Health Organization for Pudendal Education

Hi! I just joined and am thankful this site is here. I have been searching for answers for 16 months with 8 different doctors. A few of the doctors treated me for a yeast infection and didn't know what else to do while a few others thought for sure they could help me but kept saying it will take time to figure this out. I finally found a dr who told me I have pudendal neuralgia and he put me on medication and told me all the things I am not supposed to do. But how long will it take for me to feel better. I have had continuous pain burning and itching for almost the entire 16 months! I have had no life and am just trying to hang in one more day. I have a wonderful husband but just got this diagnosis last week and am trying to figure out how to adjust. Thankfully I just had a week off work but go back tomorrow.

Thank you for any comments!
Penny

Hi Penny,

Welcome to the HOPE forum.

You've asked a really tough question because the answer isn't the same for everyone. It will depend on how effective your treatments are and how much nerve damage there is. Sounds like you are trying conservative treatments right now -- medications and lifestyle changes. Are you planning any other treatments such as trying physical therapy with a PT who specializes in pudendal neuralgia?

It can be pretty daunting to become educated on all of the treatment options available, especially since there are so many posts on the forum to wade through. Your treatment plan will depend to some extent on what your history is and exactly where your pain is. I hope you will find some valuable information here.

Best,

Violet

Hi Penny,

Sorry to say, avoiding certain activities and taking medication are things that mask the symptoms of pelvic pain. If the treatment plan works you might feel somewhat better within a few weeks, but all that means is that you have some strategies in place to cope with a chronic condition. None of what you have been told will cure you.
If you want this to go away, you will have to put in a lot of time researching and finding good health care providers and appropriate diagnostic testing, to find the underlying cause of your pain. That can be different for everybody. A good place to start looking is, do you know what brought this on in the 1st place? did you have a physical injury such as a fall, childbirth, surgical procedure in the pelvic region, history of any other chronic illness such as endometriosis, etc? Any event or cndition you think of that could be linked to the onset of this, might be significant.
If you haven't seen a PT, there is a link on the left side of the home page of this site, to a list of PT providers. A PT exam is different than a medical exam and might give you more information about the underlying cause. Also talk to the doctor who diagnosed you, about what kind of testing you can pursue.
I hope you do feel better soon, but nothing the doctor has done for you yet can actually fix the problem.

Thank you Violet and Hermajesty,

I was so happy to finally find this Dr. But just want to feel better. I really don't know why all of this started. 16 months ago I was exercising a lot trying to lose weight and it was a few months after that when all of this started. I also read somewhere that Irritable Bowel Syndrome can be a cause and I have had that forever but have not had the symptoms for around 2-3 years. I also have one leg that is longer than the other and am wondering if this could be effecting me. I think I will try to see a podiatrist and maybe get a lift for my shoe but don't know how that will work when I can barely use arch supports in some of my shoes.

I am relieved to at least get a diagnosis but it sounds like it is a rare and unknown thing for even doctors. I guess taking it one day at a time will stay my mantra for a while longer.

Oh and yes this is daunting. I don't understand half of what I've read tonight!!! But I will learn. The PT scares me as my last Dr gave me what she called physical manipulation. This was before I was diagnosed with pudendal neuralgia and I think she was actually rubbing my pudendal nerve. Found that out later with my diagnosis. I finally told her to stop as it didn't help me feel better and seemed to aggravate things more for several days. She said it did help because things there were not as tight. Ooh, I didn't mention that sex and tampons have been a thing of the past for me. Can't do either anymore. Even trying Gladrags when I get my period again as that week I am in extreme pain.

Again, so glad for this site!

Hi penny,
Sorry that you have had to seek us out here but very glad that you did.
From what you have mentioned, it sounds as if you may have tight pelvic floor muscles. This may be due to a number of reasons.One being leg length discrepancy, although general posture , gait or holding stress in this area can be responsible too, sometimes a combo.
Is your leg length discrepancy due to a sacroiliac, misalignment problem? If so fixing that with a good physiotherapist could help.
It is a question of working through the therapies usually starting with physiotherapy (and medication) using your mantra
Unfortunately a few people report having more pain after a physio session. However with your own feed back things should hopefully improve with time. As you mentioned the extra pain from that therapy did eventually abate. However, if there is absolutely no improvement after 6 -8 sessions (6 really in my opinion, depending on how difficult it has been for the physiotherapist to work your problem out) give up, perhaps try someone else?? The PT's feedback will be of value however too, as they will be able to tell which muscles are tight.
What medication are you taking btw? Is it helping ? is the real question
Take care,
Helen

Welcome, to the forum. It is a daunting task at first to get educated. Sounds like you have some things to investigate to get this under control. Finding good dr.'s and therapists are key and it can take a while to find one's that you like and are any good. Took me 3 years to find a good pelvic floor PT. My first experience with one was horrible and the I spent the next 2 years asking female friends who they went to. Who I see now is fantastic and extremely knowledgeable. I've been going to her on and off over 2 years.

Finding a good gentle chiropractor can be helpful. Sometimes there some overlap with PT ie the leg length difference or uneven pelvis that they both may treat. Just make sure you find a good chiro. I went through a couple of them before I found one that was really willing to learn how to best treat me. You might want to find a chiro that does cold laser therapy as I have found they helpful. Unfortunately, insurance doesn't usually pay for cold laser treatments so you may want to try that at a later date if the other therapies don't help.

The others who have already responded always have such wonderful words of wisdom. Keep in touch and let us know how things are going.

It does sound like a PT issue and possibly a sports / excercise injury - meaning that while you might certainly get benefit from seeing one of the Pelvic Floor PT providers listed here, you might also get a lot of benefit from seeing a Sports PT about the leg length discrepancy. Unless you know it to be a true leg length discrepancy (femurs x-rayed and one measures longer than the other), one leg might just project further downward due to an injury which disrupts pelvic alignment. I had a 1.5 inch "leg length discrepancy" due to pelvic misalignment, whereas my femurs are of equal length. The "buzzword" for this kind of injury is SIJD, Sacroiliac Joint Dysfunction.
If this is an excercise injury, a Sports PT or a PT Manual Therapist might be more proficient than many of the Pelvic Floor PT's at manipulating joints. However in the meantime, you probably do have tight pelvic muscles, especially with the IBS history, and the Pelvic Floor PT has potential to make you much more comfortable.
You probably noticed I am naming various specialties but keep saying PT, PT, PT. Actually, a few people have found good Chiropractors, and a few people have found bad PT's. What I am really hoping you avoid, is any high-velocity manipulation: That is, if your pelvis is misaligned, DO NOT allow any practitioner to adjust it with the fast, rough, "twist n crack" method. Not all Chiropractors treat the pelvis this way, but as a group they tend to be known for high velocity manipulation which is a red flag. Some PT's use high velocity manipulation too though. There are people on this board that have been injured by both professions. The most important thing is, when it comes to joint manipulation, do not be afraid to ask questions first and to say "no" to anything rough. Joint injury should be treated with stretches or with hands-on manipulation that incorporates gentle, sustained pressure.

Thank you Helen, nyt, and Hermajesty (again),

I didn't think I would cry today but did after reading your posts. I am relieved that all of you are so willing to share and help people you don't know. I am saddened that SO many people are going through similar things and have so much more knowledge than the doctors I have met. I understand it is a specialty but no one even knew enough to refer me to the correct person. Finally a referral of a referral sent me to this Dr. And maybe he isn't telling me everything I need to do!?

I don't know about the rest of you but I have suffered in silence only letting a few of my closest family members and friends know I have been in pain and hurting. Still not sure how I am going to deal with this at work when people see my cushion or grabbers, etc. I find this a bit embarrassing to talk about in person and don't want to cry in front of people.

Can't remember who asked but I did trying taking Cymbalta but it upset my stomach. I have been taking amitriptyline 12.5 mg for a week now and increase tonight to 25mg. I have to take it right after dinner as it makes me woozy almost within the hour and in the morning if I take it too late. I have to increase slowly each week.

Again, thank you everyone who posted. Will be rereading these to learn more. (While standing up of course!)

Penny

If the amitriptyline is going to help, it often takes a few weeks (and the gradual step-up to higher doses) to kick in. Doctors can be very paternal; and likely he is trying the most conservative treatment first, withholding information to give you on an "as neeeded" basis if you continue to have trouble. They also do have a different skill set from PT's - the PT usually also has a Doctorate, but a totally different type of training - so you do need to consult both.
One other thing I want to mention regarding excercise injuries: If the doctor has made a diagnosis based on your symptoms (neurologic pain in the vaginal / vulvar / clitoral area), he might be incorrect about the pudendal nerve as the source. the nerves in the inguinal canal send signals to the same area, and some of the people on this board who thought they had a pudendal problem, really had an inguinal hernia pushing on those nerves. Some of the hernias had to be detected by dynamic ultrasound because they were small, but they still caused pelvic pain. You should ask your doctor if he ruled out this possibility, since hernia is also a common excercise injury.
As far as explaining at work, the whole genital thing can feel very humiliating to disclose. I usually circumvent it by saying I have neuropathy. If they ask what that is, say it's nerve damage or faulty signals to the nerves, and you are trying to figure out the source but think it might be an injury. If they get really nosey and want to know where you hurt (most people don't, by this time they have convinced themselves it is your back or legs), just say "the pelvic area, it hurts to sit which is why I use a cushion". I don't think anyone has ever been rude enough to ask more detail than that, but I have had a few situations (like when I was going for the PNMLT and somebody wanted to know how the test worked), when I just said, "believe me, you don't want to know and I don't want to share". In other words, you can almost always deflect with general answers. Most everybody knows I have a chronic pain issue but almost nobody in my personal life (except my husband, health care providers, other patients) knows where I hurt. It's not their business. So you don't have to suffer in silence and you don't have to disclose all: it is possible to get some empathy and keep some privacy at the same time.
I'm sorry to hear you are having a tough time with this emotionally. I've had a chronic pain disorder since age 14 so it's pretty hard for me to remember the mental shock I got when I first realized my condition was not going to just go away like the flu. But I can tell you it gets better. You will either find a cure, or find lifestyle changes which will make you significantly more comfortable than you are now. It won't always be like this. I'm 41 now and have had a great life, never been kept down for long.

Hi Penny,
You certainly only need to say as much or little as you want as the others have said. I went more the full disclosure way but everyone just goes to saying "back pain" because they are more comfortable than pelvic nerve pain. I did it as an attempt to educate in the off chancesomeone they know has a similar issue. In one case I may have helped which is what I hoped. Everyone has their own way and no way is wrong. My family and friends and co- workers all support me. I think all the more after some visited this site.. when my brother died in Noveber I asked that donations from work go to this website as especially there was a recent but rare suicide posted to HOPE may have been due to the lack of knowledge of this ailment. Take it slow try to focus on your treatment on step a atime we are here for you! FYI I had PNE surgeryand almost two yearsater am having a major relief to get off medications and maybea better success to post. We can get better and not everyone needs surgery or hssPNE but you have to traverse a bit through things to rigure out your path.
Janet