Newbie Here - PN for 6+ Years

[ChiMommy]

Hello Everyone,

I'm so glad I've found this board. I was diagnosed with PN about 2 weeks ago, however I've had this pain for 6+ years (previously diagnosed with Chronic Pelvic Pain.) I went to PT 2-3x per week for about a year and a half with 20 - 40 botox injections in my pelvic floor every 8 weeks at the same time.
I was put on Hydrocodone/Oxycodone/ibuprofen/flexeril/Valium Suppositories/Neurontin. I got very little relief with any/all of these Treatments/Procedures/Medications. After a year and a half or so my dr said there was nothing more they could do for me.

I have non stop deep aching pain 24/7, burning most of the day and sharp shooting pains that randomly come and go. I have been diagnosed with a Neurogenic bladder, (i retain urine and self-cath 4-6x a day.) I get constipated and have severe burning pain when using the restroom either way.
When it comes to sexual dysfunction, I used to be an "Adult" performer, and i Have severe burning, sharp and spasming paing when trying to do penetration of any kind. I have fought this with everything inside of me and have only ended up in a never ending pain cycle.

I'm sorry for venting so much, especially my first time on here. I am so unbelievably frustrated and down about this. I have never gotten to speak to someone with PN before and have been dealing with this by myself.
I am married but have almost no support from my hubby. He doesn't want to hear about it and dismisses what i say. He tells me to get over it and that it's not that bad (I'm sure everyone has heard something like this from someone).

I was very lucky in the fact that I had a Total Abdominal Hysterectomy on 12/8/15 and when i woke up, i had no more pain in my pelvic floor at all and this continued until the beginning of July 2016. Unfortunately, I went to bed one and woke up with all of the pain back (just like a light switch) and I've had pain every second of every day since then. Honestly, not that surprised considering they couldn't do anything with the pain before nor did it every disappear except for the surgery.

It seems that most people are here like me and cannot sit for periods of time or at all. I was curious if anybody had back problems from this? A couple years after the PN pain first came in, i had severe back and sciatica pain. I had an MRI 3-4 years ago that showed a bulging disc with a tear at the L5/S1. 3-4 years later I had a 2nd MRI that then showed degenerative arthritis on every level of the lumbar spine in the facet joints as well as scoliosis.

I am very nervous about what the future holds considering I'm only 30 and this has been going on since my early/mid 20's.

I really do not know what started my PN... I have had several falls on my tailbone and was just told that my tailbone points directly to the right instead of straight I also have multiple antibiotic resistant UTI''s which i think might be contributing as well. I've been offered an Interstim for the Uti's but am terrified of it.

I'd really be interested in talking to someone with PN so I can try and straighten out what symptoms are coming from where, as i know have so many symptoms i'm not sure what to blame on what or how to get better from here?

My dr's say I can get SSI, however my hubby doesn't want me to quit working due to the income hit and I really don't know what to do. I'm kinda lost at the moment.

Thanks for listening to me vent, I'm sorry i'm such a complainer. It's miserable to have every part of your daily life affected for so long.

J

[Johan1991]

ChiMommy,

I'm sorry to hear you're going through so much pain on a daily basis without finding much support from your peers. It seems like your symptoms are more severe than mine, and I'm not even sure yet if I have PN. I did find a pelvic floor physical therapist as you advised me to do in my welcome topic, and I hope to find some help for my pain there; thanks for the advice.
What helped me cope with pain so far is ice. Did you try sitting on ice packs by any chance? I've seen multiple people on this forum getting relief from it so I felt like sharing it with you. I can't imagine having the burning feeling 24/7; I only get it when I sit; and it sucks the pleasure of life right out of you. I hope you get better, and find some answers on this forum.

Johan

[Violet M]

Hi J,

It sounds like you have several things going on at once which is often the case with pudendal neuralgia patients. It's OK to vent here and tell your story. That's partly what the forum is for.

It's not uncommon for pudendal neuralgia patients to also have sacroiliac joint dysfunction and some lower back pain but with your scoliosis and degenerative arthritis it seems you have some other things going on. Since you have some musculoskeletal anomalies and some back problems I wonder if there would be any sense in going to a manual therapist who deals with alignment problems -- or has your PT already worked with you on your alignment? Is your pain the same on both sides or is one side worse? I don't know if your pain is generated by something in the peripheral pudendal nerves or is stemming from a radiculopathy in the spine. I think that spinal radiculopathies would be more difficult to treat. Dr. Attaman discusses how to differentiate between PN and spinal radiculopathy in the last question in an interview posted at this link: http://www.pudendalhope.info/node/22 You have to scroll down near the bottom of the page.

You have gone through a lot already at such a young age and I'm sorry to hear your husband isn't more supportive. Hopefully you have some other family members who are supportive. But really, most people don't understand fully unless they've gone through it themselves. There is a letter that was posted that you might find helpful in communicating with family members. It's in this thread: http://www.pudendalhope.info/forum/view ... =25&t=4874

Constipation is something you can mostly avoid if you can get on the right maintenance program and keep your stools the consistency of applesauce. There's a good article in medscape about the different types of treatments for constipation if you google "A Rational Approach to Constipation" and choose the medscape article. Then go to the treatment page. It won't work for me to paste the link here because that just takes you to a login page.

An interstim (neuromodulation) could help urinary retention and I guess in that regard it could be helpful in preventing UTI's. Some people have good success with interstim but you just don't know until you try it. Studies sound promising.
http://www.ncbi.nlm.nih.gov/pubmed/11125353
http://www.ncbi.nlm.nih.gov/pubmed/18242368
Some people have had significant relief fron pain using an interstim also. I think it's important to go to a physician who is experienced in successfully treating people with your type of symptoms. You need to ask them lots of questions until you feel comfortable that they know what they are doing.

I would not have been able to keep working during the worst of my PNE journey. If you can look at it as a temporary situation, maybe it would be good to take the time off to get well. Sometimes your brain gets into a pattern of chronic pain even after everything has healed, and for some people in this situation, the mindbody approach helps. You can read Ezer and Nonsequitur's posts on the topic if you think that is something that might interest you.

Keep fighting and keep searching. I believe you will find the right treatment for you if you keep researching and following your instincts.

Violet

[ChiMommy]

I can't thank you both enough for your replies. Just knowing there are people out there who understand what this is like.

Johan,
I absolutely LOVE ice. It is simply amazing, between the ice and baths, i am able to make it through the day. Thank you for your recommendation!
I truly hope PT helps you.

Violet,
Thank You for being here and giving such detailed advice. Thank you for letting me know I'm not alone.
I have Sacroillitis and SIJD, they pop out and can cause pretty decent pain. I have had multiple bi-lateral SI joint injections, as well as being diagnosed with piriformis syndrome.

Any advice on how I would go about getting all these different issues started on?

Is it really common to have all kinds of different issues going on at once & yet somehow tying into each other?

I'm going to read all the info you posted now.

Thank You Both So Much!

J

[ChiMommy]

Violet,

I didn't answer all your questions, sorry for that.

The pain is both sides but significantly worse on the left, worth the PN, the SIJD as well as Sciatica on the left. I have been to numerous back drs and none know why I have the Sacroiliitis or arthritis/scoliosis.

I honestly believe that without being able to sit straight for years and am always sitting on my side that I have degenerated my back that way, although it's just a theory.

On that note, I also have a tailbone that points directly to the right. Could that be causing issues as well?

The new Pain Management Dr I have just found who is doing bilateral nerve blocks on PN and tailbone only wants to deal with the Pelvic floor problems or back problems.

In all honesty nothing compares to the PN/Pelvic floor pain. So I choose that route.

Are there Drs that treat everything or do I need to continue to go to multiple specialists to treat the different issues?

I have a PT who works on everything and I have been out of alignment on several occasions which she has adjusted.

Going to read now.

[Violet M]

I have Sacroillitis and SIJD, they pop out and can cause pretty decent pain. I have had multiple bi-lateral SI joint injections, as well as being diagnosed with piriformis syndrome.

Any advice on how I would go about getting all these different issues started on?

Is it really common to have all kinds of different issues going on at once & yet somehow tying into each other?

It is common. I have SIJD, chronic ligament strain, and piriformis syndrome that I still have to continue to manage but they are nothing compared to what PNE was. I had pelvic misalignment and the ligaments were impinging on the pudendal nerve. I could not get the pelvis to stay in alignment and PT wasn't helping. My pelvic pain was worse on one side before I had PNE surgery. Having the sacrospinous ligaments cut and some of the falciform process of the sacrotuberous ligament shaved off has reduced my pelvic pain by 90%. I specifically went to Dr. Bautrant because I didn't want to risk having worse pelvic instability by having the ST ligament severed. Also, having prolotherapy has helped stabilize the pelvis some. I only had several of those injections though, because my understanding is that too much prolotherapy can cause scar tissue to form at the injection sites.

I'm not suggesting you go out and have surgery because it's a pretty major decision and not everyone gets better from surgery. You could try some prolotherapy into the sacroiliac ligaments to see if that would help strengthen your ligaments and stabilize your pelvis. There are other conservative things you can try too if you don't want to risk a major surgery -- like PRFA or cryoablation, although like Botox, it is something that may likely have to be repeated, isn't a permanent fix, and results are mixed with some people getting better and a few people getting worse. Some people have had success with electroshock wave therapy from Dr. Krik Andrew in Canada. You can read Konedog4's posts on that topic. Other options I can think of are visceral manipulation, restorative exercise by Katy Bowman, the Barnes method of myofascial release, the Hesch method of manual therapy, or mindbody therapy. You can google these.

Do you know what caused all of your SI and ligament issues? For me I think it was a combination of genetics (bad ligaments) and starting a weightlifting program.

I don't know if your tailbone pain is part of the equation. It could depend on whether it's impinging on any nerves although if your pain is significantly worse on the left it doesn't seem like it would be impinging on any of the nerves going to the left. There are some ligaments attached to the coccyx and if those are stretched out of their normal place I suppose the ligaments could be impinging on a nerve that goes to your left side. http://emedicine.medscape.com/article/3 ... verview#a4

"Multiple important ligaments attach to the coccyx.[2] The anterior and posterior sacrococcygeal ligaments attach the sacrum to the coccyx (similar to the functions of the anterior and posterior longitudinal ligaments spanning cervical, thoracic, and lumbosacral spinal segments). Laterally, the transverse process of the coccyx serves as an attachment site for the lateral sacrococcygeal ligaments (arising from the inferolateral sacrum), as well as for fibers from the sacrospinous ligament (arising laterally from the spine of the ischium) and the sacrotuberous ligament (connecting the sacrum with the ischial tuberosity, but with fibers attaching to the coccyx as well)."

But based on other people's experiences that I've read on the forum, including one guy who had his coccyx removed, just getting the coccyx problem fixed may not be the answer. If you think your coccyx is the issue, you could try a ganglion impar block.

Sorry, I don't know what is the right option for you. Usually I just brainstorm and throw out ideas of different options so people have more information. Just follow your instincts and don't give up until you find what works for you.

Violet

[ChiMommy]

Violet,

I'm really going to try to make a long story as short as possible. The first time everything came in I'm not really sure about.


My back pain started at 16, had pain when standing for a couple hours at work, lumbar back spasms that woke me in the night. It all started when trying to "sway hips" when walking as a teenager, not smart.

The pelvic pain didn't really start till i was 24 at which point it took about 3 years to get the diagnosis of Myofascial pelvic pain.

The second time all the pain came in I paid attention.
I had a TAH (12/8/15) due to Adenomyosis.
I woke up with No pelvic pain from the Tah as a sort of baae comparison I had a cholecystectomy (1/2/15) went to sleep & woke up with the same pain.

My s.I. joints went out in April of 2016, my PCP popped my s.I. joints back in, I continued to have back pain and sharp pain in the outter upper thigh, and it was now running down my tail bone. I got really concerned as this was all the pain back except for the pelvic pain but it kept getting closer.
I also had 2 days where my perineum actually went numb and I got tingling, No pain though.

I had bilateral s.I. joint injections, that helped. I then took a steroid pack. It took all the swelling out of my s.I. joints (at it's worst it looks like a half a tennis ball is covering my whole ). My bladder was completely normal for 1-2 days at the end of the steroid pack.. A week or two later my sciatica started back up.

Fast forward to July I mowed the lawn and vacuumed my couch, which included lots of ssquatting, (I got some sharp pain in my back from that.)

The next morning, it was like somebody had a flipped a light switch, I came out of bed with full blown Pelvic Pain. That was the beginning of July and to this day I still have pain to this day every day.

It certainly seemed to be the last domino of what seemed to start with S.I. Joint issues.

The first time I wish I could point to something. I did take several hard falls with one in particular where I actually feel out of a chair and landed on something directly under me in the seated position. Either that or repetitive microtrauma.

I'm having a difficult time trying to get a Dr to look at both my back problems and pelvic floor problems at once. My new pain management Dr asked me to pick which one I would rather he treat.

[Violet M]

It seems like you should be able to see a physician for your back problems and one for the PN. I'm wondering why you would have to choose and not be able to see both. But it sure sounds like your pelvic pain is related to the SI joints and other pelvic issues since the pain all came back after you did all of that strenuous activity in one day. It is a bit of a puzzle. All I can say is my PNE was very closely related to the SI joint problems and pelvic instability. Good luck getting all of this sorted out.

Violet

[ChiMommy]

Violet,

Thank you so much! You have given me very good ideas. I really appreciate all the brain storming you did for me.

I just got home just over am hour ago from a bilateral pudendal nerve block. I went from a steady 7 to a 4. I am still having flares however they are down from an 8/9 to a 6(so not completely debilitating like before) I only have birthing pain now, no sharp shooting pain and I was able to sit in the recovery room and on my way home.

I feel like the burning is slowly starting to increase, however that was the first time I've sat down since July and I say for a good 45-60 min.

I'm excited that the numbing medication has worked well. Can't wait for the steroids to kick in!

Today is a very Day!

J

[Violet M]

Hi J,

Glad to hear the nerve block is helping and hopefully the steroid will help even more. I had some relief for about a month from the first two blocks I had. The third one actually gave me a flare-up. It was in the Alcock's canal but the first two were at the ischial spine. So if the relief is short-lived or if you have a flare-up please don't get too discouraged. At least maybe this will help you solve more pieces of the puzzle in figuring out your diagnosis. Some people do get more long term relief from nerve blocks and I hope you are one of them.

Violet