Rachael's Story

My problems began in my early twenties with very bad, heavy periods that I assumed were ‘normal women’s problems’. Days would become more and more difficult. In 1996 I was sent home from a work team week-away event due to suspected food poisoning. This continually happened. I was often curled up on the sofa in pain with a hot water bottle and would occasionally pass out on the train. I always managed to drag myself into work but the commute was a struggle. Then at the Christmas party in 1997 I passed out. My partner at the time wanted me to go to hospital but I said I would wait and see my GP. On the following Monday my GP examined me and said straightaway that she suspected endometriosis. I did not have a clue at that time what this was or meant. Fortunately I had private health cover with my job so I didn’t need to wait long to see a gynaecologist, and be booked in for a laparoscopy. This all sounded very scary at this time.

Endometriosis was found behind my womb and Pouch of Douglas. I returned to work two weeks later, and thought at that time it would be a one off operation. I came off the contraceptive pill and at first I had no pain and my cycles appeared fairly regular, but then I started having a very heavy period every two weeks, so I was taken in for another laparoscopy in October 1999.

During the next year 2000/01 I felt much stronger, then in late 2001 I felt so tired and washed out; I would come home from work and go straight to bed, and would have blackouts on the tube. I had blood tests but the results were negative, so I was signed off work for a week as my GP felt I needed time out to rest. I also saw my gynaecologist as I was not entirely convinced. I was having considerable pain with my periods, and problems with dizziness and tiredness. He prescribed me with the Cilest contraceptive pill. I was finding work such a struggle – I just felt like I had been drugged most days. After one month I returned to my gynaecologist as the pain was becoming unbearable. He said I was tender over my right ovary and arranged an ultrasound, hystercopy and laparoscopy. The results of the ultrasound suggested a nodule inside my bladder compatible with endometriosis. My consultant said he would also perform a cystoscopy when I had surgery the following week.

After surgery I was very tired and sore. I had a lower lesion on the left portion of the bladder, which was biopsied and I was awaiting the results. Again, endometriosis was found in the Pouch of Douglas. Not only was I tired and in pain from the operation, but I was very stressed out and worried about the results of my biopsy.

I returned for my results ten days later, and my consultant informed me I had a bladder tumour. I remember feeling really scared, it was very surreal, like an out of body experience. My Mother was called to the room, and she took the news far worse than me. I remember people asking me how I felt about the news. I didn’t’ know how I felt. I just wanted time on my own, not to be reminded.

I had surgery for the tumour and took three months out. I was very stressed and my energy levels had dropped considerably. I felt mentally and emotionally drained. From a financial perspective it was tough; I was only 27 and owned my own property, but I was not receiving sick pay from work other than statutory sick pay as I was contracting. Fortunately I had mortgage protection but no further money to cover utility bills and to live. I felt as if everything was crumbling.

I managed to secure a contractual role in London in August 2002, but the pain got bad again later that year and I was having blackouts. I had a laparoscopy in December and was due yet another cystocopy in January. I managed to return to work after three weeks. I really do not know how I was coping - I think I was depressed but would not admit defeat, so I would often drink too much and get angry. I felt I had to blame everyone.

Years followed; 2004, 2005, 2006 and 2007, with more laparoscopies to treat endometriosis. I also had to cope with the stress of the repeat flexible cystoscopy to check for any signs of a return of bladder tumour. Due to my sickness I often lost my contracts, even though on good days I would be in work early and work through lunch and be very dedicated. I really do not know how I managed to keep myself in my own property. I existed and felt very stressed. I felt I had been given a bad card.

I decided to rent my property out in May 2007. The pressure of debt was becoming too much with my illness, so I gave in and moved back with my parents, which was tough after living in my own property since I was 25, but I am sure I really needed the TLC! I remained very tired and felt very depressed due to the continued return of endometriosis, and losing my job/career. I felt I had lost my purpose. I was prescribed Prozac by my GP. I started drinking fairly heavily and becoming very defensive, like nobody understood. How could they? They didn’t have it, and didn’t know the suffering I’d been through.

I tried to work that year - I was trying to prove to myself that I was the same as I once was. I was offered a permanent position but only managed to stay for four months as the commute to London, getting up at 6am and home between 7/8pm was leaving me run down. Some days I was in so much pain that I could not get out of bed. My employer said I was having a ‘duvet day’, maybe partly my fault for not disclosing all health problems at the start. I resigned due to this - I knew I was not well enough. I was taken in for another laparoscopy in November 2007.

This all put pressure on relationships; the partner I had at the time could not cope and treated my illness as if I had a common cold. I tried to seek financial help as a form of incapacity benefit but only received some benefit for a short time. So I had no form of income and did not feel strong enough to work. To be honest, I had worked pretty much constantly since 1994 - it was not a case of me not wanting to work; my body could not. I felt like a rag doll and hardly had the energy to do things for myself.

I worked for three months in London again from August 2009, but during that time still remained tired and had endometriosis flare-ups. I had yet another laparoscopy early this year, and now have been fitted with the Mirena coil. I only wish that this will keep the endometriosis at bay, even if just for a couple of years to give my body a break from surgery. I have considered a hysterectomy, I am 35, and to be honest, feel like my life is ‘stop-start’. I can never plan things.

I am fundraising for endometriosis, and have raised over £1,000. I did the London 10k Asics run and by doing this I have become more aware of the Endometriosis UK charity; using their Facebook page, becoming a member, and talking to other women like me with the same problems. I do not feel so alone battling with this chronic condition. I will continue to fundraise for endometriosis - I feel it is time that more awareness is raised and that women like myself receive support emotionally and financially. I really feel if you have had surgery for endometriosis a certain amount of times it should be a recognised as a disability. I have had to contract between jobs most recently, which is such a shame as I do enjoy my career. It’s not my dedication and ability but my health, and I feel that potential employers often discriminate against you due to job changes and health reasons.

So please do not let us ladies out here suffer in silence, I want people to be more aware of this painful condition and not think it is just women’s problems! Thanks for taking the time out to read my story I will continue with my fight with this chronic condition, maybe one day I will move back to my own apartment, have children and get my career back. I really do hope it is not just a distant dream.

Rachael xx

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