Helen's Personal Pain Story

The very first monthly cycle I had wasn't until I was 16 and from that first cycle I was hit with very bad cramps, bleeding and pain. The doctors would try to help me, however they kept telling me that what experiencing was normal. 

It wasn’t until my early 20’s when doctors  confirmed  that I had endometriosis. Which is a condition that causes womb lining tissue to grow in other parts of your body. This tissue would then grow each month with your cycle, then rot inside your body with nowhere to go. By the time I was 30, this conditions required me to have 3 surgeries to remove the scar tissue that was constantly building up in my body.

I had also had several years of changing hormone tablets and injections. Each time I had a monthly cycle the pain I suffered with was so unbearable that  I would be screaming and crying, repeatedly needing hospital treatment to control the horrendous pain. I had been diagnosed with other conditions like polycystic ovaries and pelvic congestion syndrome because veins in my pelvis had become grossly enlarged due to me always using boiling hot water bottles for pain relief. The Specialists had me taking medications which soon became ineffective, leading to stronger doses with each visit. Strong opioids, antidepressants, nerve blockers and muscle relaxants.

This cyclitic nightmare continued with me spending large amounts of time in and out of several hospital departments, continuously having to explain my problems over and over to each new person I saw. In some cases the new doctors were suggesting medication and treatments that I had already been trying for over 15 years. Leaving me feeling that no one was actually reading my medical history and that no one cared that this situation had been going on for so long. 

Thankfully I had been lovingly supported this whole time by my partner and he had found it incredible hard to watch what was happening to me. To say we both felt let down by my doctors is an understatement and the frustration with going round in circles was leaving me feeling like no one could help me. My physical ability was slowly getting worse, with me struggling to stand up straight and needed to using a walking stick to bare weight on my left side. The multitude of different opiates I had been taking kept wearing off because I had been using them for many years. So the only medicine left to help me with pain relief was Fentanyl. Often these opiates would leave me with debilitating side effects  associated with heavy opiate use and withdrawal as the drugs would build up and then wane in my system. 

At the age of 35 I had now had 5 laparoscopies to remove scar tissue,  from my bladder, bowl and pelvis. 3 lots of hormone therapy and had needles driven into my pelvis to attempt to block the nerve pain.  The pain was not just during the days of my period now, it was all the time. This was the beginning of chronic pain syndrome, where your nerves are constantly experiencing pain signals and confused messages that caused muscle cramps and other sensory disturbances. (like feeling that your bladder is about to burst, even when it’s empty)  I was barely holding on to my job, due to all the sick time I was having away for the surgeries and pain. My partner had been suffering the whole time along with me, but the strain on our relationship was taking its toll. My mental health was so low that I would often contemplate stabbing myself in the stomach or committing suicide, anything to make the pain end.    

Now I had to make one of the hardest decisions of my lifetime. To continue suffering this way for another 15-20 years until my periods stopped or to save what dwindling health I had left, by having a hysterectomy. This would mean giving up on trying to have a child, although by this point, I was sure that this would never happen due to my many fertility issues .Then came the next wall, I was too young to be having a hysterectomy, also having one would mean a lifetime of other complications, hormone replacements and possible life threatening side effects  from reduce hormones at a young age.

It took a few more years for me to convince my doctors that I was serious about giving up my ability to have children and arguing with them about having to live the rest of my life with this condition. Finally they agreed to do the hysterectomy.  Seeing lots of different doctors, having the same tests and treatments  all the time was frustrating,  However I can't fault the excellent support from Nurses, occupational health, mental health, physio therapy and other organisations that have helped me learn lots about how to understand and manage my pain and depression.

Its’ now been several years since my then, I am still disabled from the chronic pain syndrome, muscles cramps, nerve damage, reduced mobility and mental health struggles. The good side is that my pain has been dramatically reduced as I no longer suffer for half the month, twelve times a year. 

Sadly I still couldn’t find a job due to the unpredictable chronic pain. So I wanted to do some volunteer work, so that I could still give back to my community. Again I ran into the problem of not being reliable and found keeping a volunteer job was also impossible.  

Despite my problems I felt that I could still help others with my qualifications and knowledge. I was also aware from my own personal experience that there was a lack of local support for those who suffer with pain on a day to day basis. 

So Pain Pals GY was Born. 

Thank you for reading the story of my chronic pain. If you would like to ask me any questions about my experiences, please feel free to direct message me on our Pain Pals Great Yarmouth Facebook page.