Health Organization for Pudendal Education

I am probably posting this in the wrong section, but I didn't know where to put it.
My experience and update with Dr. Marvel. First let me say I am writing this based off of my experience and with the realization everyone has a different experience. I am also not trying to persuade anyone’s opinion of him. Nor am I saying he is the best or the worst doctor. I believe everyone should form their own decision. Ok… with that being said here is my experience.

I had my first appointment with Dr. Marvel yesterday and I realized quickly that he is not a doctor that shows empathy. In my opinion, any doctor that treats pelvic pain, PGAD, IC, PN, PNE, etc; should master the skill of being empathic. But does that make him a bad doctor, no. You just have to know going in he is not going to be that doctor that will say “I am so sorry you are going through this or I can’t imagine what it must feel like”. Moving on… He took a detailed history and asked my symptoms and went on to explain we will never be able to find the “it that caused this” stop looking for it. He believes in my case more than one element is causing my symptoms. But, I think that is the same for most of us. I explained how uncomfortable I am to be around people because I have PGAD and the constant arousal sensations. He quickly said “you’re not aroused it is a pain condition”. I replied very bluntly saying I understand that PGAD is a pain condition and not sexually. I am only trying to explain to you Dr. Marvel that my symptoms are distressing and affect my life. To change the topic, he said let me examine you and afterwards we will talk some more.

It was a typical examine using toothpicks and a special scope to look at the tissue in the vagina area. He pushed on my bladder and I said that hurts a little. Therefore, he had his nurse insert a catheter empty my bladder and inserted lidocaine. Immediately the tingling in my clitoris stopped.
I went back in his office to talk but he never once asked me did the lidocaine take the pain away. So me being me I said I don’t feel the tingling before he had a chance to continue what he was saying. He went on to say he believes I have IC, possible PN, and a I probably have a Tarlvo Cyst. He prescribed Ampitripilyne and ordered an MRI-MRN 3 T that I have to get done at Johns Hopkins.

I do not believe I have IC because the only symptom I have that could suggest IC is the urge to urinate frequently. I would say I urinate once every 2 hours, but I am also on a diuretic that causes you to pee often. When my bladder is full I do feel some pressure but that’s it. It does not hurt to pass urine and my stream is normal. But I am not a doctor and this is just the first step to possibly finding treatment that will help me. He also told mem to buy Super Strength Aloe capsules and provided me with contact information to order them. He believes with the Aloe and changing my diet IC will get better. If I even have IC.
At this stage, he doesn’t know if IC is the cause of the PGAD or if a nerve condition and or possible cyst is causing my symptom’s due to the burning in my thighs. Taking Aloe and changing my diet will not hurt me. I feel I need to do more research on IC as well because I don’t know much about it. I am hopeful the MRI he ordered will show something fixable to be the clue that ties everything together. Notice I said I am hopeful!

So, would I see him again…. Maybe, but at this time I am keeping my options open and exploring other doctors.

Oh, I almost forgot to mention he doesn’t like writing notes to excuse you from work, however I demanded a note that would allow me to work from home for at least a month. We can change my limitations as needed in the future. You have to be able to advocate for yourself and I am pretty good at doing that. I was disappointed that he wasn’t more aggressive with treating the PGAD symptoms so I could at least function.

At least I got the MRI I wanted so that is a win to me!

Thanks for the update, hopeitworks. It is helpful to learn more about these various doctors. I'm glad you got the MRI. So it sounds like you find out more about the cyst possibility (and perhaps other things) with the MRI. If the lidocaine helped, could that be something you use regularly? Glad you got the note for work.

April

You could also try extra-strength vagisil topically. (20% benzocaine) The walmart equate brand is cheaper. I found that it worked better than 5% lidocaine.

Thanks for sharing your experience. I am not completely following the logic on some of his conclusions but maybe there are more details that he based his conclusions on than we are aware of. For instance, I am not sure how he concluded you probably have a tarlov cyst but maybe he drew the conclusion based on something he saw from the physical exam.

Did he examine the pelvic floor muscles for tension or press along the course of the pudendal nerve -- at the ischial spine or along Alcock's canal?

It seems he is not fully aware of how distressing PGAD is and how extremely difficult it would be to work with those symptoms. I don't understand why he would be reluctant to write the note unless he has had experience with patients who seek excuse from work when they aren't really in that bad of shape. Often doctors are faced with that dilemma. However, most people with PGAD are in serious emotional and physical distress. Maybe he thinks the amitriptyline will calm down the symptoms.

Violet

April wrote:Thanks for the update, hopeitworks. It is helpful to learn more about these various doctors. I'm glad you got the MRI. So it sounds like you find out more about the cyst possibility (and perhaps other things) with the MRI. If the lidocaine helped, could that be something you use regularly? Glad you got the note for work.

April

Good point April about using lidocaine daily to control the symptoms. I will call his office on Monday and ask him to call it into the pharmacy. I have a friend that has a better medication than just lidocaine, it's a compound medication, so I am going to push for that. I hope whatever the MRI shows is easy to fix! I am still not sold that I have IC, I did some research and it doesn't seem to fit.

Violet M wrote:You could also try extra-strength vagisil topically. (20% benzocaine) The walmart equate brand is cheaper. I found that it worked better than 5% lidocaine.

Thanks for sharing your experience. I am not completely following the logic on some of his conclusions but maybe there are more details that he based his conclusions on than we are aware of. For instance, I am not sure how he concluded you probably have a tarlov cyst but maybe he drew the conclusion based on something he saw from the physical exam.

Did he exam the pelvic floor muscles for tension or press along the course of the pudendal nerve -- at the ischial spine or along Alcock's canal?

It seems he is not fully aware of how distressing PGAD is and how extremely difficult it would be to work with those symptoms. I don't understand why he would be reluctant to write the note unless he has had experience with patients who seek excuse from work when they aren't really in that bad of shape. Often doctors are faced with that dilemma. However, most people with PGAD are in serious emotional and physical distress. Maybe he thinks the amitriptyline will calm down the symptoms.

Violet

Violet,
Thanks for the extra strength vagisil tip, I think I will get some today! He did push on my muscles while doing the pelvic exam, but said they weren't too bad. He doesn't explain reasons why he thinks what he thinks. I had the feeling he would get offended if asked why do you think I have a cyst or IC. Which is a red flag, because this is my body I deserve to know.

I think it is RIDICULOUS that he was hesitant to write me a note for work. Maybe I didn't come across as distressed enough for him, I don't know. I made it clear I was distressed.

I agree, you deserve explanations.

Don't forget you can always use ice too although be careful not to get frostbite! I used to insert frozen water balloons vaginally in order to get to sleep. It's kind of intense but once you get used to the cold it can sure help numb things up.

You can also wear a small reuseable ace brand cold compress. You can get them in the shape of a pad that fits between 2 pairs of underwear.

Violet

Thank you for posting this review. I had considered seeing Dr. Marvel as he's one of the few PN Drs. within driving distance, but his office told me they only accept insurance if you're a woman. Male patients must pay out of pocket, which starts at $600 just for a consultation (and more, if he decides to do any procedures in office). I can't afford that and it just sounds like flat out discrimination to me. I don't buy it being an insurance coding issue as other gynecologists (like Drs. Hibner, Conway, etc.) see male patients and accept insurance (as do pelvic PT's I've been to). I probably wouldn't go anyway though as I've heard a lot of bad reviews regarding the issues you mentioned (lack of bedside manner, giving patients a diagnosis that doesn't seem to fit, etc.)

I'm not sure what he means by "we're never going to find what caused it" - how can you treat a problem if you don't know the cause? You're just treating symptoms then. Many of us had a clear incident that started the problem so obviously something went wrong.

I'm curious about your MRI- is it a regular 3T MRI like the Potter MRI or is it an MRN? Is that covered by insurance? I'd like to have one done but its difficult finding any Dr. who would know what I'm talking about.

Best of luck, and keep us updated!

Violet M wrote:I agree, you deserve explanations.

Don't forget you can always use ice too although be careful not to get frostbite! I used to insert frozen water balloons vaginally in order to get to sleep. It's kind of intense but once you get used to the cold it can sure help numb things up.

You can also wear a small reuseable ace brand cold compress. You can get them in the shape of a pad that fits between 2 pairs of underwear.

Violet

Violet,
I already have the water bottles with inside of a sock ready to assist me. But thanks for the tip.

Jason32 wrote:Thank you for posting this review. I had considered seeing Dr. Marvel as he's one of the few PN Drs. within driving distance, but his office told me they only accept insurance if you're a woman. Male patients must pay out of pocket, which starts at $600 just for a consultation (and more, if he decides to do any procedures in office). I can't afford that and it just sounds like flat out discrimination to me. I don't buy it being an insurance coding issue as other gynecologists (like Drs. Hibner, Conway, etc.) see male patients and accept insurance (as do pelvic PT's I've been to). I probably wouldn't go anyway though as I've heard a lot of bad reviews regarding the issues you mentioned (lack of bedside manner, giving patients a diagnosis that doesn't seem to fit, etc.)

I'm not sure what he means by "we're never going to find what caused it" - how can you treat a problem if you don't know the cause? You're just treating symptoms then. Many of us had a clear incident that started the problem so obviously something went wrong.

I'm curious about your MRI- is it a regular 3T MRI like the Potter MRI or is it an MRN? Is that covered by insurance? I'd like to have one done but its difficult finding any Dr. who would know what I'm talking about.

Best of luck, and keep us updated!

Hi Jason,
The MRI-N he ordered is the Potter kind. I know this because I double checked with Johns Hopkins to ensure it was correct. My insurance covers it.

WOW... Jason $600.00 just to walk in his door??!!?? That is outrageous! The only reason why I went to Marvel was because he is not very far from me. If I were you I would call Johns Hopkins and explain your possible diagnosis and ask them what doctor you should see. Tell them you have possible PN. I called them today and they suggested I see Dr. Dillion who is also located in Annapolis.

When he said we may never find the "it" that caused me to have the same reaction as you mentioned. I told him I am ok with treating the symptoms until we find what the actual cause is. But, when all is done I need to know what caused this to happen to me. I think that has a lot to do with why he order the MRN. Like I said you have to be firm with him.

I will keep everyone posted. Good Luck Jason!

Hope

October 17, 2017
UPDATE....
I saw an amazing Urologist named Dr. Zheng and she said I do NOT have IC as I am not showing any Clinical symptoms of IC. She informed me she would send Dr. Marvel a letter stating her opinion. At first, I said “OH NO, don’t notify him he will get mad”. Then I thought to myself “wait... what am I saying ??? He will get mad, that shouldn’t matter”. I told Dr. Zheng go ahead and send the letter to Dr. Marvel. Dr. Zheng stated he will probably disagree with her. Even she is aware that he can be somewhat hard to communicate with. She advised me not to get into a power struggle with him and to tell him I tried the IC diet with no change. I showed the Urologist my MRI results and she feels Marvel can help with my nerve pain and PGAD.

I knew I did not have IC... I just knew it... You have to follow your gut and do research on your own. It's not fair considering doctors get paid to do the research.

I see Dr. Marvel on Thursday, October 19, 2017 and I am wishing for a good appointment. If he suggests a nerve block I am taking Violet’s advice and telling him no steroids, but Marcaine is OK. I have the article Violet posted printed and ready for my appointment, just in case he questions it. I am anxious to hear what he says about my MRI results.

A close friend found me a fabulous Physical Therapist. I will ask Dr. Marvel if he will refer me to PT so I can schedule an appointment. I will update again after my appointment on Thursday.

Wishing everyone pain free days!
Hope