Combined Treatment That Works For Me

[shawnmellis]

Hi, This is meant to help people who have gone through a lot of things I have already had to go through the hard way to learn. This describes the treatment for me which has helped me whenever my symptoms of pelvic floor dysfunction, urinary frequency, perineum pain, hyperarousal, pain in your genital area, urinary hesitancy get bad to improve and get better. My perineum pain though itself will never totally get better until after surgery since I have had this for 1 1/2 years. You should always consult your doctor before taking any medication or diet changes. I now know from experience a lot about how to improve my symptoms when I have times when my symptoms are worse, usually after doing a lot of bending over, or heavy lifting, sex, climbing, driving, doing yard work, sitting, or anything activity that puts a lot of pressure on the pelvic floor muscles. Hope this helps anybody and my advice is no substitute for trying to find a good doctor by calling around in your area who is familiar with Pudendal Nerve Entrapment such as Orthopedic Doctors, PNE specialists, gynecologists, Urologists,Sports Medicine Doctors because they see a lot of it from bicycle related injuries of the perineum and will more likely be able to help you and believe you than most other doctors unless you happen to find a PN specialist in your area which is rare.

There are many doctors out there familiar with IC and some familiar with Pelvic Floor Dysfunction, but not too many with Pudendal Neuralgia or Pudendal Nerve Entrapment. If you have overactive bladder, problems passing stools, urinary frequency, pain in your genitals, bladder pain, urinary urgency, hyperarousal, pelvic floor dysfunction, and most importantly a burning or sharp pain in the perineum (area of pelvic floor between rectum and genitals) made worse when sitting, it is usually caused by pudendal nerve problems such as pudendal neruralgia or pudendal nerve entrapment. You may not have all of these symptoms but the main one is pain in the perineum which is the area of your pelvic floor in between your rectum and your genital area. The best way to know if you have PNE is to have a pudendal nerve block test done by a trained radiologist who has done them before and ruling everything else out with other tests. Cat Scan guided is the best kind but if they have experience doing it then Fluroscopy/XRay is another way.

The treatment I use is diazepam (valium twice a day 5mg per dose) and Tramadol 10mg twice a day for pain, but some people use valium suppositories in combination with other medication such as Lyrica instead of Tramadol for pain. If you have urinary urgency, and the only medications the are giving you are oab medications and not medications to help relax your pelvic floor muscles like diazepam, you may or may not see much improvement, and may not improve much until you treat the underlying cause being tight and tense pelvic floor muscles that are spasming caused by inflammation or irritation of your pudendal nerve because it is compressed or entrapped, so you should try to find a urologist trained on Pelvic Floor Dysfunction and familiar with Diazepam to help you. There are not a ton of urologists who are trained on Pelvic Floor Dysfunction, so you may have to travel an hour away and ask your current urologist if he knows of any specializing in that area.

I saw a great pelvic floor dysfunction urologist who is familiar with pelvic floor dysfunction, caused by my PNE, which in turn causes my overactive bladder, but there are other urologists familiar with Pelvic Floor Dysfunction across the U.S. You just have to find them. Unfortunately he was not too familiar with PNE, but was familiar with pelvic floor dysfunction, which by treating this helps a lot in treating PNE symptoms. He was able to treat this symptom of PNE with diazepam (valium) which relaxes your pelvic floor.I have tried Skelaxin another muscle relaxer but did not work at all for me like Diazepam(Valium) did for my urinary urgency and pain to improve.

How PNE or Pudendal Neuralgia Causes Bladder, Urinary Problems, Problems Passing Stools, and Pelvic Floor Dysfunction:
Basically when you have pudendal neuralgia or PNE your pelvic floor muscles get tight, especially when you get in a bad cycle of peeing a lot. In order to break this cycle I have to do these things. 1. I take Diazepam twice a day 5mg each, and sometimes 10mg each if your problem is severe 2. For my urinary frequency, hesitation problems, I also do bladder training. I drink small amounts each time each day every 3 or 5 hours about 5 ounces each time, for a total of 3 to 4 cups of water a day and don't let yourself get dehydrated by going outside in the heat which will require more of you to drink. After 2 to 4 weeks of this you will start to get your bladder stronger and be able to drink more because your nerves, pelvic floor muscles, and bladder which are all connected together because your bladder is held in place by your pelvic floor muscles kind of like a sling holds a baby. When your floor muscles are tight it causes your floor muscles to spasm which makes your bladder also spasm and hurt because it is weak which causes you to have an urge to urinate more frequently. You should try to discuss this with a urologist trained in pelvic floor dysfunction and trained on bladder training or you can also google bladder training on webmd. Also make sure you eat fiber one bran cereal or other all bran cereal in the morning, and occasional prune juice and Pro biotics are okay. They will also help relieve some of the constipation effects of some pain medications. Being constipated will also make your PNE symptoms worse because your bowel is right there next to your bladder pressing on it, so if you have hard stools that are not passing it will press more on your bladder. Miralax is also okay to use if you have severe constipation. If you do not have any urinary problems but only passing stool problems then it is okay for you to drink more than 3 or 4 cups a day and may be beneficial to actually increase your water intake to at least 5 to 8 cups of water a day can cut out caffeine or other diuretic drinks or foods. Also, until things improve drink nothing but water until your problems improve because some things like orange juice, soda, caffeine, alcohol can irritate your bladder to make things worse.

How I make it better when my symptoms and pain get worse or come back and what to avoid doing to make symptoms improve:
I have reinjured my pudendal nerve 3 times over the past year and a half and I have experience in getting my bladder, pelvic floor, pain, urinary urgency and everything back to working order again. I still of course have pain in my perineum but my urinary problems are much better. If you have severly reinjured your area and you have a pain level of 8 to 10 out of 10, then you may want to consider getting another pudendal nerve block and seeing a doctor right away. Applying ice packs (or 4 ice cubes in a zip lock back with a little water) for 5 to 10 minutes not directly to your skin twice a day to the area of your peineum which hurts if it is very painful, will help reduce inflammation and pain, and also ibuprofen will help with that. Make sure your medication does not conflict with any current medications you take or any other illnesses you have by talking about this with your . At the same time, if you are able to and it helps taking a warm bath once a day will help relax your pelic floor muscles. I also have to make sure to not sit down very long bend over very, avoid climbing, avoid having sex, or any other activity that heavily uses the pelvic floor muscles for at least 2 or 3 weeks until thing improve because it causes your pelvic floor muscles to tighten and other things because it will irritate your pudendal nerve and make it harder and take longer to heal during this time.Also I make sure you eat fiber one bran cereal or other all bran cereal in the morning, and occasional prune juice and Pro biotics are okay. They will also help relieve some of the constipation effects of some pain medications. Being constipated will also make your PNE symptoms worse because your bowel is right there next to your bladder pressing on it, so if you have hard stools that are not passing it will press more on your bladder. Miralax is also okay to use if you have severe constipation. If you do not have any urinary problems but only passing stool problems then it is okay for you to drink more than 3 or 4 cups a day and may be beneficial to actually increase your water intake to at least 5 to 8 cups of water a day can cut out caffeine or other diuretic drinks or foods. Also, until things improve drink nothing but water until your problems improve because some things like orange juice, soda, caffeine, alcohol can irritate your bladder to make things worse. You can also once things improve enough do some light walking if you are able to, which helps get blood flowing to your pudendal nerve and pelvic floor to promote healing. Do not lift weights, lift heavy things, bend over too much, or do any types physical therapy which aggravates your pelvic floor muscles and nerves more and prevents healing. Some Physical Therapists who are specially trained in PNE may be able to help but you have to be careful in selecting them and what you do. Personally, it has not helped me, but all of the other things I mentioned has, but I am not saying it can not help you or others,

Conclusion:
PNE can be caused by many things and may come on without you even knowing what caused it. Hysterectomy, child birth, urinary infection, or trauma to that area down there are some causes. As you can see it is complex, and involves doing multiple things, and maybe 5 percent of doctors who are actually familiar with PNE or PN and even Pelvic Floor dysfunction understand this. If you have been diagnosed with PN or PNE and especially with a nerve block you must do oall of these things to get better. Even if you just have OAB caused by IC, you can also probably get better doing some of the things I mentioned. I have tried OAB medication in the past and they never worked for me, although they may work for you, because for me, they did not treat the underlying problem causing the overactive bladder for it to get better and not just try to treat the symptoms so it continued until I was prescribed a muscle relaxer. For most of us, our pain in the perineum caused by an entrapped nerve will not totally get better if we have had this for over 1 year unless we have surgery for it. So, you should see Dr Hibner in Phoenix Arizona or Dr Bautraunt in France for this. If your pain is only in your genital area or upper perineum area (Dorsal branch of the perineum) and you have no rectal pain or problems, then you will want to see Dr Lee Dellon in Baltimore MD, because his is the only surgeon in the U.S. for this, or email or talk to Dr. Aszmann in Austria on the phone. To learn more about this and other different nerve causes of pelvic pain and urinary problems please got to Dr Lee Dellon (Peripheral Nerve Surgeon from Johns Hopkins Hospital) at the following link at http://dellon.com/ps/chapter12.pdf Please consult the correct doctors to discuss your treatment and get the appropriate tests done. This is only my advice and does not replace seeing a trained doctor who can help you, and who is familiar with all your current medications and medical conditions.

There are some other medical conditions that mimick PNE such as Piriformis Syndrome or Sacroiliac Joint Dysfunction or compression of the Cluneal Nerve in Your buttock, but typically with these you do not have pain in the area of your perineum(area of your pelvic floor between your rectum and your genitals) With Piriformis Syndrome and Sacroiliac Joint Dysfunction you may have sciatic pain that radiates down your thigh and leg. With Cluneal Nerve Entrapment you may have pain on your sitting bone or outter buttock area but not in your perineum. Also, remember that everyone is different, so we may all have different medical problems, different medications, and different things that work for them, but these are things which have worked for me with my problems of pain in the upper perineum, urinary frequency, urinary hesitancy, and pelvic floor dysfunction. You should see a urologist,PE doctor,gynecologist, orthopedic doctor,orthopedic surgeon or sports medicine doctor for proper treatment, and this information is only from my experience and does not substitute for talking with your doctors and specialists regarding treatment.

[DakotaGirl]

It seems like in conclusion that perineum pain equals entrapment and isnt helped by any conservative methods only surgery?
That's a tough pill to swallow. Very discouraging.

[stephanies]

While it is great that Shawn shared his experience and wants to help others, these are only his ideas, not fact. You are reading his opinion. Perineum pain does not mean that your nerve is definitely entrapped and that you need surgery. He did not mention any sources for that information and I know of no doctor who has made that claim. You should not be discouraged.Take one step at a time, do your own research, see your chosen doctors or professionals, and draw your own conclusions about what is going on in your body.

Stephanies

[DakotaGirl]

Thank you for clarifying that Stephanie. Because I am unable to find answers for myself and have already been through the whole gamut of providers etc as the rest of you have, I don't know what to do. I scour the forum looking for help.
My Right buttock has such pain,my right Lower back is severely stuck and stiff from degenerative arthritis. I also have the torn labrum which they feel a repair would be unsuccessful with my age/along with the Conway emg showing PN.
Even he didn't know what or where it was affected. He said get injections. I don't dare.
Every single person, internal pt, ortho pt, hip surgeon, pain management dr and physiatrists all say it's too complicated to isolate the pain generator.
That makes me want to give up. How can no one really know anything? I keep getting told , well if this bothers you stop doing it. In other words crawl into bed and die? I walked around the block last night with my grandaughter and today I have been in severe pain since 5 am.
I can't wrap my head around that fact that no physical activity like stretching or walking or pelvic exercises could help me get stronger, only worse.
I do appreciate your feedback. It's also frustrating to read the forum and see so many posts that you would like to know how they made out but you try to find their follow up and they are gone. Since I have found solace here I will post whatever I find or don't find. I have read your bio and don't know how you manage to keep positive and hold down a life. Thanks again Stephane. DakotaGirl

[Carlie]

Hi, Ever consider having a second opinion? It never hurts. You are not very far from Hibner in Phoenix, and a consult is just that, a consult. I am sure he would want a physical by Loretta and some x-rays and any and all records sent to him to review what was done/the problems. My bones ache also for I am no spring chicken, but I am taking tylenol for the pain and the PNE pain also. That's it. I will boil under a shower first. I get a botox injection in the pelvic floor every three months to settle the it down so I will not be incontinent (rectal) and it works like a charm. I hope to see Hibner on my case and see what if anything can be done. They have made so many advances in the last ten years it is unreal. I know HIbner works with the Barrow Clinic in pain management and they do wonders. He has to be familiar with your case in order to prescribe what may help, and Barrow does most of the rest. Those people are really smart. They are the best for people like us. Read about them. Hibner works closely with them. They are on the cutting edge of medicine when it comes to pain control. You always wanted to go south in the spring, didn't you? Keep your chin up and stay warm.