Newbie from WV with a question

[Myra]

I am a newbie from West Virginia, USA. After 19 months of suffering, I couldn't believe my eyes when I stumbled across this site yesterday. It was a particularly painful day and I decided to try to research for possible answers. This is the first I've ever heard of PN or PNE and now I can't wait to talk to my doctor about it. It all started with a complete LAVH in June 2009 and has gotten progressively worse since then. I've seen 3 gynecologists, a urologist and finally a urogynecologist at Cleveland Clinic. I've endured MANY diagnostic procedures, none of which have been successful or even helpful. As you all know, it has been a painful 19 months and keeps getting progressively worse, but when I read the posts and see that some of you have suffered for years and years, it actually makes me feel blessed to be in my own shoes. I actually cried when I started reading this information yesterday. FINALLY, an answer (I think). I do have one question... Have any of you heard anything about Dr. Richard Marvel in Towson, Maryland? He is the closest PN specialist to me and I have called his office for an appointment. Please let me know what your thoughts are.

[Violet M]

Welcome, Myra. Your reaction to finding the forum is very similar to what happened to me. I'm glad you found us.

You can do a search on Dr. Marvel -- up in the right hand corner type his name in the search box and the posts about him will come up. From what I've heard of him he can definitely help you with a diagnosis. I don't know how many PNE surgeries he has done or what his success statistics are. Those would be good questions to ask him but I hope some of his patients will be able to give you more info.

[Karyn]

Welcome Myra!
It truly is a huge relief to finally find others who are going through the same thing. I'm very glad you found us, too!
Please read all you can from this site and feel free to ask lots of questions. I wish you the best with your appointment with Dr. Marvel. When is it?
Warm regards,
Karyn

[JRS]

Myra,

Was Cleveland Clinic unable to diagnose you? I am scheduled to visit May 6.

[Myra]

Dear Violet,

Thanks for the advice! I will research Dr. Marvel as soon as I've answered all the replies I received. And will ask the pertinent questions when I finally see him. His office returned my call and was supposed to mail out an information packet to me yesterday to complete and return to them. I will do so as soon as possible. They will then schedule an appointment for me. I will keep you posted.

Thanks again! I really appreciate your advice!

Myra

[Myra]

Dear Karyn,

I am learning so much from all the posts on here! I don't have an appointment with Dr. Marvel yet, but they will schedule one for me as soon as I complete an information packet they mailed to me and return it to them. It can't be soon enough for me?

My symptoms are much like yours. I had a greatly enlarged uterus (as though I were 5 months pregnant). But I think a lot of the damage to me is the result of a bull-headed surgeon who believed he was god. He refused to perform an abdominal hysterectomy on me, instead bragging that he had once removed a uterus like mine with no lasting effects. My surgery was only supposed to last 2 - 2-1/2 hours, but instead took 7-1/2 and required the assistance of another gyn/surgeon. My family was worried sick during this whole time. I'm no expert, but I still believe that tugging and pulling on a greatly enlarged uterus for several hours had to result in damage to my pelvic floor. The pain commenced immediately after my surgery and when I reported this to him at both my 2-week followup and the 6-week followup, he said there was nothing wrong with me and advised that "I must be a slow healer". He was a real smart alec and I haven't been back to see him since.

I was a medical assistant for 12 years and learned to listen to my body many years ago. Why can't doctors just believe what you're telling them when you have no history of drug abuse or hyperchondria?!

Thanks again! I truly appreciate your advice!

Myra

[Myra]

Dear JRS,

No, Cleveland Clinic was of no help whatsoever. The urogynecologist I saw believed my pain was coming from a bladder sling that was "too tight". He did repair surgery and when I followed up with him 4 weeks later and advised that the pain was in fact worse, he said there was nothing more he could do for me. When I suggested the possibility of nerve damage (as I have with EVERY single doctor I've seen for this), he advised that the diagnostic testing for nerve damage in the pelvic region was not successful and he didn't advise having it done. I requested a referral to a pain management clinic because I HATE relying on pain pills to get through each day and he agreed to that. My family doctor is making the arrangements for the pain management clinic at a hospital a little more local to me. I am not hopeful that they've ever heard of this condition though and will not know how to treat it. But I'll give it a try. Honestly speaking, I'm so sick of doctors that I could vomit. So few of them actually listen to what you're telling them and 90% of them think they know more about your body than you do. Just because they're experts doesn't mean they know what my body is feeling. I am very thankful to have a family doctor who tries her best to help me! If not for her, I think I would have lost my mind several months ago.

I'm not sure going to Cleveland Clinic will be anymore beneficial to you than it was me, but I'll be curious to hear what they have to say. If you don't mind me asking, which doctor are you seeing?

Myra

[helenlegs 11]

Honestly speaking, I'm so sick of doctors that I could vomit.

Myra

I know just how you feel Myra. At least you have found this community and all the advice and knowledge that will follow. Good luck.
Take care
Helen

[Myra]

Dear Helen,

I agree with you wholeheartedly! It is such a relief to talk to someone who REALLY knows what I'm going through and understands the significance of this indescribable pain. Until I found these sites, I had never known anybody (in the medical field or in my personal life) who has gone through such a thing. If they've never known this, they can't begin to understand. However, I am very blessed with a patient, loving, compassionate and supportive husband, children, family and church, so I know I have a leg up where others don't. I have discovered some descriptions on here that have helped though. My favorite is "carpal tunnel of the butt". lol

Thanks and God bless!

Myra

[JRS]

Myra et all,

My appt in May at the Cleveland Clinic is with a Neuro - I was told a name but quite frankly I can't remember a whole lot on these meds. I'm very sensitive to them -- some I can't think on, some I just cry on....I just want my life back. I'm definitely going to probe with my doctor to ask more questions and correspond with them prior to my making the trip. As a side note, I have found relief in "local iscial pain" from the lidoderm patch and Naproxen...not so much from the other drugs to reduce neuoropathy. I'm doing PT next week and scheduled for a block the week after. I'm scared about all of it as I don't want to get worse...