Pelvic Pressure, Pain for one year. Bowling Ball Feeling

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I don't know where to begin. I am posting for my mom. Since May 2014, One year ago, She has been having extreme pelvic pain and pressure. Doctors are baffled and cannot figure out what is wrong with her. She has seen so many specialists and doctors that she is getting very depressed and frustrated. This all started when a dog (great dane) pulled her down the stairs, twice. She fell on her stomach and head. Ever since, she has been in pain. Concidence? I don't know. She had MRIs done, CT SCANs, ULTRASOUNDs, XRAYs, etc. No one knows what is wrong. Her symptoms are pelvic pressure, pelvic pain, bladder prolapse, constiptation. She always say she feels like she has a bowling ball in there or she is sitting on a rock. She cannot sit or stand or sleep properly. Too much pressure and pain, she says. She has been seeing a physiotherapist for exercises but nothing is wrong. She tried actunpunture, heating pads, baths, etc. Any advice or opinions? Thanks

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  • Posted

    Hi EoF

    Sorry to hear of your m's pain and frustration.

    There are certain aspects I picked up on that that rung a bell - You saying that she had had a fall, that the pain is bad sitting and also the bowling ball effect. My own experience of pelvic pain was diagnosed as Prostatitis (yes I'm male but bear with me). Prostatitis is a catch all phrase for a lot of different conditions many of which are never identified. The Medical proffession are increasingly using the term Chronic Pelvic Pain Syndrome instead.

    One of the possible conitions is due to nerve damage. In some cases it's a Pudendal nerve problem. This nerve runs from the lower spine through a canal in the pelvic bone and branches to many organs including bladder, bowel and genitals. Damage therefore can irritate any of those areas. It is quite difficult to diagnose this condition and it is initially done through exclusion of other possible conditions such as infection.

    However there are a collection of symptoms that should raise the question that pudendal nerve damage is a suspect. These are:

    Pelvic pain that worsens over the day.

    Pain in the perineum that makes sitting very uncomfortable (but not quite so bad on the toilet seat}

    There are potentially many other symptoms - change of bowel habit, genital pain, bladder fullness to name a few. The trouble is that these are symptoms of many other conditions too.

    Pudendal Nerve damage often has an identifiable root cause. A physical accident or even child birth. These might not initially be a problem but if you are seated and  under tension for long periods of time then that initial damage can get aggravated and at some point the nerve will trigger haphazardly. Settling the nerve is quite difficult.  Vigorous exercise seems to worsen the state. It tallies with the symptom getting worse down the day - we are usually more active then.

    If you think these symptoms fit your m's then do look up Pudendal Nerve Entrapment PNE and  Pudendal Nerve Neuralgia PNN and Pudendal Nerve damage generally.. Of course you need to be wary of making her symptoms fit what you read. There are many causes of pelvic pain. Interestingly PNN/PNE rarely shows up on MRI/CT scans.

    For me - my GP put me on 28days of antibiotics for prostatitis. It had no effect. I self diagnosed my condition as it fitted cause (lower back and pelvis  damage) and symptoms almost exactly. I was in quite a dark place with the pain for 3 months this year until I came across PNE etc A lot of rest / lying down flat has been my solution. I am about 80 - 90% better after a further 3 months 

    Good luck with your research and don't give up.  Richard

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    • Posted

      Thank you Richard. It is hard watching your mom going through pain for a year now and no doctors can help her. I did google PNN and PNE and it does fit some of her symptoms. Any condition you research always sound similar to symptoms you have so I am not really sure. Nothing makes her feel better. Sitting and laying down acutally makes the pain worse. Standing up makes it a little better but she is in pain twenty four hours. She sits on a heating pad for pelvic pressure and pain. She said it feels like a knife twisting in there. She is on gabapentin and that barely works. She tried alot of things. Who can diagnose your pnn or pne? She already seen a 2 gynos, urogyno, internal surgeon, walk in doctors, family doctors, many tests done, physiotherapist, etc etc. They can't find the source of her problem. She tried to say that this happened right around when the dog pulled her down the stairs but doctors don't want to listen. They think it is something else but doesn't even know what. She is very depressed and frustarted and upset. Right now, she is waiting for nothing. She is seeing a new doctor soon but everyone is stuck basically telling her to deal with it. I hope she recovers soon and they figure something out. Keep me updated and thanks again!
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    • Posted

      Hi again EoF

      I can understand your frustration and it is no doub't quite scary at times for both of you. But that's the unknown for you. You have to bravely confront that not run from it.  And that's why you are here - confronting it.

      The prescription of Gabapentin is interesting in a way.  I see that in your m's case it seems that it's being used to treat nerve neuralgia (it's also for seizures but that doesn't seem relevant). If your m is getting 'any' sort of relief from it then it might be a little clue. The trouble is, nerves are often difficult to calm. PNN and PNE are poorly understood and difficult to test for. They are both problems of the Pudendal nerve The diagnosis starts by excluding just about everything else first. I assume that the MRI and CAT scans included the lower vertebrae, pelvis and SacroIlliac joint. I say this because those scans might reveal nerve damage that might be the cause. The annoying thing is, they don't always. The scans should have excluded things like Endometriosis (perhaps less likely if your m is over 45 but still possible). Perhaps a question to ask is why they have prescribed Gabapentin. If they say 'to calm nerves'etc  then ask which nerves are suspect. A lot of nerves at the base of the spine could hold the key.

      I do hope you start getting answers soon and I would be interested to hear of any reactions to those questions.

      Richard

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    • Posted

      Also - ask your m if the main pain feels like she landed astride a bar. That would hit the perineum. It's a top sign for PNN/PNE.

      R

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    • Posted

      She was prescribed gabapentin because she pretty tried everything else. Ibuprofen, Advil, Aleve, T3s, gabapentin, etc. The next step would be strong hard pain medication and she doesn't really want to as they are addictive. Gabapentin is to treat many things. Back pain, sciatiac nerve, diabetes, etc. She has lower back problems and nerve problems with the pelvic pressure and pain. Gabapentin sometime works, sometime not. She said she agrees that she feels better when sitting on the toliet seat. She also feels better when standing up. But sitting and laying down makes everything worse. They already checked for Endometriosis, things like that and everything seems normal. She is upset and I hope she does recover soon. We researched more about pudental nerve and it does fit her symptoms alot .... but we are not sure. I think she needs another MRI scan or something. Doctors needs to take her more seriously. How are you feeling? How did you recover? What is the treatment for pudental nerve, if any? Thank you again.
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    • Posted

      Hi again. My mom went to the walk in yesterday morning cause she has no family doctor at the moment. Not even kidding .... Her family doctor didn't want to help her anymore so he sent a letter saying "he has too many patients" which is a lie. He just didn't want to help her anymore because he can't figure it out and probably thinks she is crazy now. Very upsetting. She tried to see another doctor last week but he won't take her as a patient either. So yeah ... she is being blackballed by the clinic because her symptoms are so bizarre to them and cannot find out what is wrong with her. Tsk tsk ... Anyways, MY family doctor was on walk-in call yesterday so I told her to go in and see her. My family doctor cannot take anymore patients though but was nice enough to help her for a walk-in appointment. My mom is getting another mri scan of her pelvic area and muscles down there and got referred to see a pain management specialist and maybe try an injection. We know this is a temporary solultion but if the injection did work, It had to do something with the nerves down there. Maybe even the pundenal nerve which my mom did mention and the doctor knew what she was talking about. My mom did get an appointment with a different family doctor but at a DIFFERENT clinic so hopefully he can take her in. That is it for now .... Hopefully she recovers soon. Keep us updated! Thank you
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  • Posted

    Me again EoF

    From a 'Brit's' point of view your practioner situation seems quite alien.  I guess you are in the U.S.? But no point just criticising the system.  Have to battle away at beating it or at least getting it to work for you.

    I suppose one question in your m's case is - is it the nerves themselves that are damaged or is it something else that's triggering them?  It could even be both.  It's not very helpful for you though.  unless you can find out.  And by all accounts that is tricky. The mri scan might answer that.

    In the meantime analgesics are important.  All of us want to be healthy and expect rapid solutions to problems.  But if problems are slow to reveal themselves then in the meantime we have to accept that painkillers are going to have their role to play. 

    If, as you would hope, the mri scan pinpoints an issue then you are on the road to treatment. It's what to do if it doesn't.  I assume you will ask the practitioner where you should go from this point on. While you are in that limbo process is it worth exploring alternative medicine? I have mixed feelings about that but t can have it's place. I have used chiropractic and osteopathy.  I seriously contemplated accupuncture before I found my 'solution'. I think that these things have their place in healing but primary efforts should be with conventional medicine.

    Best wishes

    R

     

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    • Posted

      Hi Richard ... How are you feeling? Where are you from, anyways? No we are not from the usa ... canada actually! My family doctor is pretty good and usually goes above and beyond. She was on walk-in that day and helped my mom by ordering a new mri scan and just a referral to a pain management specialist. So we will see. She now has a new doctor ... She saw him last week and he will take her as a patient which is good! He seems okay. He thinks it has something to do with the nerves and muscles. Guess we will see ... Hope she feels better soon. She did try acupunture last month and it did not work. She is already see a physiotherapist and it's not really helping. Keep us updated and thanks for replying.
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  • Posted

    Hi EoF

    I am ok thanks and I mainly lead a normal life if I keep aware of any potential downturn. Many of my problems have been self inflicted in a way because I think that they largely stem from a long time playing rugby (Canada are good at that!). It is part of the reason that I came to Leicester to study as a student.  It is a hotbed for the game. Flying is easier on the body. At least it keeps the mind in gear these days.

    Anyway - back to 'us'. At the moment it seems to be down to 'hope' for your m. That's too easily said but at least you are on a road going somewhere. You are seeing practioners and a new look is underway. I still haven't been back to the 'GP' (do you use that term?). Perhaps I should but I am not optimistic that I can get a hugely better quality of life and I don't want to risk investigations into spinal damage etc. Those procedures have a reputation for being life changing both ways.

    Thank you for showing concern my way.  I hope you are in good health EoF ... EoF! That's a more imaginative user name than 'Richard' anyway

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    • Posted

      Hi Richard. Where do you live? I am assuming europe or something ... Yes I don't mind Canada. We do have free healthcare so that helps but the waiting list can be long depending what you need and depending how good your doctor is. We do use GP or Family Doctor. My mom is doing okay, trying to focus on other things but still in pain 24/7. We are just waiting for her MRI results and another MRI to check out the nerves and muscles. Otherwise, it is a waiting game. It has been 15 months now. I hope she gets better soon! Thank you ... I am doing okay. I have other health problems and I hope I get better soon too. Haha EOF .. eyes on fire is a song! First thing that came to my head when picking a username. Anyway, keep us updated. I'll let you know if we figure this out. May take weeks ..... Take care.
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  • Posted

    EoF

    In my curiosity over the name I had already searched and found the song. Played it too :-). Yes, Brit as in British - as in a small island that thinks it's big. Leicester as in a smallish harmonious multi-ethnic city whose most recent claim to fame is the discovery here of the remains of one of our kings.  A chap called King Richard 111.

    I don't think we are related!

    Wishing you health too EoF

    R

     

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    • Posted

      Hahaha. That is awesome. Yes that is where the name came from. Hmm interesting. I will have to google your town. My mom got her referral from the pain specialist. Unfourtantely, she will have to wait 3 months. Waiting game continues. Thanks!!
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