Health Organization for Pudendal Education

Hi all, I am brand new to this forum. I have been diagnosed with A.S. and P.N. I am having a horrific day and feel utterly despondent that these two diagnosis, which overlap in a million ways, can be sorted out by myself of the U.S. Healthcare system.

In a nutshell, in 2001, I had abrupt onset inguinal pain and change in gait.
I was an avid exerciser at the time, finding my body very stiff and uncooperative if I didn't exercise.

OB-GYNs vs Orthopaedics vs etc etc convinced me that I needed a stat hysterectomy. They had NO IDEA what they were talking about!

So, into my autoimmune and chronically inflamed pelvis came a surgeon famously able to complete a total hyst via laproscopy in 42 minutes.

End result: nerve damage, bones in pelvis still inflamed and fused/fusing, depression, change in personality, yada yada after that.

I have seen both Dr. Renney (2007) and Dr. Antolak (2013). Both looked like 'deer caught in headlights' when I told them I had A.S.

Rheumatologists have written me off as: bipolar, "hypersexual", if I say the extreme genital pain is the worst part of A.S. Since the literature on A.S. refers to Groin Pain as a 'Hallmark Feature' I though everyone had this. I do tend to come off as very Anxious (for some reason).

I did manage to parlay the A.S. diagnosis into disability benefits: but I was dismayed to learn that simply telling the truth (my left side genital are being tortured and making me lose rationality) did not work. Some lawyer did something I don't know how...

Meanwhile, I've become dependent on my husband's career (I am well educated and used to contribute more $$ to the household). And he has been laid off repeatedly in the last decade for a variety of reasons. so I feel like my duty is to be as ***small*** as possible.

I am sorry for the emotional dumping: but I just can't figure out how to give a damn right now. Hubby looking for work again; my parents are 'wasps' who think The System works, my sister is a new age gal who won't talk to me (tough love) until I take on Monsanto at gunpoint; my oldest son in a genius in college --- needing money of course. In my fourties, I lost my best friend. As I look(ed) younger than I felt, and couldn't walk across the den, my world shrank 1000%.

I'm sure at some point in the future, I hope to get that pull yourself up by the bootstrings urge, but having some actual goals that are achievable financially and practically would be Everything.

Welcome cgp,
Loved your post, sounds the wrong thing to say, and I do sympathise of course; I can empathise strongly too, and you wrote it so well.
I have also told the (embarrasing) truth trying to get a benefit (still haven't managed) and they just looked at me sadly and shook their heads, part "Liar" and part "you sad fool" Also the bit about being small . . . . I intend to grow We probably have a lot more in common (I'm a kept woman now too) and have only just now been reading about Ankylosing Spondylitis but more in relation to enthesitis. Is there a test for this problem? or is it based soley on how the spine presents?
Really sorry, I ahve an appointment and have to go out now. . . . but just wanted to say Hi and that you are among people who can relate and hopefully help.
Take care,
Helen

I am sorry you are having such a tough time....glad you found the board though. I can apprecaite your "dry" sense of humor, we shall call it. I share many of your feelings. I have PN that is complicated by other health issues too.

I was afraid Dr. Hibner would react like you said Dr. Antolak/Renney did. I told Dr. Conway (via phone conversation) and Hibner (actual visit) about my "extra health issues" and neither had any issues with it. Maybe you could contact them? They see autoimmune, orthopedic, etc. issues in conjunction with PN and are still quite willing to treat! I am sorry you had that reaction though, I dread that reaction from doctors.

I understand losses from PN. I cannot leave my house without someone driving me, cannot attend most events, take my kids places, etc. It's hard when PN affects your friendships too, been there had that happen. I also understand not liking being dependent financially, almost all the medical bills that come into the house are mine. At least you have your benefits, right. Trying to get some positive in there!

Goals.....that is a good idea. Maybe you could make some short term goals? Do you have a pain management doctor? Could you try a new PN doctor? There are some other doctors that treat PN that I have seen listed on the welcome board (just under your post) that may be helpful too. You said you are educated, do you have a Master's degree (I am thinking online college teaching?) Could help keep your mind of PN for a bit?

How wonderful that your son is doing so well! That is a positive too! Yes, college is expensive, but the fact he is so academically able is such a blessing. Again, try to find the silver lining. I know, oh how I know how hard that is....I struggle everyday with it. Easier said than done, but we can try!

Again, glad you found the board....hang in there! There is more to be done so you can get back to life!

Hi Cgp

I was recently asked by a therapist what my goal is - i had no immediate answer that i could feasibly think of - at her suggestion she finally wrote down 'reduce the pain'.

Have you considered writing ? - your post jumped off the page when i read it.

Rosemary x

Hello Cgp,

Welcome. It's OK to dump -- that's what we're here for. It's OK to be in a "dark place" and to grieve but hopefully you won't stay there. Just from your writing style, it's obvious you still have some fight left in you, and one motivation I can think of to persevere is that you still have options available. There was a time I thought "life as I knew it before PN" was over but now I have most of my life back.

I'm not an expert on A.S. so all I can offer in that regard is emotional support, having gone through pain myself. I just read up on AS a bit and it looks like physical therapy to prevent permanent spinal deformity is pretty important. There must be a physical therapist who has knowledge in treating PN and AS.

Have you had an MRI yet? If not, there is a lot of advice on the forum on what type of MRI to get.

Violet

I bet I broke all kinds of etiquette rules by 'dumping' on my first post, then being awol from the site for a week. I am not very comfortable (yet?) with social media.

Anyway, you guys actually helped me beyond what I could've imagined. I love the "you sad fool" quote (that some medical practitioners seem to think.)

As far as the enthesitis question: I would like to offer my story of getting diag'd with A.S. with very few typical symptoms. I am pretty suspicious that a number of PN sufferers may have A.S. because there really is a huge overlap of symptoms. To that end...

Act 1: After the fall to left hip in 2001, I went through round robin of doctor visits. Every possible imaging test, until finally landing in the "You're not really trying to get better" folder. Following my mother's example to never give up reporting symptoms to strangers (!) I found myself telling my son's orthopedic P.A. (my son had a broken foot) about my pain. He strongly suggested I see the orthopedic surgeon in their group.

This doctor looked at all the tests I'd had over the last 5 years, and despite some bulging discs, said "I don't think its your back." So he ordered a CAT scan of the pelvis. The results stunned me. The report talked about my 'sacroiliitis' and probably history of irritable bowel. (My bowel seemed fine to me.) The result was a solid recommendation that I be seen by a rheumatologist.

Act 2: The rheumatologist did bloodwork, sure that the findings would corroborate her suspicions. They did not. My bloodwork was utterly normal. But she told me that I absolutely had sacroiliitis and that I should start on a trial on Enbrel to see if it helped. No one said "Ankylosing Spondylitis" to me at that office.
But the Enbrel worked miracles for the first 2 months, then the response faded away.

Act 3: In an effort to get me to tell my troubles to someone else, she suggested I call the local A.S. support group and also sign up for the gene study with Dr. Reveille. I did, and since my bloodwork was so normal, they sent my X-Rays around to the 2 others arms of the study to confirm the A.S. diag. They told me that I 100% had A.S. based on the only mandatory criteria: fusing of the sacroilliac joint. I learned that my right S-I joint was 'fused solid' while the left was not. So my pelvis lived in an asymmetrical manner.

So there you go. It makes a decent bit of logic to me that if my pelvis is triangulated wrongly, and the SI joints, pubic bones, ischial tuberosity etc are chronically inflammed deep in the bones and also where the bones connect to tendons (the enthesis spots) that the pudendal nerves, among others, would get messed up.

Final note to women: my pamplet on "AS in Women" says that we often suffer more than men because our systems resists fusing. So the inflammation tends to stay localized to the pelvis and low back. But the process of fusing clears the pain as the bone responds to the inflammation by growing more bone. So less fusing = more chronic pain.

Yet, I hear ALL the Time, that women rarely get A.S. and that if they do, it is a milder form.

I feel so much better to be in this forum, where the unspeakable is apparently spoken! I hope to help and be helped more as time goes by.

Take care.
Cathy

ps - Dr. Antolak's "self care" protocol has been very helpful. I don't mean to undermine his very compassionate care. And, while in Houston, I saw Dr. Renney who was still practicing. He was so quiet I'm not really sure what he thought about my situation.

Has anyone given you a clue as to why your sacroiliac joint did fuse then Cathy? ( I suppose I mean why just that or do you have other entheitis or fusing(s)? You mentioned a fall, any connection do you think?. . . . . Sometimes our bodies just turn against us!!

I had a strange arthritic condition in my early twenties. My ankle swelled ridiculously, then my wrists. A blood test (if I remember correctly) showed some weird arthitis problem. Two previous glandular fever bouts were blamed. All very strange, and hell it hurt, especially when it got to my spine . Luckily that stage didn't last long.
It took just over two years to work it's way out of my system. My youngest son also had symptoms for a very short while, he now has psoriasis which has an arthritic connection hasn't it. Unfortunately his skin condition has lasted, although a less stressful job and diet change seem to be helping.

I had also just found out about AS as I was finding a bit more out about enthesitis. It isn't much mentioned on here but I do think there are connections.
I had a pelvic MRN (1T) some time ago which showed gross enthesitis in my glute minimus and medius. I had always thought that this 'gross enthesitis' was due to a huge muscle spasm I'd had after a fall which kicked the whole pelvic nerve problems off. Got to say that the entheitis doesn't really bother me unless I rub those areas, so I don't (although it may have something to do with the ischeal tuberosity pain too??)

Anyway, enough about moi! What do you have in place to deal with the PN? medication, any physiotherapy? Can you handle it? I'm thinking that your asymmetric pelvis causes the muscles to react, causing the PN, so PT may be able to address some of the PN pain? I suppose the ss and st ligaments may be affected either? UGH!! Well, I guess everyone with PN has a challenge working out where the problem stems from, I suppose at least you have some clues there. AND you absolutely confirm the link between sacroiliac dysfunction and PN. Well done !
The trouble for you is that the AS, responds better to movement and exercise and is worse on getting up in the morning (from the little I have read about it) while almost the opposite is true of PN. . . sorry, stating the obvious is probably not helping you OR if your bloodwork isn't showing a rheumatic condition now, do you think that the AS has done it's worst and departed? You don't have to answer any of this btw but you have really got me thinking.

The more I know about the medical system in any country the more I am amazed at how much stuck in their own specialties, blinkered to a necessary holistic approach they are. As soon as they face symptoms that are not 'scripted' within their modality i.e.

cgpsommers wrote:Rheumatologists have written me off as: bipolar, "hypersexual", if I say the extreme genital pain is the worst part of A.S. Since the literature on A.S. refers to Groin Pain as a 'Hallmark Feature' I though everyone had this.

I love the fact that this is then a problem of your own making, rather than something medical, if only they would put two and two together or even give it some thought!

cgpsommers wrote:I though everyone had this

Why wouldn't you?. . . . I could scream!
Do you think that we should all get together and write a book about the ridiculous things that have been said to us while navigating medical systems worldwide, or would no one ever believe it? It would end up in the fantasy section entitled 'Deluded' ( and probably their own fault)'.

Take care,
Helen

I'm hoping that you're still monitoring your post. By the way, looks almost identical to my story - like reading my own. I've had PN since 2007 which was misdiagnosed and a full hysterectomy followed. I've been down a long road but FINALLY was put on the correct pain and other meds and had a remarkable result. My pain gradually reduced to a completely manageable few flares here and there.
I started having larger, months long flares 4 years ago but each time subsided but I'm now in a 10 MONTH long flare. I'm seeing an excellent doctor and after many tests, it now looks like I might possibly have AN. Don't know yet but par for the course. I also have lupus but nothing comes close to dealing with the PN.
I asked my doctor if there was a link between the two conditions or if the AN would cause the PN pain flare up. He wasn't real sure but it seems there has to be some kind of connection, given the location of the pain. Now I feel even more depressed than I have been these past long months. I always knew that I may one day revert back to my original pain-every-day situation, but didn't see this coming...
From the little that I've read, it doesn't seem that AN can be cured which means that this may be my new normal. Has this been your experience?

Sorry to hear you have a new diagnosis. What is AN? I have not heard of it.

Violet

It's Ankylosing Spondylitis and is an autoimmune condition. I have damage to my hip which may point to this being my problem but I won't know until I see a rheumatologist. This post's author is suffering with both conditions and has a very similar situation to mine. This gives me some hope that if this can be treated maybe I can go back to my previous life of low pain flares. Not nearly a normal life but certainly better than being in bed all day.