doctor willing to write documents in east coast

[I_miss_sitting_down]

Hi, I was diagnosed with pelvic floor myalgia by Dr. Richard Marvel. I was able to continue school and stuff at the time but now that I'm working things have gotten significantly worse and I can't sit or stand (so forget about the standing desk) without getting pain.

So my employer who is super nice says I just need to get documentation from my doctor. I asked to get documents from Dr. Marvel but his office has repeatedly told me that he does not offer any sort of documentation for employers or disability.

Question 1) How on earth is a doctor that knows what we're going through not willing to assist you in getting short term disability in order to get better?
Question 2) Does anyone know of a doctor in the east coast that is willing to do it? I just don't understand why Dr. Marvel would refuse to do so.

I would kill to be able to work and live the normal life of a 25 year old but I had to leave my job cause the pain was getting worse, move back in with my parents, and I don't know what I'm going to do. Does anyone have any suggestions??

[stephanies]

Is it possible to go through the Johns Hopkins pain center? I suspect you would need a referral there, but maybe Dr. Marvel's office can do that. Maybe if you get a copy of your chart from Dr. Marvel you won't have to start completely over with them. Good luck.

Stephanies

[April]

I miss,

That sounds really difficult. I can't imagine why he wouldn't give you some documentation. Have you tried Dr. Dellon's office? He's also in Maryland. And there is also Dr. Conway in New Hampshire. Both are on the doctor list on this site.

April

[nyt]

I_miss_sitting_down, boy I'm feeling your difficulty with trying to get the documentation you need. I have found in this journey that the majority of doctors do not want to get involved in any kind of paperwork involving disability. It is so frustrating when you need their help for your employer and most just say they don't get involved in disability. Some suggestions that I have found have worked for me:

1) Talk with the doctor directly instead of the office staff you might find out they have some type of standard letter they send out. The best way to do this is to set up an appointment to personally see the doctor face-to-face. I have found is the best approach if you can do that.

2) Your family doctor is another option. I have found my family doctor much more willing to help with my disability issues than any of the specialist that treat me.

3) Lastly, I finally had to hire a disability attorney to get the needed paperwork. The specialist tend to be more willing to provide what you need when they get a letter from an attorney. It is sad that most of the time that is what you need to do is to get a disability attorney.

[stephanies]

Good advice about hiring an attorney, NYT. I can't believe that doctors who treat pain conditions won't help their patients in this way.

[janetm2]

Although I am truly grateful for the surgery Dr Marvel did for my PNE that has allowed me to continue working, the limited paperwork I could get from him/ his staff almost had me lose my job. I have PM'd others to make sure they have a dr that can help with paperwork before surgery so they are not left scrambling. Dr Marvel referred me to the Rosen- Hoffberg pain center in Baltimore because he said he cannot determine disabilty and if I could not return to work in a month then I might be disabled. That was a tough stint due to how busy it was and they clearly had no concept of my severely limited ability to sit or stand the 3 months post surgery, nor did the dr I saw have any concept of PN or PNE. However they were able to fill out Family Medical Leave act paperwork to get me Leave Without Pay while I got physical therapy from Her Health in Columbia Maryland to get rehabed to work again. This saved the job. I then found a dr to continue my care and write paperwork through the past few years. I'll PM his info to you. He also had an attorney to reccommend for disability but I did not need it. I truly feel for anyone with these conditions because the lack of knowledge and help is very limited.
Janet

[I_miss_sitting_down]

Thanks everyone for your replies. It's good to have support of others going through the same thing.

I tried contacting Dr. Dellon a while ago but because my symptoms are so different than most he doesn't think he can treat me.

I have the tight pelvic muscles of someone who has a muscle dysfunction so I feel tightness and pain in the upper legs. But on the other hand, I also can't feel my vagina anymore. So none of the doctors/PT's seem to want to say I have pudendal neuralgia but they all seem confused about the lack of sensation in the vagina.

I called Dr. Marvel's office to see if they could at least give me a list of doctors that they could refer me to and the recepetionsit said that any general doctor could do it. Are you kidding me? I went through several general doctors, neurologists, gynecologists, urologists, gastroenterogists, before finding out what it was and you want me to ask a general doctor who is unlikely to know about this for letters to my employer? I told her that pelvic floor myalgia is pretty rare and hard to explain to which she replied "It's really not that rare". My ass it's not rare. As if women in their 20's often quit their job because they can't stand/sit and feel their vagina, yeah it's super common.

I just finished school and started working so I really don't have much money saved up for a lawyer though I will look into it. It just really shocks me how doctors who know how much we suffer don't want to help with that. I regret starting work after school because I think I got worse with having to sit/stand for long periods of time and jobs are extremely time consuming when you need to focus on rehabilitating your body. I am honestly in such shock that Dr. Marvel would refuse to do that, I don't understand the reasoning behind it at all. Things like this make me wonder if I'm better off just meeting with female gynecologists, maybe they may be able to empathize more.

I know people on this forum have it way worse than I do, but it doesn't feel like I'm living a life anymore. Forget long drives and traveling, forget sex, forget getting married, forget working. It really feels like my life is ending right when all my friends' lives are just beginning. How do you guys deal with all this?

[Violet M]

I Miss,

Can't remember if you ever have an MRI to rule out an impingement of the sacral nerve roots. The pudendal nerve innervates the lower 1/3 of the vagina. Is that where you feel that your loss of sensation is? I don't know...I'm just always trying to figure out the root cause of things.

How to cope? Well, it's not easy especially when you are so young. I guess for me it was a one-day-at-a-time strategy and I just kept searching for answers until I found what worked for me. Please keep your courage up and don't accept anyone telling you your life is over yet.

Violet

[I_miss_sitting_down]

I did have an MRI but I've just been told it was the wrong one (I had an abdominal MRI but what my new doctor needs is a pelvic MRI). So I'm getting a pelvic MRI next week and I'm terrified it'll show that my nerves have been being damaged all this time with all the stretching I've been doing with PT. I normally feel better after physical therapy but I've heard that people with pudendal neuralgia and not just pelvic floor myalgia should avoid stretching/exercising.

[Violet M]

My understanding is that stretching can be a problem if you have pudendal nerve entrapment but if it's pudendal neuralgia with a tight pelvic floor and unlikely to be an entrapment, then stretching shouldn't be a problem. The trick is figuring out if it's likely a nerve entrapment. The best article I know regarding distinguishing between an entrapment or not is the Nantes criteria article.

http://www.pudendalhope.info/sites/defa ... iteria.pdf

Violet