Health Organization for Pudendal Education

Hi folks.
I have a question and was hoping to get some clarification or opinions
Ive written for some time about my issues of painful bladder syndrome and more recently crippling anal rectal pain. The latter first came on as sit bone pain in 2009 and then moved on anal rectal throbbing--- right in the anal opening..in 2011.

After studying the site and others for a long time and trying every treatment I can find, without relief... (many types of treatments), my pain is worse than ever. I am housebound as I cannot sit long enough to drive and am going out of my mind with pain and cabin fever. I am a mom of 3 and I still do my best to do whatever household chores I can handle, taking it on a day to day basis.
I am starting if its ME that's getting in my own way.

I am a very anxious person by nature. However in the past whenever I had anxiety issues which was rare,I didn't worry too much as I knew that it would pass.. and it always did!
However since the day I had my first IC symptom, I studied the treatments online (on all the website and support groups etc) and jumped into action,right away.
I did the same with the PN/ sit pain symptoms struck..My doc at the time thought it was PN but in retrospect she may have been wrong.

However along with the knowledge Ive gleaned online, I have also heard/read many horror stories.. For me these scary negative stories have been hard to dismiss. They made am imprint in my mind like a groove in a record.
Im very scared and not really living in the moment,, but in the past and the future..(fear of even more pain! based on past pain and what Ive read etc!)

Knowing myself as I do, I thinks its possible that my body has gone into spasm -- with deep unrelenting rectal pain --both with standing... and sitting I currently cannot sit at all..
-- I have pain on contact and severe after pain. One of my pain docs once described my issue as being in a severe muscle spasm..

This same spasm could also be what causes the on and off urinary hesitancy that I have...
I worry so much abut the my bladder and being able to pee enough to get relief that I am afraid of taking pain meds
Early in my IC illness, Elavil, and anti-cholinergic meds (like over-active bladder me,s gave me severe urinary hesitancy)...some pain meds do that for me as well ..
the problem is I cannot tell how much is really from the meds and what is generated by my mind! --- subconsciously expecting the problems with peeing /hesitancy----so I get the hesitancy that Im scared of and subconsciously expecting. I literally am afraid of going to the bathroom as I know it will be a struggle. Its kind of a post traumatic stress reaction.
Like many of us with IC I have been to the ER once ot twice. due to urinary hesitancy/problems peeing ...they scanned my bladder and it was emptying ok!
I got sent home with no relief and maybe a sedative pill. My husband gets very frustrated by this, so that increases my fear of taking meds, as I don't want to find myself in that situation again.
when he see me crying in rectal pain my husband can't understand why Im I wont' just take the oral meds...(I do take rectal suppositories but they are no longer working well) I have other interventions too that are not yet working... so I need to try oral pain meds again.
It's hard for him to understand both the pain and the anxiety about it.
This increases my anxiety!

I have never had a positive reaction to a PN block, and my 2 Potter 3 testla MRIs did not show any signs of entrapment or scar tissue in the area of the PN...all that showed in that area were pelvic varicosities.. which we addressed with embolization one side of the body ..with no change.

I am working with therapists with a goal of decreasing the stress/ fear of taking meds.
I also work with a bodyworks therapist -- a very knowledgable lady who thinks its entirely possible that my rectal muscles are in a huge spasm, thus causing what I desrcibed
My adrenals are overworked by all this stress/ pain and apparently from what she tells me, that directly affects the S/I joint which in turn could produce anal rectal pain.
not to be mention bladder issues as well. thats just one reason my pain could manifest this way.

I was also hypnotized recently by a therapist, I was able to SIT in a comfy recliner for 40 min. with him doing relaxation exercises.
I knew when I left and he was no longer there, my after pain would be return and be bad. IT Did!!!
A pyschiatrist I work with, (I can't spell that word!) stated that the fact I was able to be hypnotized is a good thing!
and in my case tells us that the psychological piece----- fear----- is a big part of my pain.
i.e. when I felt taken care of by trusted practitioner the pain stopped for a bit.
When I had to go home to my"prison' the pain returned big time.

So the fear factor for me is something I have to work on...I had anxiety (genetically) long before any of this pain came on, but I tackled it head on .I managed it well and led a happy productive life.
Im not saying that anxiety can create these conditions...so PLEASE DON't misunderstand....I have REAL symptoms,incredibly painful. as you all know.

Does anyone else agree or feel that my mind could be KEEPING me in this state of painful spasm...as I described? Does this sound familia to anyone.
If you'd rather, you could PM me..
I respectfully ask, that no one respond with scary or morbid stories. Ive had a few of those responses in the past and it was hard to forget.
.I am not a child, however I would rather need to hear something hopeful and uplifting!
I feel all the grim stuff we've read online can be very detrimental to our healing.
My loves ones an practitioners beg me ...Stay off the computer!
But without the knowledge provided online ....we wouldn't learn, so its a double edged sword.
Thanks folks! I apprecitate your help and knowledge as always.

Kathy, I think it took some courage for you to write what you did. Thanks for sharing your experience and what has helped you. There are things I've read online that I try to put out of my mind too because I think it is important to stay positive and proactive. But I agree with you that you can learn a lot from reading other patient's experiences and I don't think I would have ultimately found the healing I did without reading the PNE forum.

If you feel there is an anxiety factor related to your pain you might find the mind/body connection theory interesting. It didn't work for me but I know someone else who was having some success with it. If relaxing seems to help you, I wonder if the approach Vanessa Frank took of floating in a warm pool would be helpful to you -- that is if you would be able to get there for treatment.

Violet

I agree with what Violet said. My main PT has told me from the beginning to stay off the internet - but I tell her that I "found" her by reading HOPE, and that's why I drive an hour to see her. Anyone with this type of health issue has to educate themselves. Being on this site offers insight, treatments options, new ideas.... and HOPE for me.
Everyone is different, and if reading from this site, or any other site gives you anxiety, then stay off for a few months and see what happens.

I do feel that if I would have had accurate, and supportive medical care options right from the beginning - there is a good chance I wouldn't have central sensitization pain now . I had a lot of anxiety, fear etc., and surely that contributed to more pain. I'm going to be trying some warm water therapy soon..... I'll let you know if it helps with the pain.

My best to you Kathy, and thanks to Violet as always,
Debbie

Hi Kathy,

I think anxiety can play a part in pain. When my pain was very bad and if we went out if town, it felt better while we were gone. The closer we got back to home, the more my pain increased. I think since most of my suffering was at home, I associated home with stress and pain. Maybe it is similar for you? Many medicines gave me urinary hesitancy and it is very scary when that happens. I could not take anticonvulsants or some tricyclics for this reason. I hope that you are able to get some pain relief some way. I am sorry you are sufferung so much.

Stephanies

Hi Kathyd,

It is a proven fact that pain causes fear. It's the minds' natural response to the adrenalin and cortisone that is released when someone is in serious pain--the alert system to tell you something is wrong do something!! (I have never understood why physicians cannot seem to understand that you can be in pain and anxious, they tend to single out one or the other. It has been well documented in the medical journals....but I'm getting off the subject). However, when someone has chronic pain, the alert system is constantly stimulated and this can be a serious stressor to every system in the body.

Long story short, pain/anxiety/fear go hand in hand and they all affect each other so if you can help one area, you may be able to help another and stop the cycle or at least lessen your suffering.

1) I would highly recommend the book "A Headache In The Pelvis" (make sure you get the latest edition, it is much more detailed)....I know the title is silly, but it's a serious book and can teach you how to profoundly relax your areas of pain.

2) I would buy a few relaxation CD's and try to deeply relax a few times a day.

3) Stop reading the really depressing stories!! Seriously, I know exactly what you mean....when you're suffering it's so easy to get stuck in a negative mindset and you don't need that right now.

I hope this helps.

Wishing you less pain.

Jackie Ouch

Hi Kathy
Your post reachs out to all of us, we have all felt scared, frightened and isolated. The internet does not offer all happy ever after stories and my mum who is cyber phobic hates me reading stories on the forum. However without this forum and a similar one I was able after months of giving up to find a diagnosis and consequent surgery so it's been a lifeline. I agree there are negative posts and they can be upsetting but the moderators on this site are fantastic and always response with honestly, integrity and positivity.
Since this condition and surgery I now take stock of my life and appreciate all that is around me. I no longer plough through life 100 miles an hr but take each day as it comes.
You will make your own happy ending in whatever way possible and I wish you much luck for the future.
I have found since surgery that gentle swimming is the only time I am pain free and also is a lovely opportunity to cleAr my head and fill my mind with positive thoughts that I will eventually beat this condition.

Thanks Violet, Stephanies and everyone for your kind posts and support!
Its nice to talk to those who understand...and Im grateful!
Thx for all your ideas.

There are many things Ive tried but must give another try to.
When I have hesitancy or constipation I blame the pain meds.. but it can also come from always being in a state of fear!

Oh Stephanie, Yes I can sure relate to what you said about home...I too feel better when out of the house..As soon as I see my street, I think "prison" and my depressed/ anxious state returns! I am happiest when out shopping when Im up to it.
I had a weekend in Boston in 2012 with my family, for our son's college orientation, and my pain went down big time. I was so happy..only to return when I got home!
Other times on summer trips to the shore, I still have the pain ,so its hard to know,but I agree about being at home, generating the pain
This plays such a part in pain. When I can drive myself again, the feeling of freedom will be all I need to get back to being me again..Its just getting enough pain relief to be able to drive ..thats the big hurdle. Ive debated about driving despite the pain flare it will cause ,as the independence and psychological benefits may be worth it..such a gamble! Ive tried it and the after -pain was bad, but it receded over a few days.

The meds Stephanie mentioned the tri-cyclics --did the same for me early on-- thus i developed the apprehension of all meds. a traumatic stress reaction --in a way.
How did you overcome this problem?
I know intellectually that not all meds will do this, but since I do have hesitancy anyway as part of my PFD, its hard to tell if its coming from meds or fear. My husband stubbornly demands I take a particular pain med --- and he doesn't get how scary it is to sit on a toilet and not know each time what will occur.

I think my whole pelvic floor problem originates from the hesitancy. All the pressing and pushing to get the pee out puts the pelvic floor in spasm, and increases my anal pain. I can feel it happen.
Doe anyone think that all the gentle pushing to get the pee out could have generated the problems I now have? I felt the need to push to empty my bladder, starting at around age 18, (One day around age 18 I noticed I was having trouble emptying.. but only slightly.) The problem continued
and I am now in my 50s...so Ive been doing it for years! tho the severe constant urge/hesitancy issue (which they dx'd orignially as IC/PFD started in 2006.) Ive asked many docs if I caused my problems by my dysfunctional peeing habits. I have to stand and push on belly to get it out! The docs said no, but I tend to disagree.

Believe me you folks know more than most any doc/ nurse Ive met..
Thanks folks for your kindness and thoughts..
Love to all,
Kathy

Does anyone know how to access the Vanessa Frank book these days..I haven't been albe to find any info on it these days.

Is a 'warm water pool' referring to the temperature of a pool at the local health club? Ours is pleasantly warm, but a typical health club pool temp..would that do?
Thx!

Hi,
I just wanted to add my thanks to DebbieW, Jackieouch and positivepoppy..I can really relate to each one of your posts and appreciate your advice.
Thanks so much., and my wishes your comfort and recovery as well!

BTW ...I have the oldest copy of" Headache in the Pelvis"..bought in 2007. David Wise described the relaxation technique but in very vague and complicated terms.. as he
obviously wanted folks to attend his class.
Is the new edition of the book more detailed on how to do the exercises? Tho its hard for me to do on my own, this is what I really need?
I have tried many mind body things but without much success..--I have a mind that is very tough to quiet ,but I still know that's is what I need! I just have to some how re-train my mind, and put a new groove in there!
Thx all for your support ..It means a lot.

Happy Easter to all.

Yes, I was surprised to find that the newest edition of "Headache in the Pelvis" was much more comprehensive.

It's not a magic bullet, but it helped me to learn to relax specific isolated areas of pain, as opposed to general relaxation. When you're in a lot of pain, the normal response is to tense up, putting even more pressure on the nerve.

Unlike the more invasive treatments, it can't hurt, and could be helpful to your entire nervous system.

I hope so.

Keep us updated.

Wishing you the best,

Jackie OUCH