Endometriosis Awareness – Elysha’s Story

March 20, 2018

Our third and final segment in our Mini series for Endometriosis Awareness we spoke to Elysha. Below is her journey on living with Endometriosis.

Endometriosis is a debilitating condition affects 1 in 10 women, including myself. Endometriosis is when the cells like the ones in the uterus, are found elsewhere in the body. Each month, these cells react in the same way to those in the womb, building up and then breaking down and bleeding. Unlike the cells in the womb that leave the body as a period, this blood has no way to escape. My journey with Endometriosis began after my diagnosis and my life has never been the same.

As a teenager I never had any issues with my menstruation, except for sometimes bleeding a little heavier, but nothing out of the ordinary. At the age of 19 I was put on Microgynon, a contraception pill, to control the severity of my acne. After marriage, my husband and I didn’t want to have kids until later; so staying on the pill was the best option. The only thing I recall was odd was that I was fatigued very often, anaemic, underweight and had chronic backaches. My GPs never raised a red flag, so I didn’t think anything of it. The first signs and symptoms I started to experience, was around the age of 27. I recall having bouts of nausea; bloating and sudden severe back aches. Once, during my periods, I was on my way to work and as I sat on the train, I felt the urge to pee, I started to sweat and almost felt like passing out as I could feel a sharp stabbing pain in my bladder, I felt so week and nauseated. I had to get off the train and seek help from a staff member, who rushed me to the toilet. However, these kinds of incidents started to occur frequently, even when I wasn’t on my period. My period pain slowly became severe and I was finding it hard to cope. I decided to talk to my GP about this, but I was told it was ‘just my age’, and that period pain was ‘normal for every woman’! I later decided to come off the pill and try to get pregnant, however, it only made my period pain come back with a vengeance, the pain was so bad that I would just curl up in bed all day, other things like opening my bowels, and intercourse started to become painful. I started to notice at this time that my stomach began to get distended all the time and I started to suffer from everyday back pains. I was put on strong painkillers and told to go back on the pill by my GP.

‘taken by my hubby to capture my state during my periods 4-5 days in row I would remain in bed. Here I have a tens machine and a variety of strong painkillers next to me and laxatives’

In September 2014, I had gone back home to Kenya to visit my parents. It was the first day of my period, and could already feel the nausea and pains beginning, I stayed in bed all day, and by evening the pain was so bad I couldn’t even move from the bed, this was by far the worst pain I have ever experienced in my life. I was writhing in pain and screaming so loud, that my parents came running upstairs to check on me, both were confused and rattled. My mum massaged my stomach to try calm my pain, but it just got worse after every few minutes. My body felt like it was on fire, my uterus and organs felt like they were being squeezed so hard and stabbed with something sharp, my ovaries were aching and felt like they were about to burst! Every time I needed to use the loo, I would pass out from the pain of needing to pee or open my bowels. At this point I was sweating so much and feeling faint, I kept throwing up and couldn’t keep food down. There was a horrible pain in my coccyx (tailbone) like someone took a hot poker and prodded me with it multiple times, at the same time I was having severe contractions and all I could do was cry and scream in this unimaginable pain. Finally, a doctor was able to provide me with temporary relief, until I could go in to see him in hospital, and finally my pain calmed. During a scan, all that could be seen was a cyst but the GP was perplexed as to how this could cause so much pain. My gynaecologist recommended stopping my periods for a while, as there was no point in being in pain. It was the first time I was introduced to Zoladex (a hormone therapy that is used in women with Endometriosis, it puts you into temporary menopause, it is also an alternative chemotherapy drug, used for cancer patients). I found relief from my pain, but the side effects of temporary menopause were: insomnia, hot flushes, sweating, mood swings and headaches. Not to mention how traumatizing it was to the abdomen, which ended up bruised and painful.

‘How my abdomen looked after Zoladex every month sore to touch for days’

After returning to the UK, I sought a gynaecologist that could help me further. She confirmed via an MRI and from my symptoms that it was Endometriosis, and she put me on another hormone treatment called Prostap (Lupron). We proceeded to surgery. At this point, I still thought that Endometriosis was recurring cysts and curable. After surgery I was in a lot of pain, the nurses said it was odd since I only had a cyst drained. The gynaecologist told me that she could not see my organs, so I would have to be referred to an endometriosis centre. I still didn’t understand, and could do nothing else but cry, from the pain and confusion. A week post-op and I felt depressed, had suicidal thoughts and a constant ache in all my limbs; I also started to bleed massive clots, the size of my palm! I panicked and was rushed to A&E, but nothing was seen. I was later informed that my side effects were due to the drug Prostap – this lasted for 3 months and even long after; I still suffered from aching limbs and anxiety! I was so annoyed that my gynaecologist neglected to inform me before hand about this drug. My body looked so battered and I had gained so much weight in such little time from this drug, I felt like I was looking at another person in the mirror.

Desperate for answers, and battling depression, I went to speak to my GP about support, but she just shrugged it off and sent me on my way. I decided it was time I stopped being ignorant and started to research this condition. I was heartbroken to read what Endometriosis really was; No cure, affects every 1 in 10 women, goes undiagnosed for years, misdiagnoses, multiple surgeries & irreversible affects of GNRH injections, I remember crying and feeling so hopeless. However, not long after I found the Endometriosis UK charity, I joined forums and started to attend the group meetings. In no time, I had learned so much about this condition and what the best treatment was for pain management. I also got to talk to so many women who suffered just like me and suddenly I didn’t feel so alone. Knowledge after all is power! And this was how I found and chose the right surgeon for myself.

‘Side effects of my injections and the progesterone pill, loss of hair everyday and painful cystic acne on face and back and weight gain’

My current surgeon is brilliant and from the minute I had my consultation, he encouraged me to be more educated on Endometriosis, and always welcomed all my questions. I had to remain on Zoladex and Cerazette (progesterone pill) to suppress the Endometriosis, and by this point I had already been on it for year. The maximum amount of time recommended for this drug is 6 months, but without it I could barely function. During my laparoscopy (a surgical procedure in which a fibre-optic instrument is inserted through the abdominal wall to view the organs in the abdomen), my Doctor found all my organs were fused together, my bowels and uterus was one, my ovaries and tubes, were buried in adhesions (fibrous bands that form between tissues and organs). I had vaginal and rectal nodules, and at this time he also confirmed that I had Interstitial Cystitis (also known as painful bladder syndrome). I was diagnosed with ‘severe stage 4 Endometriosis’. The next course of action was excision surgery. The Doctor warned that I will need a bowel resection as the disease had infiltrated my bowels, and that I might need a stoma bag, he also said that due to the extent of my disease, there was a possibility that I might lose my fallopian tubes. When I heard this, my world came crashing down. I did not want to think that on top of all the pain and struggle, I would then have to cope with infertility. But this time around I felt stronger, I had a great surgeon by my side, and a wealth of information available to me. I was also part of all the decisions regarding my surgery, and it gave me a sense of safety and trust in my surgeon. I was not afraid at all, but rather ready to take this on. My body was changing so much – I was constantly battling pain, severe acne, brain fog, painful bloating (‘endo belly’) fatigue, hair loss, depression, joint pain and menopause, at the age of 31, and by this time my clothes size had doubled, which was the hardest thing for me to see, I was always complimented for my figure and I felt that Endometriosis was slowly taking away everything good in my life. I also lost a lot of friends during this time, as I could not be a social person anymore.

‘my laparoscopy scars, distended belly due to endometriosis and gas in stomach’

My excision surgery was performed in October 2016; I had an almost 7-hour procedure to unstick my organs, and had a bowel resection, I also had two cysts drained the biggest being 6cm. I awoke in ICU with the good news from my Doctor, that he had saved my tubes, and they were working fine, which meant I could try to conceive. And thanks to the colorectal surgeon, my bowel resection was minor and I didn’t need a stoma bag! By the second day I was up and about with my physiotherapist with the only mild soreness. What a difference from my first surgery!

Over a year later and I’m still on the road to recovery, I’m able to do a lot now that I wasn’t before and I never take my body for granted. I eat well and try to do yoga, however I still suffer from severe bowel issues, for which I’m seeing specialists. Some days can be hard for me as I have a constant ‘endo belly’ (painful bloating), and I also suffer from severe fatigue and brain fog. Perhaps if I had listened to my body and pushed for an answer, my Endometriosis wouldn’t have been so severe, but I also blame the lack of information and support from our GPs and gynaecologists. The difference between my first gynaecologist and second was a huge. We need supportive and encouraging specialists to listen and help us.

The current waiting time for a diagnosis for endometriosis is 7.5 years! Often women’s symptoms get misdiagnosed as IBS or PID. If you are not able to function due to pains during or after periods, then see your doctor immediately, and don’t let any doctor shrug off your symptoms. We should normalise period talk, so that when young girls tell us their pain is unbearable, we are able to help them sooner. Endometriosis cannot be cured by a hysterectomy or by pregnancy. The ONLY gold standard treatment for managing Endometriosis is excision surgery (cutting away the disease) not Laser or ablation (which was performed on me by the first gynaecologist). A skilled specialist should be sought, who is able to excise the disease and the surgeon should feel happy to give you choices and allow you to be part of the surgery plan.

‘my surgeon and I taken 4 weeks post op!’

Throughout this hardship, I have found great comfort in connecting with women around the world who suffer just like I do. My family is my greatest support, we need our loved ones and friends not only to understand our pain but also be educated on the condition. The hardest thing for me was acceptance, and breaking culture barriers, and it wasn’t until recently that I found myself comfortable to talk about it. I was in denial for a long time about something being wrong. It is nothing to be ashamed of, and Endometriosis is a disease that affects not just our reproductive system, but also our organs.

I understand how isolated it feels to be in pain everyday and suffer but we shouldn’t suffer in silence, if we speak up, we can raise awareness. This condition not only affects your body, but it affects careers and relationships. I urge others to be sympathetic of other women’s period pains and encourage them to investigate their health issues. To help with these issues raise awareness, you can share posters or donate to the Endometriosis charities. My hope is to be able to reach out to more women and raise awareness, especially in my home town in Kenya.