive pills.  At 21 (1997) I experienced my first miscarriage – at the time I was relieved, I had no idea that this was to be a huge part of my life story.

We have experienced 6 miscarriages since 2004,  I am defined as a sufferer of recurrent miscarriage.  It seems simple when it is written in a sentence but the journey we have found ourselves on has been difficult, never ending and so isolating.

My monthly periods were erratic, unpredictable and increasingly painful.  Symptoms were classic for an endometriosis sufferer, but until 2006 I had never heard of this condition. The times I was told my symptoms were in my head, or that this was what happened with periods and I just had to get on with it. Doctors would look at me in disbelief if I told them I had been bleeding for 16 days (which happened monthly, towards the end I bled for 23 days).

The only pregnancy we tried for was in 2006, by this stage we were under a fertility specialist as we had failed to fall pregnant easily; mainly due to the fact that I bled so much and so often that the opportunities for conception were few and far between. Loosing this baby was by far the hardest; we were so excited and full of hope for the future.  The previous losses we had attributed to bad luck, but by now we realised that there must be something physically wrong with my body.  We discovered I was pregnant on the Monday morning, but by that evening I was in excruciating period type pain. The following day I started bleeding and by the Friday I had miscarried. Ten days later I got septicaemia and was rushed to hospital with a raging temperature and what felt like the worst case of flu.  My body hadn’t shed itself of all the pregnancy tissue and was making me ill.  I had to stay in hospital for the evening and be pumped full of penicillin, on my return home I didn’t leave my bed for 5 days.

Each loss has been physically different, 2 miscarries were ‘missed’ and only diagnosed as I suffered after each one with septicaemia (have had this 4 times in all). During one miscarriage I suffered such painful and intense contractions that I injured my back.  We were never given any information about what to expect when miscarrying, I now know that it takes 6-8 weeks for the pregnancy hormones to leave your body, I know this because of the morning sickness and raging hormones that I was left with as a cruel reminder that tricked me in to thinking maybe I was still pregnant after all.  I am embarrassed to say how many times I have taken a pregnancy test knowing that it would be negative but praying that it would be positive.

Knowing we could get pregnant was surely an advantage I read somewhere that miscarriage is a sign of fertility? Fertility surely means you can carry a pregnancy full term. I am infertile as my body is unable to do fulfil this function.

It is easy to lose track of how many medications and tests I have had in the last 7 years.  We have endured referrals and re referrals to fertility clinics and gynaecologists. I have begged for help and at times been so desperate for help because of the pain I just didn’t know how I would be able to get out of bed and function the next day. Trying Norethisterone, Mirena Coil, countless contraceptive pills, transamenic acid and Mefenamic acid.  Finally being offered Zoladex in December 2009 following two laparoscopies and a confirmed diagnosis of stage 4 endometriosis, they were unable to see my womb, ovaries or tubes.  It was not possible for them to remove any endo or see the extent of the damage to my bladder or bowel.  The consultant said it was one of the worst cases he had seen.

Initially Zoladex was offered as it would make the endo shrink enough for me to have some of the tissue removed from my fused tubes, they were optimistic that this would give us a window of 3 months to try and conceive a baby. This optimism was short lived and at our next appointment we were advised that the endo was the reason for my early recurrent miscarriages simply my hormones rejected the egg treating it as if it was endometriosis.

As I had coped well with the treatment, they wanted me to stay on it for another six months. I was offered two pathways for my future I could come off the treatment and try and live with the endo without any treatment at all, or I could opt to have a hysterectomy.

A gynaecologist in November 2010 did offer us IVF by mistake (she had not read our notes and retracted the offer once she did!), IVF was inappropriate as conception was not  a problem but my body was incapable of carrying a baby full-term.

Zoladex showed me glimpses of how life can be without endometriosis controlling me.  Opting to have a hysterectomy was not a decision that we made lightly.  But for me it was the right thing to do,  it was the best chance of having a happy healthy future. Even facing a stoma bag I knew it was a risk I needed to take. Mentally and physically I was ready to draw a line under what has been the most difficult time of our lives.  Whether I proceeded with a hysterectomy or not the facts were I was infertile.

During my Zoladex treatment I got fitter than I had ever been before, because I felt so much better than I could ever remember and I lost nearly 3 stone in weight.  Both were not easy but I knew that it would be a massive operation and that I wanted to face it in peek fitness.

I choose to get a quality of life that had never been available to me.

Duncan helped keep me sane and grounded.  At the end of 2006 we decided that we would not continue to try for our own baby. We were united in our belief that whilst my body was bleeding as much as it did there was no way my womb could ever be healthy enough for me to carry a baby, we didn’t need a consultant to tell us this. This decision was also partly to preserve our sanity. The NHS system was such that we could either pursue fertility or gyne, not both together.  Our fertility tests were clear so gyne was the only route left open to us.

I cannot begin to do justice in my description of the affect infertility and this chronic illness has had on our relationship.  Duncan is my best friend and my soul mate,  he has emotionally and physically supported me throughout.  It has not been plain sailing and at times we have both wondered whether our relationship would survive.  We have both gone through various stages at different times and had to be strong for each other. Duncan in his own words said the worse thing was he could do nothing to help me, he hated watching me in so much pain.  But him being next to me every step of the way, holding me when we miscarried, wiping my countless tears away and supporting me when I realised we were at the end of the road has enabled me to stay strong and keep functioning.

Our relationship has become stronger and fulfilling in other ways.

I often describe our childlessness as not being part of the ‘baby club’. Duncan and I are surrounded by children; at one time we couldn’t go anywhere without hearing of a pregnancy, birth or a christening.  We have both been through different stages of grief at different times and tend to avoid situations that will be hard i.e. christenings and baby showers. The announcement of pregnancies within our immediate family and friends still devastates me.  To see my twin brother become a father and introduce his son to our family really tore me apart. But neither Duncan nor I are resentful of the situation we are in.  We are incredibly happy for those who don’t have to experience what we have; we wouldn’t wish this on anyone.

Guilt has been one of the hardest things to live with, for a long time I felt guilty that I was robbing Duncan of becoming a father and our parents of becoming grandparents.

We did stop trying for our own baby and decide to embark on the adoption route after our loss in 2006; initially we had to wait a year to get over our recent loss.  The adoption unit we approached rejected us due to a conflict with my professional role. We then had to embark on the process again with a new unit.  Only this coincided with Duncan being made redundant which meant we needed to wait another year before starting the process again.

In Sept 2009 we finally were ready to start the pathway to becoming adoptive parents,  we attending meetings and had visits planned for the social workers to come and assess us.  Then I suffered another miscarriage and the extent of my illness was discovered.  We discussed at length with the adoption unit and they were very understanding – they knew the pregnancy hadn’t been planned but the findings of the surgery meant I was going to embark on extensive treatment. The unit wanted to leave a clear emotional gap between the surgery and us being okay with what was happening to us. Endometriosis was a chronic illness and they needed to know how healthy I would be in the future before an assessment of suitability could be made.

Right now I cannot say whether we will pursue this in the future.  Duncan nor I feel strong enough to face another rejection. For now we are going to just be a couple looking forward not back.

Our quest for parenthood and fighting this chronic illness did not stop us from living a life. There have been many experiences that I may not have had if we had an easy passage through parenthood.  I have got further in my career than I ever imagined, I graduate from uni this year, and I ride a motorbike. These things show that my life has not stopped because it hasn’t worked out the way I planned. Infertility has robbed us of enough as it is.

Initially it took time for us to tell our family and friends what was happening, and then when Endometriosis UK published my story on their website in January, I posted the link to my facebook page.  As I did it I was shaking and felt so nauseous. I likened the feeling to standing naked in the middle of Wembley arena. This was the best thing I have ever done, the response of support from those near and far has been incredible. Even those closest to us read it and said they had no idea how much we had been through.  I encourage everyone to write their story and share it, the impact is far greater than verbalising, and for me it has shown me how far we have come.  For us it was a real turning point. Friends and family have mostly been supportive, but infertility is a lonely pathway and many simply do not know what to say.

Attending ‘The Roses of Endometriosis’ photoshoot was a real turning point for me  Getting the opportunity to spend the day with fellow sufferers less than 2 weeks before my hysterectomy confirmed for me that I was doing the right thing.  I was saddened by many of the stories I heard and this made me decide that I wanted to become a campaigner for endometriosis, with a fellow sufferer we launched which is a site designed for others to use, any endo sister can write blogs or add sites of interest.  The daily blogs I have been keeping about my complicated surgery and recovery are being watched by far more people than I ever imagined possible.

Its early days for me post op and am experiencing emotional highs and lows, the past 7 weeks have been the hardest of my life. I need to accept that it is okay for me to still feel broody and also to learn to live with the finality of what has happened. I don’t regret my choice; even if I still suffer from endometriosis in the future I can draw a line and move on with this stage of my life.

I remember reading personal stories on the endometriosis UK website, Jodie had a hysterectomy at 29, I agreed with her sentiment that hanging on to an organ that doesn’t work is pointless.  She gave me the strength to know that it was okay to take this route.

I hope that my story will help others with their pathway through this illness and that in time to come there will be a cure for endometriosis.

yours faithfully

Endosister Liz



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Roses of Endometriosis

From the beginning right back to before my operation

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