"Debilitating pelvic pain"

A year ago I presented to my previous GP practice with sudden, extreme bloating. I looked 7 months pregnant. I swiftly had a CA125 that came back normal.

I had also started bleeding outside my period and experiencing debilitating pelvic pain and got sent to emergency gynae by out of hours and was examined internally by a student on their rotation who told me I was fine and they sent me home.

I then had an abdominal ultrasound and was given the all clear for cancer last May. My debilitating  pelvic pain became a daily occurrence, worse during periods and ovulation, and my bloating worsened considerably and became almost daily also. After 4 months of daily agonising pain I had to go to A&E after vomiting and passing out with a bowel movement after which I was bleeding a lot from my back passage. Not the first time this had happened but this was a horrific occurrence.

A&E at the QEUH we’re amazing, they felt it was gynae related as this was happening cyclically along with the worsening of the regular pelvic pain, bloating etc. The gynae registrar refused to admit me saying they couldn’t add value to my situation.

I was admitted to surgical for three days. Staff seemed to try to help but they immediately withdrew pain relief and I had to beg for something more than paracetamol. One doctor eventually came to see me and told me that I’d appeared on their ward out of nowhere. When I disagreed that I simply had an anal fissure he shouted at me and told me I was a difficult patient but that he would continue to treat me all the same. He also told me to lie down in your bed otherwise I will refuse to speak to you. I was terrified by this behaviour. 

I was very emotional, due to the behaviour of the doctor but mainly because I’d been in pain for 4 months and I was later told by doctors on the ward that they felt I was not able to look after myself in the community despite all my problems stemming from pelvic pain. Psychiatric Liaison were then brought in to assess me.

Two doctors came to my room and  concluded that I was mentally sound but simply struggling with constant pain and the lack of support. I guess this is where having a mental health history can go against a patient? Instead of seeing me as a whole person with legitimate symptoms I was reduced to a hysterical female complaining about a bit of blood. In the end, gynaecology repeatedly refused to see me despite surgical staff asking them to and I was promised an urgent appointment upon my discharge. It never happened. 

Meantime I have sought private appointments. However, I have deteriorated rapidly in the last months aside from a short reprieve on medication of 6 weeks pain free from my pelvic pain.

Unfortunately in a matter of months I’ve lost 24 lbs as I struggle to eat due to nausea and feeling full.  I have new back pain/flank pain and consistent bladder irritation and go to the toilet 18-20 times a day. My bloating is now at horrific levels, I suffer fatigue that is so bad I can no longer work and am off sick and I cannot walk any distance and am now using a wheelchair. I’m mainly housebound. 

I had to attend my new GP practice (fantastic practice) last Monday with new pain again and two GPs examined me, which is the first time I’ve been examined in a year. They found a mass so I have now been referred urgently to Urogynaecology at the QEUH. I am currently waiting, consistently deteriorating and losing more weight with debilitating fatigue and pain. It is difficult to manage my pain as I react badly to opioid medicine as they make me vomit a lot a few hours after taking them and leave me feeling really ill.

I feel incredibly let down and that I’ve gotten to the point where whatever exactly is going on with me has deteriorated to the point where I’m housebound 99% of the time, unable to work, at financial risk, lying in a bedroom in agony in huge part because I wasn’t listened to. I’m also exceptionally nervous about whatever assumptions are being made about me due to previous mental health problems. I am terrified of being put in the position again where I’m basically at risk of being sectioned when what I need is proper investigation and treatment of constant pelvic pain, abnormal vaginal and rectal bleeding, painful extreme bloating and debilitating fatigue. It surely cannot be right that a previously healthy and active woman is reduced to skin and bone and left to suffer in her bedroom? 

I hope that my urgent referral to Urogynaecology comes through quickly because I am just hanging on here. I also hope that when it does come through that I’m treated with kindness and compassion and seen as a whole person, not just a mental health diagnosis.

A lot could have been done better in the last year. If I had been taken care of I might not be in the position I am in today at great cost to me and my health, my future, my career, my employer and my livelihood.  

No one should be left in debilitating levels of pain for 14 months, alongside other symptoms, only to eventually find a mass has presented itself in their pelvis.