We love the brave women who are kind enough to share there stories with us, but we also care about privacy, so we’ve changed the name of our endowarrior to protect her privacy.
Background
Hannah* is a freelance opera singer, teacher and mum of two living in the South of England. She was diagnosed nine years ago and kindly agreed to be interviewed by Uprisen about her endometriosis and is impact on her life.
Hannah, thank you so much for taking to talking to me today and sharing your story. We know that endometriosis is not a ‘one-size-fits-all’ condition and that symptoms and severity of the condition can vary from person to person, but the pervasive thread that seems to tie most patients together is their difficulty achieving diagnosis and the less than sufficient treatment from certain physicians. Can you tell us about how your condition first presented and what your experience was with medical professionals when seeking diagnosis?
Of course! No problem. I had horrendous experiences with doctors and I’m more than happy to talk about this and hopefully help future patients to avoid similar experiences in the future.
I first suffered from a cystitis-like pain in January 2011 and initially, I thought nothing of it; it’s just one of those things that afflicts women from time to time, right? When the same pain returned every few weeks for about three months, and I had exhausted all of the cystitis medication to no positive effect, I went to see a GP for help. The pain had started to negatively affect my studies (I was a postgraduate student at the Royal Academy of Music at the type, just about to finish my Masters and start the Opera school course later that year) so I needed help, and fast.
Unfortunately, I ended up seeing Dr Misogynist who didn’t believe me about my pain, and who blamed my then boyfriend (now husband), claiming that it must be an STD and that we should both get checked.
So, we were both checked and were both healthy so it was back to square one.
I saw another GP for a second opinion and had pretty much the same answer“It’s just women’s problems and it’ll go in time. You’re probably just exaggerating things and it’ll be fine.”
That’s horrendous! What affect do you think these experiences were having on your quality of life?
It was awful, I started to imagine that I was going mad! Was I crazy? Was I making things up? This pain was becoming more and more frequent and it was starting to affect all aspects of my life.
One horrible memory I have is of going to see a play in the West End with a friend and I was so uncomfortable in my seat, desperate for the loo but not able to go, and in so much pain, that I spent the second half knelt in the very upper corridor above the balcony seats, away from my friend, gently rocking myself and taking ibuprofen (or was it diclofenac by then?) which were becoming like sweets to me.
My education was also starting to suffer and so I applied to defer the final recital assessment for my Masters. It was becoming embarrassing to even leave the house. I would fill up a hot water bottle to put down the front of my jeans, leave twice as long to walk to the train station than I would normally need to allow time to sit on the wall a few times along the way if necessary, and would grit my teeth to climb up and over the small footbridge to get to the platform I needed. Once on the train, it was a Catch 22 situation; if I was able to get a seat, I would sit reasonably comfortably until it came to my stop when I would often feel unable to stand up again to leave the train; occasionally, I almost missed my stop because of difficulty in regaining a standing position to walk. If I was unable to get a seat, I’d grit my teeth for the entire journey in pain but, if I stayed near the exit doors, at least I didn’t need to worry about going from sitting to standing to leave the train. Then I had to brave the underground and walk from Regent’s Park station to RAM. Close to crawling up the stairs to my teacher’s lesson, I’d then attempt some warm-ups only to be told to go back home again.
Simple things which I’d taken for granted mere months before were becoming almost impossible. Luckily, my fellow students, acting tutor, vocal coach, and singing teacher were all very supportive and did what they could to help me, whether that meant providing a shoulder to cry on or being flexible by rescheduling sessions which had to be cancelled.
How did you manage find the help you needed after being rejected by GPs on numerous occasions?
Well, my singing teacher was the first person to introduce me to the word ‘Endometriosis’; she had suffered with it when she was younger and suggested that I might have it myself. However, having read about the condition and being told that it was very hard to diagnose and that the symptoms were wide-ranging, I didn’t fully accept that it could be the reason for my pain.
During the May half-term break, I went on holiday with my then boyfriend and a bunch of friends which was an absolute disaster; most days were spent with me having to stay in bed while they all went off to the beach or on a walk. The house we were staying at was very remote, I didn’t have any mobile phone reception and was panicked to think that I couldn’t contact anyone in an emergency.
I was a tough, independent person but I was brought to tears at the unfairness and hopelessness of it all. Even getting down the stairs to make myself a meal was impossible sometimes. I didn’t want to believe that this would be my life, forever left behind when everyone else my age was off having fun. I refused to rely on others for basic care but I saw no way out.
Everything changed direction when, after a particularly bad flare up of this mystery condition and three consecutive nights of no sleep, my boyfriend took me to A&E where the doctors ruled out several possibilities (appendicitis, pregnancy, ovarian cysts, etc.), and I was told that my GP would be contacted immediately to refer me to a Gynaecologist for scans.
Around this time, I had found a new GP (the fourth I’d seen) who was excellent and who actually listened to me and believed my story. She started by solving some of my subsidiary symptoms, such as skin problems, asked me to tri-cycle my pill so that it would decrease the amount of menstrual blood loss, and encouraged me to keep a detailed diary documenting symptoms, painkillers I’d taken and my diet. I compared it to my menstrual cycle, desperately searching for patterns but finding no correlations.
The uncomfortable and evasive scans showed nothing. However, the diary that I’d kept plus the letter from the A&E doctors made a strong case for a laparoscopy. The scans were carried out in June and the soonest that the operation could happen would be in six months’ time.
I began the opera school course in September and began work on a short opera by Vaughan Williams called ‘Riders to the sea’. The stage director was absolutely brilliant and tirelessly supportive, making sure that I was comfortable and modifying some of the blocking to allow me to sit/kneel where necessary. I managed to get through the academic term on a cocktail of painkilling drugs and sheer suborn determination, spurred on by seeing light at the end of the tunnel.
On 13th December, my laparoscopy took place and sure enough, large deposits of endometrium were found wrapped around both fallopian tubes and collecting behind my cervix. All of it was zapped out using electricity and I was home that evening, sore but relieved. As soon as I had opened my eyes after the laparoscopy, I knew that the pain I had been experiencing was gone and all that remained was tiredness from the general anaesthetic. I can’t explain how I felt but I just knew it was all over.
Unfortunately, I tried to bounce back into my singing career and training way too soon in the January term, trying to make up for lost time, and I ended up damaging my vocal cords which meant having to take another few months off. All those months singing on an injured body meant that I had to rehabilitate my voice slowly and rebuild my muscular support. During this time, I had singing lessons but sang in no live performances which meant missing out on several opportunities including sining a dream role of mine, First Lady in Die Zauberlöte. I clawed myself back for the Easter term opera production but my voice was still weak and I struggled to sing well. Only a performer knows the heartache of singing under-par and knowing that audiences are comparing you to your peers, putting you in last position.
Nine years on, I have had absolutely no flair-ups and the endometriosis appears to be well and truly gone, but images of those painful days are etched on my memory. I’ll never forget the kindness of friends and teachers who helped me through that horrible year and I will forever be grateful to the GP who took me seriously and gave me such wonderful advice.
It’s a shame it took you four tries and the year from hell to actually be listened to and get the help you needed. What would receiving an earlier diagnosis have meant to you?
I know how bad the diagnosis time statistics are for endometriosis, so compared to most, the thirteen months it took to receive mine is absolutely nothing. But at the time it seemed like an eternity, and the repercussions of my illness lasted for a long time afterwards, especially with missed singing opportunities and friendships which slowly disappeared.
If I’d had a more immediate diagnosis in the first place, for instance being referred to a gynaecologist by the first GP that I saw, I would have been able to bounce back into my normal life so much more quickly and my singing training would have been less interrupted, causing me less distress and embarrassment. My CV could have been very different had I been able to sing the roles and attended the auditions which were offered to me, but I guess I’ll never know the full impact of the condition on my life.
Since your operation, have you suffered more flare-ups? How have you learned to manage your condition and what advice would you give to others experiencing similar problems?
Fortunately, post-surgery I have no remaining symptoms, which is amazing because I know that is not the case for everyone. My my general advice to others suffering from endometriosis would be to keep a diary of evidence to provide a timeline and factual information to show the medical professionals. If you are unsatisfied with the guidance given by a GP, don’t be afraid to seek a second (or third, or fourth!) opinion.
Although dietary changes did not impact my endometriosis symptoms, some people find that certain foods can ease the pain so I would recommend looking into endometriosis diets in case they are helpful to you.
The telephone helpline provided by the charity Endometriosis UK is an excellent resource which I used a few times when I was first looking for answers.
Like most difficulties in life, you really do learn that what doesn’t kill you makes you stronger, and I truly learned who my friends are through this whole ordeal. My husband was with me through everything and it made our relationship stronger. Luckily, the condition did not compromise our fertility and we have since had two amazing children.
Most importantly, be honest with friends and family about how you feel and what you need so that they can help you. You can survive this and we must spread the word to make endometriosis more widely recognised.
