Weekend from hell

[Chocolate-lover]

My youngest is 10 years old, and my pains started before I had him, so I'm a veteran shall we say when it comes to pain, discomfort and the management of it. I'm now under the care of a brilliant team at the JR Hospital in Oxford, and have so far been diagnosed with Pelvic Congestion Syndrome, vast internal adhesions, and am awaiting results to confirm Adenomyosis.

My most recent bout started slightly differently last Wednesday with a stabbing pain in my lower left abdomen. I was off to see my GP anyway that morning, so thought I,d mention it. His remark was, "you suffer from chronic pain, love. The fact it's a different pain today gives me no concern." For starters, I'm not his "love" and secondly, the common rule is if your pain is different from the norm, get it checked. So, home I came feeling rather put out by his comment, and spent the rest of the day resting.

The next day, I was well enough to cycle my son to school, and then later help in our village community shop. Friday, it was back, with a bit more vengeance this time. I took my pain killers regularly to try and keep it at bay, and tried all my coping methods suggested by my Physio. All seemed to do the trick, and off to bed I went feeling quite proud that this time it appeared I'd won, and my pain had lost! Silly old me, I should know better! Woke up at 3am, pain and lots of it, all lower left side. Got up and took my pain meds, got a hot water bottle & tried to sleep. This was my routine for most of Saturday, get up, take meds, refill hot water bottle, apply TENS machine, go back to bed.

By 6.30pm I could take no more, I felt like someone was wriggling a red hot poker round inside me, it was horrendous. I dialled my GP,s we'll aware that they were closed, but needed the out of hours number. Oh no, it doesn't work like that anymore, proves how often I use this facility ie never! So, 111 it was then, and they immediately dispatched an ambulance.

After, great care by the paramedics, and some oral morphine I arrived at hospital and was taken straight round to Resus. My pulse was 118bpm, blood pressure 151/101 and resps 43. Saw a lovely doctor, who bizarrely arranged for some X-rays, and more routinely blood and urine samples. Had my X-rays, and some IV Buscopan and waited. He returned saying that bloods were normal, so was the urine and also my X-rays were clear, and that he was discharging me!! Errr sorry, you're what? I can't physically walk, and my obs haven't changed since I arrived, but seeing as I have history of acute and chronic pain you assume it's another flare up, and shall write to my GP asking him to re assess my pain killers! I sit there, wondering if I'd not told you my history would you have treated me differently? Or, if I'd said I had cancer, or a heart condition, would you have been so willing to let me leave? As it was, in your eyes it was just pain, nothing life threatening or something needing an operation, so therfore I could leave.

Now, here I am 36 hours later still in pain, laying in my bed needing help, but not having the courage to ask for it, or even who to ask for it. My GP was quick to fob me off as were the A&E doctors. What these people need to do every once in a while, is stop and look at the whole picture, and not at just what is presented to them. Then maybe they would realize that people like me, who are in pain must be at the top end of their scale, and had nowhere else to turn, in order for them to pick up the phone and ask for help. Don't fob us off, we are not all black and white cases, some of us are complex, and if we end up in front of you it's because we are crying out for help, your help, please make sure you give it.

[PPSN_JudyB Pelvic Pain Support Netwo]

Abdominal/Pelvic pain is one of the commonest reasons for admission to A&E. There is a lot of controversy about the existence of pelvic congestion syndrome: interested to know ho diagnosed you with this ..... BUT adenomyosis is a well defined condition albeit frequently not diagnosed. Have you had an MRI to try to establish the latter ?

[Chocolate-lover in reply to PPSN_JudyB]

Hi, thanks for commenting on my post. My PCS was diagnosed in 2012 by my old consultant Dr. Meghana Pandit - Gynaecologist at Milton Keynes Hospital, consulting at Standing Way Eaglestone . She performed a diagnostic laparoscopy as she was getting to the point where she had no idea what my problems were. When she came to see my afterwards she apologised for not believing me with regards to my pain and told me I had multiple adhesions of which she could only seperate a couple due to the severity and amount of extra blood vessels I had.

My new consultant at Oxford is wary of PCS, and that's why Adenomyosis came in. I had my MRI in December and see her for the results in Febuary.

[PPSN_JudyB Pelvic Pain Support Netwo in reply to Chocolate-lover]

Did she say where the adhesions were ? It could be very useful for you to request a copy of the surgical report from Milton Keynes Hospital for your own information and for your consultant at the JR. Interested to hear the MRI result in due course.

[Hidden]

Hi, who are you seeing at the JR? I was diagnosed with Pelvic Congestion years ago by a doctor in London & was given progesterone to shut down my ovarian function - which was supposed to help the congestion. That was in 1996. Then in 2006 i had a laparoscopy done by Tim Childs at The Manor hospital in Oxford. He said he'd never seen such a bad case of pelvic congestion - my veins were so distended they looked like really bad varicose veins. I think he tried to cauterise them as well as remove adhesions & endometriosis. It's funny that some gynaecologists won't recognise pelvic congestion as a cause for pelvic pain. Both times I've been diagnosed with it, it's been obvious that there was something wrong with my blood supply to my pelvis. The typical symptoms of pelvic congestion matched my symptoms & still do now, despite having had a complete hysterectomy in 2009.

I used to live in Oxford & was

lucky that the JR was my local hospital. The gynae team & nurses looked after me really well - except for a blip between 1998 & 2000. I was discharged from the JR in 2001, because of said blip & then went back in 2005 for IUI, where Jane Moore became my consultant. She knew me from when she had been a registrar in 1995 - and I hadn't liked her then! But she's an amazing consultant & looked after me until last year when she discharged me. I live in Salisbury now - but would travel back to Oxford to see her. Am now under pain management team in Salisbury - as Jane could do no more for me gynae wise. I hope that they look after you at the JR & that they can sort out your pain? Please IM me if you have any questions. Let me know how you get on. Good luck with it all.

A x

[HopelessOne]

I am so sorry you've had to go through so much. I completely understand your frustration and reluctance to seek help. I too am tired of being "fobbed" off by the medical community. Can you tell me please what are your symptoms with respect to the pelvic congestion? I am now seeing a gynecologist here in Canada who has written a definitive and startlingly accurate paper on visceral/somatic pelvic pain, and it paints a very clear picture of my own condition; however, no one has discussed the possibility of PCS and I believe that I have that as well.