Seeking your valuble insight

[miniwheat]

Hi everyone,

I want to first say thank you to all of you who have offered generous advice, encouragement, and insight for those who are feeling hopeless, such as myself. Since discovering this site, I have already gained more hope and determination to pursue medical intervention, and potentially debunk my mysterious ailment.

As long as I can remember, I have felt severe discomfort/tingling/torment in my genitals and lower spine -- as a child, I felt afraid that I was a freak of nature, and did all I could to conceal my suffering. Despite my best efforts to hideit, I would still be grabbing and applying pressure to my genitals almost constantly, and I remember being asked if I "needed to use the bathroom" frequently by adults. I was unsure about the cause of my discomfort, but was too afraid to ask for help, or to discuss the matter with anyone. In retrospect, it is painful to think about the sum of possibilities that I pondered, and the fear that crippled me, preventing me from speaking up about the torture I was in. I have been suffering from impeding discomfort and agony from my ailment for, what I am pretty sure, has been my entire life. I have hyperesthesia in my genital region that makes sitting, sleeping, walking, standing, urinating, etc., very irritating, and sometimes completely unbearable. If I do not use every ounce of my might to suppress the sensations, they rapidly progress into a throbbing/orgasm-like feeling that makes me want to rip my hair out -- it is so unnerving. I also have a tingling sensation in my sacral spine that sometimes migrates to my legs, and some tingling/itching in my finger tips.

I first expressed my discomfort to my mother when I was 8 or 9 years old, and I was only able to describe it as burning/itching in my genitals. Before any health care was sought, she did some internet research regarding my symptoms, and concluded that I must have had a yeast infection. We got some OTC medication, which I remember vividly applying myself (all the while, very confused and terrified), but alas, it did not resolve my discomfort; however, when my mother asked me, days later, if I felt better, I lied and told her that my discomfort was gone.

I suffered in silence for almost 10 years after that, until I was a young adult, and finally gained the courage to see a physician about my genital discomfort. I was still afraid, so I just went to Planned Parenthood, where I knew my parents would not need to be involved (for whatever reason, I was afraid that my mother would be upset with me for lying about my recovery years prior), and where I assumed I would find the help I needed. At that time, I was still completely ignorant about what was going on in my body, and had been in denial about it for so long/hiding/rationalizing my discomfort that the full magnitude of the dysfunction had not quite occurred to me. The doctor I saw basically diagnosed me with a yeast infection, and ran some STD tests (which came back negative), then sent me home with an oral medication for my "yeast infection," which did not resolve the issue.

I began to feel especially scared once I had officially embarked on the journey to find a solution, which seemed less and less possible as time went on. I have been slowly, but surely, working on addressing this issue for the past 5 years, but have had no success yet. Every doctor I have seen has either looked at me cross-eyed, proposed mental illness, prescribed anti-depressants, or implied that I need to just learn to live with this ailment... And that is no longer possible for me -- I can no longer maintain sanity while sitting in classes, doing my job, or even just sitting ("relaxing")... I am constantly, INCREDIBLY irritable due to the focus that is required to suppress my symptoms, and the frustration involved with the unwavering, tormenting sensation I feel in my body.

It has finally come to the point where I have had to drop out of school (due to sheer inability to sit still during lectures, or to study), quit my job, and move in with my parents while I attempt to seek medical assistance. I am dying for resolution to my life-long misery, and fear that I will not be able to continue suffering for much longer... I have sustained so much mental damage from hiding my shame, discomfort, and fear for the entirety of my life, and I am still completely afraid. This ailment has spawned the development of many other ailments during my life (bulimia/anorexia, depression, anxiety, constipation/GI dysfunction, urinary incontinence, etc.), and I am way past my breaking point.

I have read so many stories from you all, noted suggestions and methods for coping/pursuing help/treatment, and I am so endlessly grateful to you all because I now have some leads that I would have been struggling to attain on my own. If anyone has any advice, input, or can relate to my story, I would greatly appreciate your contribution.

Thank you so much

[Patty]

Maybe you should post what state you live in. Then some of the members can direct you to an MD/PT that's in your area.

[stephanies]

Mini wheat,

It sure sounds like you have been through an awful lot. What types of doctors have you seen for your pain? Have you had any imaging, such as a pelvic MRI, done? Also, Patty's mention of a PT evaluation might be a good idea as well.

Sincerely,
Stephanies

[Violet M]

Miniwheat,

The amazing part of your story is that you have been so courageous for so many years. I cannot imagine being as brave as you have been under such an incredible amount of suffering. My heart is breaking for you.

I don't know what treatments or diagnostic tests you've had so far but if you haven't had an MRI of the lumbar spine, lumbosacral plexus, and pelvis, it seems like all of those would be really important. These tests would help to determine if you have tarlov cysts or other possible nerve impingements that might be causing your problems. If you can have the Hollis Potter version of the 3T that would be even better. You can find her listed in the physician section of the website at pudendalhope.org.

I can relate to parts of your story such as some of the symptoms you have experienced but I didn't have them for nearly as long as you did so I haven't been through as much as you have. I just hope that now you will be able to find the right treatments and be able to heal and live a life without discomfort. It sounds like you might have PGAD based on some of the symptoms you described so you probably want to read the thread on PGAD on this forum. http://www.pudendalhope.info/forum/view ... =48&t=1590

Hang in there for a little bit longer. You have lots of options you can try and hopefully one of them will work for you. You can also check out my article on PGAD for other ideas. It's at the end of this newsletter: http://www.pudendalhope.info/sites/defa ... ne2013.pdf

Violet

[miniwheat]

Violet,

I can't thank you enough for your validating, and supportive response. Until about a month ago, I still felt as though I was completely alone in my misery, and I had no idea where to start looking for answers. Determined to find end my suffering, I finally went to an OB/GYN about this issue about 2 years ago. Unfortunately, the doctor I saw was at a loss in regard to my issue, but she was very supportive, and she wanted to help me, so she referred me to Amy Stenson, M.D., an OB/GYN with a specialty in vulvar health at Oregon Health and Science University (I live in Portland, OR). Dr. Stenson had minimal knowledge of pelvic floor/vulvar disorders, but her only real recommendation for me was to take Cymbalta and utilize physical therapy. I can't truly say that she did not help me because I did not try to the Cymbalta due to my severe body image/eating disorder issues that instill a great deal of fear about weight gain, so I am deathly afraid of antidepressants. I have heard that Cymbalta is fairly mild as far as side effects goes, but I just could not get past my fears. I did try physical therapy, but the exercises aggravated my symptoms. No diagnostics have ever been performed on me -- only symptom-based evaluation. It has been very frustrating trying to get doctors to take me seriously... I have no come across a single one yet who understands the full degree of my agony.

After reviewing many of the resources on this site, I was able to come to the conclusion that I need to pursue an MRI with Dr. Potter (which I am working on getting an order for), and that I need to locate a doctor who specializes in this realm of the human body, which I am also working on. I have set up a phone consultation with Dr. Conway in NH tomorrow, which I am very nervous about. I NEED to be direct and explicit about the severity of my condition, and how crucial it is for me to find solutions. I feel very pessimistic about finding help, given the poor luck I have had so far, but I know that I have to keep trying, or I will lose myself completely. I have already had to postpone my education and quit my job due to the incapacitating nature of my condition.

I am sorry that got a bit rambly -- I am so overwhelmed by all of this. I am desperate for help. Thank you, again, for all of your help, and for sharing your stories with the world so that others can benefit from your discoveries. It means so much to me to have found this site, and to learn of these resources. I am at the end of my rope, and I must find a solution. I am hoping that something good will become of my conversation with Dr. Conway tomorrow.

[Violet M]

Hello Miniwheat. Just wondering how things went with Dr. Conway. Many patients have said he is a very caring person. Hopefully you are on the right track now and he will be able to help you with some effective treatment options.

Violet

[miniwheat]

Violet,

Thank you for checking in. I spoke with Dr. Conway last week, and he was incredibly kind and supportive. Unfortunately, he did not think that he is the right physician for me until my case becomes surgical. He did, however, refer me to Dr. Irwin Goldstein in San Diego, and also recommended that I contact Stephanie Prendegast, who is a knowledgable PT. I have phone consultations with both of those health care providers early next month -- I am hoping for some progress! I am also working on getting an order for the pelvis MRI from my local OBGYN.

[Violet M]

There are a couple of PT's on our list from Oregon. http://www.pudendalhope.info/node/63#OR It looks like they are a little ways away from Portland, but they may know a PT in Portland who treats PN. I noticed your previous PT had you do exercises. Exercise is not always the right treatment for people with PN. So maybe it's worth it to give PT a try again with a different person. Stephanie is excellent but that would be quite a trip for you, especially if you need regular PT.

Violet

[make-it-stop]

Miniwheat,

Hi. I came across your post because I was doing a search for a PT in the Portland area. I want to point you to one more resource - if you go to www.apta.org and click "Find a PT" up in the top ribbon, you can search for a PT who does "Women's Health" by checking that box in your search (double-check in the description or on their website that they actually do women's therapy; occasionally there are a couple that show up in the listings that don't). That is how I found my current PT here in the Chicago area. But I, myself, am trying to narrow down that list. I'm looking in the Portland area because there is a good chance I'll be moving there shortly, and will need to continue my therapy.

From reading your first message, I immediately was thinking you may possibly have PGAD (like Violet also mentioned). It looks like Dr. Goldstein is a great doctor to be talking to. Here's an article I found that you may want to read, if you haven't already: http://bottomlinehealth.com/help-for-pe ... -disorder/

-M.I.S.

[miniwheat]

Thank you both for your advice! I did make a connection with a physical therapist in Eugene -- there is a pelvic health center there that I will be trying to work with during my treatment. I also spoke with Dr. Goldstein today, who I am planning to meet with in about a month. He seems to be confined that I can. Gain control over this condition and live a normal life, but I must admit that I do borderline confident. My biggest fear is that I will comply be directed to take medications to suppress my symptoms, but the root cause will not be pursued. I hope that I will be able to find some kind of success in this endeavor -- it is very scary for me.

Thank tou all for your help -- it means so much to me.