Thank you for visiting my page and taking the time to read my story.

Who Am I?

My name is Myra, and I am 31 years old. I once used to be a healthy, very independent and active person who worked so hard to achieve my degree in Radiotherapy & Oncology. As a newly graduated radiotherapist and a newly wedded wife all in the same year, I was so excited for my future and looking forward to making many wonderful memories, both in my dream career and with my husband. However, never in a million years would I have thought that my new chapter of life with my husband would be going to the hospital pretty much every week and facing a callous time so soon. What began during our honeymoon has continued to be a shadow over my life.

My History

As some of you may know, for almost eight years, I have been struggling immensely with several health disorders, including Interstitial Cystitis/ IC (painful & hypersensitive bladder condition), Fibromyalgia, Chronic fatigue, Nervous system dis-function and debilitating chronic pelvic pain. These conditions have taken over my life completely, making it so challenging for me to work, see friends, drive, walk and engage in so many things that I love. My chronic illness constantly fluctuates without fail, making it impossible to make any plans and miss out on many things in life. I'm always fighting to overcome some of the worst insuperable symptoms that I have ever experienced. When you have an illness, you realise that it seriously affects your energy levels, and "everything" takes energy. Not just the obvious things like moving about but other stuff like digesting food, filtering sensory information, making decisions and staying positive. Most of the days, I accepted the reality of living with my illness, and I adapted to my limitations. However, at the same time, most of the days, I am grieving the person I should be. Sometimes I want to give up, but every time I see my husband's face, it makes me more vital to keep on going just for him, for his love and support. In the recent year or two, the pain has progressed to its peak where I have lost almost 90% of my mobility from waist down and cannot tolerate the pain. It has come to the point that my husband has to carry me more often than before to help me get upstairs or downstairs in my own house and get to the toilet. This is because my legs have become so weak and painful to walk with and put pressure on. I only have 30% of mobility function remaining in my right leg at the moment, and in a few years, it'll be at 0%. So I'm gradually sinking and wasting away of mind and body as the months go by.

My chronic illness does not know how ill is ill enough for me to go to the hospital to seek help because if a healthy person felt how I feel every day for just one day, they would go. No matter how bad my illness was, it got to a point where I eventually gave up going to the A&E. Most of the time, when presenting with a chronic disease, my symptoms are invalidated or mostly blamed on my diagnosis, such as IC and fibromyalgia. All doctors told me, nothing more could be done except pain management and to do meditation. It’s like I have been stamped forever with this. The doctors will always find a way to relate all my pain to the diagnosis and say, "Unfortunately, I see your frustration, but there's nothing we can do more to help but give you more painkillers and write a letter to your GP." We felt that most of the medical professionals quickly gave up on me and did not try harder to find the actual root cause of my pain just because the basic routine tests came back normal and were somewhat under the impression of “oh, she needs counselling, it's all in her head, or she needs to be referred to the psych team, to help cope with this long-term illness". Many women like me are being ignored daily, silenced and sidelined by the medical professionals trying to normalise our chronic pain. 

Our trials and tribulations

For these past eight years, my husband and I have been searching for a doctor that can help me get to the core of the issue and help me get my life back. We have seen and spoken to over a dozen different types of specialists and doctors through the NHS and privately. We even took the next step of travelling to other countries like Sri Lanka and France to consult professionals. However, not one of them could figure out the problem and give us hope. It made it even more complicated when the tests conducted by them came back "CLEAR". The search continued until the pandemic kicked in, where understandably we had a very reduced amount of support. Over the years, I have had many interventions to help cope with my pelvic pain, such as:

1. Five laparoscopies to my abdomen for investigation purposes and to remove adhesions/scar tissues from various parts of my body and cysts. (No endometriosis was seen)

2. Cystoscopy, Hydro-distention (stretching of my bladder) & Urethral dilation (4x) to help me pass urine after suffering from constant urinary retention.

3. Botox to my bladder (3x)

4. The steroid with lidocaine injection (3x) to my right groin in the nerves to help numb the neurological pain for six months to a year, but it only lasted 6-8 weeks. 

5. Lidocaine infusion intravenously (twice)

6. Hypogastric Sacral Plexus Block

Living through these procedures and treatments caused me a lot of physical and mental health struggles as the years went by. I always put in my utmost strength and faith every time I go in for a procedure and hope this will all be over soon and it's going to be a positive outcome. However, I always ended up back to square one very often. Hearing the same negative news repeatedly every year by the medical professionals started to affect me mentally. It's hard to wait around for something you know might never happen, but it's even harder to give up when it's everything you want.

When I started to see the light

Things worsened for me during the pandemic year of 2021, and I couldn’t bear the pain anymore, so I decided to do my research. As much as social media can sometimes be our enemy, it can also prove to be our saviour. I managed to get in touch with someone whom I had no relationship with via Instagram, who has been in a similar situation as me for several years and was recovering from her surgery. She was so kind and gave me the names of the doctors she sought help from. I managed to get an appointment with Dr Peter-Barton Smith in London. Dr Peter-Barton Smith was so professional and understanding. After an hour-long consultation, he was instantly able to figure out what could be the root cause of all the pain and the reasons behind it, and for the first time in years, we both walked out of the appointment with hope in our hearts. However, due to the complexity of my illness, he advised us and referred me to see Professor. Marc Possover.

Prof.Possover is the President of the International Society of Neuropelveology. He is known worldwide, as the pioneer of minimally invasive surgical techniques for treating pelvic gynaecological tumours and deep infiltrating endometriosis and the world’s leading expert in treating pelvic nerve disease. Currently residing in Zurich, Switzerland.

We flew to Switzerland in February 2022 after many cancellations due to COVID restrictions to consult with him. He was so caring and took the time to understand my symptoms. He showed compassion and made me feel that I was finally being listened to without being rushed after so many years. After a nearly long two hour consultation, he diagnosed me with decompression of the sacral plexus nerve of S1 to S4 on the right side followed by isolated endometriosis of the right sciatica nerve and a lesion of the right genito-femoral nerve, which may be, a very rare nerve tumour such as endometriosis, teratoma and schwannoma. There are also adhesions involved within those areas.

Endometriosis is a chronic condition affecting 1.5 million UK women. It causes severe pain and seriously impacts the quality of life, yet there is no known cause or cure.  It takes on average seven years to diagnose, with over 68% of women initially misdiagnosed. Sciatic endometriosis is a condition where tissue resembling the lining of the uterus grows around the sciatic nerve, this can aggressively cause damage over time. It will start to attack the nerve itself and sooner or later it will cause neurological impairment.

The specific type of endometriosis that I have been diagnosed with is so rare that it's only been seen in about 500 people globally. Only one person has successfully operated in this area: Prof Marc Possover. Due to where the surgery needs to take place, there are increased risks that come with the surgery. The surgeon would need to be highly skilled and experienced in this region to undertake such an operation.

This leaves me with no choice but to have this surgery done in Switzerland by Prof Possover. I was told that, should I not do this surgery, the use of my legs will slowly start to deteriorate and eventually come to 0% functional and be bedridden.

I did try to summarise, but it's hard to put eight years of struggle into such small paragraphs. The surgery is estimated to cost about £26,000-£30,000 depending on how long the surgery takes etc. Whilst I am trying with my husband (Doing 3 Jobs) to gather as much money as possible to do this surgery, I am here asking for your help, to help me regain my life and live a life that is pain-free for even the smallest amount of time and to give me the best possible outcome by having this done by the only leading surgeon in this field.

All donations will be gratefully received, big or small, as I know times are particularly hard at the moment. Should there be any extra funds, I will donate to the only charity out there for endometriosis in the UK. Yes, that's right there is only one (that I know of). I hope reading my story raises awareness and also in some form hopefully help others out there, find solutions that I couldn't find so early on.

I appreciate all of you from the bottom of my heart.