Health Organization for Pudendal Education

Hi so I'm a 20 year old woman, never been sexually active because my issues started at age 16.
Back story:

when I was 16 I had a suspected bartholin gland cyst cut and drained and had a catheter put into the area they cut. Basically my literal vagina was cut into in the emergency room. I've had chronic vaginal and rectal pain since then and I'm 20 now, so its been almost 4 years. It has gotten worse every year with new and worsening symptoms and in the past 8 months its gotten to a scary point for me.

Symptoms:
In the past 8 months things have gotten worse. I have crawling sensations from my clitoris all the way to my rectum, a feeling of vibrations throughout my entire pelvic floor, twitching, and more and more pain. Burning pain and sharp pain. Pressure and odd sensations throughout my entire genital region. I also have some nerve related vibrations in my legs. My symptoms are not constant, I have times with zero symptoms but I have symptoms everyday. The clitoral symptoms are the most terrifying thing to me because I'm afraid I'm going to develop PGAD. I don't think I can handle much more.

Question: I'm going to pelvic physical therapy and the therapist thinks the pudendal nerve is involved but hasn't said I have pudendal neuralgia. I literally have no diagnosis of anything other than pelvic floor dysfunction and things like vulvodynia and lichen sclerosis have been brought up but I've never been diagnosed. I'm honestly terrified and feel like I have no future ahead of me because of this. Everything I've read about it online is not very hopeful and I understand why, having these problems make you feel hopeless. The fact that I have made zero improvements and continue to get worse literally week by week for the past 4 years doesnt make sense to me and nothing is helping. What should I do? Does this sound like pudendal neuralgia even though my symptoms are shifting and not constant? I also havent noticed sitting makes me feel worse.

Hello,

I am sorry you are dealing with so much pain. When I first developed pudendal pain many years ago, I ended up at my regular gynecologist first. During her exam, she pressed on one spot and I nearly jumped off the table. She told me where she pressed was the Bartholin’s Gland. This led her to misdiagnose me with an infection of the gland and a she gave me a month long prescription of antibiotics that did not help. When I finally found my way to a pelvic pain specialist, he told me that the nerve runs very close to the Bartholin’s Glands. I think it is possible that your surgery affected your nerve in some way, especially since your pain is in the distribution of the nerve. However, I would also consider maybe something going higher on the nerve or even at the spine that could be contributing to why you have this pain. I write this because the Bartholin’s Gland is in the distal part of the nerve, the vulva, and since your pain is also in the rectum (higher on the nerve) as well as the vagina and clitoris, there might be something else going on as well. I think sometimes it can take multiple triggers for nerve pain to begin. If PT is not helping, then maybe considering stopping. Can you see a pelvic pain specialist or maybe have a pelvic/sacral MRI?

Stephanies

stephanies wrote:Hello,

I am sorry you are dealing with so much pain. When I first developed pudendal pain many years ago, I ended up at my regular gynecologist first. During her exam, she pressed on one spot and I nearly jumped off the table. She told me where she pressed was the Bartholin’s Gland. This led her to misdiagnose me with an infection of the gland and a she gave me a month long prescription of antibiotics that did not help. When I finally found my way to a pelvic pain specialist, he told me that the nerve runs very close to the Bartholin’s Glands. I think it is possible that your surgery affected your nerve in some way, especially since your pain is in the distribution of the nerve. However, I would also consider maybe something going higher on the nerve or even at the spine that could be contributing to why you have this pain. I write this because the Bartholin’s Gland is in the distal part of the nerve, the vulva, and since your pain is also in the rectum (higher on the nerve) as well as the vagina and clitoris, there might be something else going on as well. I think sometimes it can take multiple triggers for nerve pain to begin. If PT is not helping, then maybe considering stopping. Can you see a pelvic pain specialist or maybe have a pelvic/sacral MRI?

Stephanies

I got a pelvic mri recently and the results came back normal and I'm seeing the only pelvic specialist my insurance will cover and all she can really do is point me to/ get me referrals to other doctors. My pt is saying I should go see irwin Goldstein but I'm afraid to spend money on it if hes just going to give me medication and not really help me figure out what's going on. I've read terrible reviews of his. Thank you for that information, after the surgery my pain was vaginal pain right where they cut me and occasionally rectal pain and it has since spread everywhere so it's very confusing to me and the doctors I see. No one seems to know what's going on exactly. Thank you for responding.

A good pelvic floor PT should be able press along the course of the pudendal nerve at the ischial spine and along Alcock's canal between the obturator internus and the levator ani muscles and determine if you have tenderness at those spots. If your pain is along the course of the nerve, then you have to be suspicious of pudendal neuralgia. If you have pain primarily on one side, that would also be significant in the diagnosis of pudendal neuralgia. Also, the fact that your symptoms are in the distribution area of the pudendal nerve is highly significant in the diagnosis. But hopefully your doctor and PT will be able to sort this out for you. It is very common for the symptoms of PN to shift around a bit. I wouldn't put too much stock in a diagnosis of vulvodynia. It literally means pain in the vulva -- which you already know you have. The question is, what is causing it? Even a diagnosis of pudendal neuralgia doesn't tell you what the root cause is. You will have to be a detective and use your instincts to figure out the root cause. History plays a big role in determining the root cause. If you already had pain before the bartholin's cyst procedure I have to agree with Stephanie that there may have been a misdiagnosis. If the procedure is what started your pain, the question becomes, is the nerve itself damaged, or is the nerve encased in scar tissue? If the nerve is encased in scar tissue you may need to pursue treatments that will help break up the scar tissue. If the nerve was damaged, then you would want to pursue treatments that would help the nerve heal. I don't know what treatments Dr. Goldstein provides. Can you ask your PT what Dr. Goldstein does and then use your judgement to determine if any of the treatments are likely to address what you think the root cause is? If he doesn't, you may want to consider a different provider.

You also have to consider whether you have some genetic predisposition to developing pain in that area -- such as tight ligaments that could be compressing the nerve. This wouldn't necessarily show up on an MRI. But it would most likely be painful when the PT presses on the ischial spine via a pelvic exam or in the Alcock's canal if the problem is at the falciform process of the sacrotuberous ligament. If you had pain before the cyst procedure and you have other things in your history such as heavy exercise or previous injuries, you need to take that into consideration too.

If you have a good response to pelvic floor PT then it might be that you just have gotten into a cycle of pelvic floor muscle spasms irritating the pelvic nerves as a result of the surgical procedure that was done and that hopefully PT will relieve the symptoms over time. I don't know how many sessions you have already tried and what your response to them was. If PT seems to help the symptoms some, it might be worth pursuing it for a bit, but if it is making the symptoms worse or not helping at all, it might just be a waste of time. I think the important thing right now is to become a detective in figuring out the root cause and addressing that because you are young and you have a good chance to heal. Sometimes that requires getting more than one opinion, even if it means traveling out of state.

Violet

Violet M wrote:A good pelvic floor PT should be able press along the course of the pudendal nerve at the ischial spine and along Alcock's canal between the obturator internus and the levator ani muscles and determine if you have tenderness at those spots. If your pain is along the course of the nerve, then you have to be suspicious of pudendal neuralgia. If you have pain primarily on one side, that would also be significant in the diagnosis of pudendal neuralgia. Also, the fact that your symptoms are in the distribution area of the pudendal nerve is highly significant in the diagnosis. But hopefully your doctor and PT will be able to sort this out for you. It is very common for the symptoms of PN to shift around a bit. I wouldn't put too much stock in a diagnosis of vulvodynia. It literally means pain in the vulva -- which you already know you have. The question is, what is causing it? Even a diagnosis of pudendal neuralgia doesn't tell you what the root cause is. You will have to be a detective and use your instincts to figure out the root cause. History plays a big role in determining the root cause. If you already had pain before the bartholin's cyst procedure I have to agree with Stephanie that there may have been a misdiagnosis. If the procedure is what started your pain, the question becomes, is the nerve itself damaged, or is the nerve encased in scar tissue? If the nerve is encased in scar tissue you may need to pursue treatments that will help break up the scar tissue. If the nerve was damaged, then you would want to pursue treatments that would help the nerve heal. I don't know what treatments Dr. Goldstein provides. Can you ask your PT what Dr. Goldstein does and then use your judgement to determine if any of the treatments are likely to address what you think the root cause is? If he doesn't, you may want to consider a different provider.

You also have to consider whether you have some genetic predisposition to developing pain in that area -- such as tight ligaments that could be compressing the nerve. This wouldn't necessarily show up on an MRI. But it would most likely be painful when the PT presses on the ischial spine via a pelvic exam or in the Alcock's canal if the problem is at the falciform process of the sacrotuberous ligament. If you had pain before the cyst procedure and you have other things in your history such as heavy exercise or previous injuries, you need to take that into consideration too.

If you have a good response to pelvic floor PT then it might be that you just have gotten into a cycle of pelvic floor muscle spasms irritating the pelvic nerves as a result of the surgical procedure that was done and that hopefully PT will relieve the symptoms over time. I don't know how many sessions you have already tried and what your response to them was. If PT seems to help the symptoms some, it might be worth pursuing it for a bit, but if it is making the symptoms worse or not helping at all, it might just be a waste of time. I think the important thing right now is to become a detective in figuring out the root cause and addressing that because you are young and you have a good chance to heal. Sometimes that requires getting more than one opinion, even if it means traveling out of state.

Violet

I never had any pain before the surgery, I didnt even have pain from the cyst, I only knew it was there because I felt a lump. I started having pain right after the surgery in my vagina on one side and rectum on both sides. As months went by I mostly had pain on the right side vaginally but it spread everywhere, now I have pain and the crawling/buzzing symptoms pretty equally on both sides, it feels almost completely centered down the middle actually.

My physical therapist said that this couldn't have started from the bartholin surgery and I asked why and she said because the nerve is higher up than that, which I dont understand because according to everything I've read the bartholin gland and pudendal nerve are very close to each other so to me is seems very possible. I remember when they cut into me I had the most horrible pain even with all the numbing they used. I nearly screamed.

Physical therapy has helped with my tensing and clenching of my pelvic floor, its helped me to better be able to relax which is a huge issue for me,but it hasn't helped my symptoms of pain or the crawling sensations.

It's hard for me to get to a root cause because everyone I Talk to says something different. I know that in my head what caused this is the surgery, but i obviously can't prove that. And even if it did cause it, I still dont know why it caused it or how I can help it get better or even what the problem is. I was just prescribed a hormone cream to apply to my vagina, which if I have a hormone problem then that's great (we dont know if i have a hormone problem so why am I supposed to use this?). ... I also have symptoms of vestibulodynia, provoked pain on the vestibule, can that be related to pudendal neuralgia? Or does pn only cause pain on the labia and not the vestibule?

The main branch of the pudendal nerve may be higher up than the bartholin's glands but at some point the smaller branches and nerve fibers would extend close to the bartholin's glands. The pudendal nerve innervates the saddle area, including the perineum, external genitalia, and lower 1/3 of the vagina. So, I believe that PN could be a cause of vestibulodyna. If you could feel the cyst via the vagina before surgery it seems to me like your assessment of the root cause of your pain being related to the surgery makes sense.

My experience was that my pain started in one small area but eventually spread through the entire pelvis. Over time there is cross talk between the nerves and increasing spasm of muscles throughout the pelvis. You can also develop hypersensitivity due to central sensitization.

When I was seeking treatment, I had doctors tell me lots of different things. I just had to follow my instincts and pursue the treatments that made sense based on my history, symptoms, and clinical exam. That included traveling out of state and eventually out of the country to a PN doctor. Have you had a chance to see any of the PN doctors yet?

Violet

auburn99 wrote:Hi so I'm a 20 year old woman, never been sexually active because my issues started at age 16.
Back story:

when I was 16 I had a suspected bartholin gland cyst cut and drained and had a catheter put into the area they cut. Basically my literal vagina was cut into in the emergency room. I've had chronic vaginal and rectal pain since then and I'm 20 now, so its been almost 4 years. It has gotten worse every year with new and worsening symptoms and in the past 8 months its gotten to a scary point for me.

Symptoms:
In the past 8 months things have gotten worse. I have crawling sensations from my clitoris all the way to my rectum, a feeling of vibrations throughout my entire pelvic floor, twitching, and more and more pain. Burning pain and sharp pain. Pressure and odd sensations throughout my entire genital region. I also have some nerve related vibrations in my legs. My symptoms are not constant, I have times with zero symptoms but I have symptoms everyday. The clitoral symptoms are the most terrifying thing to me because I'm afraid I'm going to develop PGAD. I don't think I can handle much more.

Question: I'm going to pelvic physical therapy and the therapist thinks the pudendal nerve is involved but hasn't said I have pudendal neuralgia. I literally have no diagnosis of anything other than pelvic floor dysfunction and things like vulvodynia and lichen sclerosis have been brought up but I've never been diagnosed. I'm honestly terrified and feel like I have no future ahead of me because of this. Everything I've read about it online is not very hopeful and I understand why, having these problems make you feel hopeless. The fact that I have made zero improvements and continue to get worse literally week by week for the past 4 years doesnt make sense to me and nothing is helping. What should I do? Does this sound like pudendal neuralgia even though my symptoms are shifting and not constant? I also havent noticed sitting makes me feel worse.

It's like I've found my long missing half-sister. We have the same issues.
I have the same symptoms and potentially the same trigger as you. Bartholing glands, as Violet says above, are in fact in the distribution of the pudendal nerve.
However, vulvodynia and pudendal neuralgia have very similar treatments so try not to focus too much on the diagnosis.

First of all, what medication are you taking ? You need to interrupt those pain signals. For paresthesia I recommend magnesium glycinate in high quantities as long as it's safe.
Continue with the PT, I swear they are very very helpful. Binaural beats helped me calm down in my last flare-up, I was in such a state of panic I swore I had CRPS and the diagnosis scared me more than cancer. Binaural beats helped me focus on my day to day life and work and I somehow managed to keep my job.

Try and ignore the vibrations and twitching as much as you can, it sounds like a flare-up to me. The more you panic, the worse these symptoms can get. Try and take deep, deep breaths.
Focus on finding a good pelvic pain consultant or a pain clinic. Try and avoid anything invasive like nerve blocks unless the Dr can promise you he has like a 80% success rate. Keep these as a last resort when all meds have failed. The meds you can try are various : Low dose naltrexone (v safe but experimental), amitriptyline, lyrica, Neurontin, SAvella, Effexor and Cymbalta, Tegretol and Lamictal. 8 MEDS! So there is hope ! A lot of options. Vulvodynia and pudendal neuralgia usually have treatments that combine medication and PT. Most women recover this way. Don't lose hope!!!!! Remission and improvement are highly possible ! please PM if you have any questions I hope you get better

mary jane wrote:

auburn99 wrote:Hi so I'm a 20 year old woman, never been sexually active because my issues started at age 16.
Back story:

when I was 16 I had a suspected bartholin gland cyst cut and drained and had a catheter put into the area they cut. Basically my literal vagina was cut into in the emergency room. I've had chronic vaginal and rectal pain since then and I'm 20 now, so its been almost 4 years. It has gotten worse every year with new and worsening symptoms and in the past 8 months its gotten to a scary point for me.

Symptoms:
In the past 8 months things have gotten worse. I have crawling sensations from my clitoris all the way to my rectum, a feeling of vibrations throughout my entire pelvic floor, twitching, and more and more pain. Burning pain and sharp pain. Pressure and odd sensations throughout my entire genital region. I also have some nerve related vibrations in my legs. My symptoms are not constant, I have times with zero symptoms but I have symptoms everyday. The clitoral symptoms are the most terrifying thing to me because I'm afraid I'm going to develop PGAD. I don't think I can handle much more.

Question: I'm going to pelvic physical therapy and the therapist thinks the pudendal nerve is involved but hasn't said I have pudendal neuralgia. I literally have no diagnosis of anything other than pelvic floor dysfunction and things like vulvodynia and lichen sclerosis have been brought up but I've never been diagnosed. I'm honestly terrified and feel like I have no future ahead of me because of this. Everything I've read about it online is not very hopeful and I understand why, having these problems make you feel hopeless. The fact that I have made zero improvements and continue to get worse literally week by week for the past 4 years doesnt make sense to me and nothing is helping. What should I do? Does this sound like pudendal neuralgia even though my symptoms are shifting and not constant? I also havent noticed sitting makes me feel worse.

It's like I've found my long missing half-sister. We have the same issues.
I have the same symptoms and potentially the same trigger as you. Bartholing glands, as Violet says above, are in fact in the distribution of the pudendal nerve.
However, vulvodynia and pudendal neuralgia have very similar treatments so try not to focus too much on the diagnosis.

First of all, what medication are you taking ? You need to interrupt those pain signals. For paresthesia I recommend magnesium glycinate in high quantities as long as it's safe.
Continue with the PT, I swear they are very very helpful. Binaural beats helped me calm down in my last flare-up, I was in such a state of panic I swore I had CRPS and the diagnosis scared me more than cancer. Binaural beats helped me focus on my day to day life and work and I somehow managed to keep my job.

Try and ignore the vibrations and twitching as much as you can, it sounds like a flare-up to me. The more you panic, the worse these symptoms can get. Try and take deep, deep breaths.
Focus on finding a good pelvic pain consultant or a pain clinic. Try and avoid anything invasive like nerve blocks unless the Dr can promise you he has like a 80% success rate. Keep these as a last resort when all meds have failed. The meds you can try are various : Low dose naltrexone (v safe but experimental), amitriptyline, lyrica, Neurontin, SAvella, Effexor and Cymbalta, Tegretol and Lamictal. 8 MEDS! So there is hope ! A lot of options. Vulvodynia and pudendal neuralgia usually have treatments that combine medication and PT. Most women recover this way. Don't lose hope!!!!! Remission and improvement are highly possible ! please PM if you have any questions I hope you get better

hi I think we may have talked before actually through email or vulvodynia support forum. We do have a very similar story, you're the only other person I've seen who has such a similar cause of symptoms as mine. Unfortunately my problems are still progressing and I think I'm developing pgad now. Hope you're doing okay