Still no answers two years on

It has now been just over two years since i first got sent to hospital for an emergency scan in case i had an ovary about to burst, where they said they hwad no idea what was wrong. i was told i had a tilted uterus and a strange womb lining from the ultrasound but my ovaries looked fine.

i have had a diagnostic laproscotomy since, where they found a small amount of endo but 'didnt think it was worth removing' and just advised pain managment clinic.

since then i have also had a hiatus hernia diagnosed, my gallbladder removed and someone finally thought the fact that there is always white cells, proetien and blood in my urine (for two years but no infections) was an issue and i am seeing a bladder urologist.

I have all this and still i have a myst4ery pelvic pain, i take paracetamol, pregablin, tramadoal and oxynorm and i am still living evryday in pain.

i feel tired and frustrated and i just want ot curl up in a ball and hide. Does anyone have any idea what i can do next? my gynea is so disinterested that she didnt even have my surgery notes for a post surgery catch up and 'guessed' that it was s small amount, of endo.

help

p.s on a bright note i am having my tonsils out saturday after 15 years of tondilitis woop

17 Replies

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  • Do you know WHERE the endometriosis is as this can be very relevant ? also relevant is whether it is superficial or deep. Have you been to a pain clinic since the laparoscopy ? The bladder issues and the endometriosis may both be relevant.

    What part of the country are you ?

  • the gynae didnt know where it was or how big it was when i met with her after, she didnt have my notes so she was going from memory, this is 3 months after! i have been waiting to see pain managment for 8 months

  • im in south wales

  • That doesn't sound satisfactory at all when they see so many patients. She may have mistaken you for someone else : who did you see ? In your position I would request copies of your medical notes of the scan and laparoscopy. You can do this via a Freedom of Information request to the hospital. Let us know how you get on with this

  • thanks she was a lady called dr pathwarden. i am seeing my gp tomorrow to ta;lk about it becuase my job is hanging by a thread now due to 'suitibility to complete my role'

  • I also have white cells, protien and blood in my urine! however, my problem and pain was caused by a stupid barthilin gland and an infection that wasn't treated in time.....but I read somewhere white blood cells can also indicate inflammation

  • thanks. I have had blood tests for inflammation and they found nothing. saw my go this morning and hes sending me to a rheumatologist to get checked for CFS or ME.

  • I have severe vulvodynia with stabbing pain and vibrations

  • Mary Jane,it sure sound like pudendal nerve damage! I know the pain for almost 8 years.On my way to surgery @ MAPS in Minnesota. MY gyne sent me home with Miralax! I would search for a reputable Pelvic pain Dr.Ask if they do internal blocks,ONLY while asleep! You may get long relief.Two failed blocks is a sure sign of pudendal nerve entrapment.Start researching and stay away from the pain clinics! Drugs really won't phase this.I have opium suppositories,morphine for the unbearable. Pains,sometime Tizanidine eases the most,sometimes just 800 IB and clonazepam and sometimes all! Tizanidine will knock you down,but, I've had them all. It seems best! Hope. This helps some. God bless you today! Judy r

  • ok, thank you for replying...

  • Sammyanne,Can you pinpoint your pain to an exact area? Judyr

  • the pain is all over thre pelvic region but it contantly worse on the righ hand side, sort of dead in the middle of the righ hand side.

  • This doesn't sound Like any pelvic problem,unless it could be an ovari. What procedures have been done in that area ? Judyr

  • an ultrasound where they found the titled udterus and a diagnostic lap where they found the endo. my whole pelvic are hurst and feel constantly like i am having the worst period of my life right into my hip bones

  • I have this awful pain also with Levator ani and pudendal damage.I was constantly having a baby.but,it still sounds like ovaries and infection. More research on your part if your gyne is no help,you have to find another! Prayers,I know your pain,Judy

  • i saw a private one and she said to stick with the one i had, she was really disinterested and for a gynea really unsympathetic about it! sometimes i do feel like i am giving birth i get contraction systle pain and it makes me weak in the legs,

    thanks judy

  • Sammy,I'm at a loss! Sounds like my gyne! Iwould stay away from pain management,but I would search for a pelvic pain spec. In US,this was very difficult,but, from what I have studied your pain could have come after all your procedures. Go to Sjantolak@aol.com.Study the pudendal info on every site.Antolak studied under the French dr. Name??? I'm so sorry for your pain,as I am in now, It's a nightmare,but,there is help and hope! Prayerfully,Judy

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