I just had to stop my college career; I'm exhausted.

[emilyb]

Hello everyone, my name is Emily. I've been struggling with pudendal neuralgia for four years, and was initially debilitated at fourteen years of age. It must seem fictitious that a young girl was diagnosed with something such as this, and I can't blame you: my doctors can barely believe it either. I'm the youngest patient most have ever seen. Specifically, I have been diagnosed with a bilateral periformis syndrome effecting the pudendal, obduratus, and sciatic nerves, in addition to endometriosis that has spread to my lumbosacral plexus. (A mouthful, to be sure!)

I used to be a very competitive sailor, in addition to a long distance runner and skier among many other sports. I crewed in 420s for three years following the onset of my pain. Last August, I was accepted to compete in worlds one morning, only to be taken off the water at nationals later that same and put in a wheelchair for a week; it was far too painful for me to walk. Since then my sailing career has ended for good, and it took a year before I could even manage going up a set of stairs again. Needless to say, it was a very dramatic change to devolve from a rising world-class athlete to not being able to get out of bed some days. I knew the risk I was taking in continuing sailing despite the pudendal pain over three years, but it seemed so inconceivable to me that as a high school girl I had to give up my passions to adopt a sedentary lifestyle. It also seemed absurd to me that instead of wondering who my date to prom was or if I could get a 5 on my APs, I had struggle with the possibility of my never having children and wondering if I could even ever have intercourse (let alone explaining to a prospective boyfriend that I had explosive vaginal pain...the definition of awkward first date, let me tell you).

Though it was a struggle during my junior and senior years of high school, I came to terms with loosing the lifestyle of sailing and general athleticism by focusing my energy on school, and my dreams of pursuing an MD-PHD in peripheral neurosurgery, or perhaps cognitive neuroscience (I am still debating between the two). I still struggle with the iniquity of the loss of sailing at such a young age, but I applied the theory that when one door closes, another opens, and I convinced myself that my new door was academia, as well as the fabulous social scene of college. I was accepted to the College of Charleston, which I fell deeply in love with during my freshman year- for me, it truly was like dream college, with proximity to the water, great jumpstart to med. school, and an wildly fun social scene. (go cougars)

Several months passed at CofC, however, and though I had spent a summer in health and mobility such as I had never experienced since 8th grade, my pain returned tenfold in the middle of the semester. Even if I had a friend drive me to my classes and I sat on a pillow, I could barely sit though the class, let alone perform at the level necessary for an Honors student. Standing through my two three hour labs soon became an impossibility, which is pathetic for an eighteen year old girl who looked entirely healthy and in good shape. I had to take the semester off and home, where I am pursuing a diagnosis or treatment with a team of 5+ doctors, and I am currently unsure of whether returning to CofC will be in the cards for the coming spring semester.

Needless to say, I am struggling incredibly with this turn of events. At eighteen, I have already had my active lifestyle taken from me, and I now found it almost entirely impossible to attend college, not even to mention my fading social life and the stress this has put upon my family and friends. I have had over five major surgeries in the past four years across the country, been put on menopause via Lupron for a year at 16 (the advice of an OBGYN for endomtriosis), am currently functioning with a suppressed immune system via Enbrel, in addition to many other extreme medical actions. It sounds dramatic, and I am not usually one to dwell on the sorrow of the situation, but I truly need some advice on how to come to terms with this turn of events effecting my life. As much as every teenager pretends to play the know-it-all sage, the truth is I would still be trying to figure out life and how to handle adulthood if i were perfectly healthy girl; how can I figure out a way to live with constrictions such as these?

Thank you for your willingness to share your wisdom, I cannot begin to express how much it will help.
Best wishes, Emily =)

[Violet M]

Dear Emily,

You are asking for words of wisdom from us but I get the feeling that after all you have been through, you could probably give all of us a few words of wisdom. You sound like an amazing person and I've no doubt you are going to reach some of your dreams and goals one way or another.

Have you been told that you will have to live with these constrictions permanently or are you just thinking short-term? Maybe there are classes you could take online so that you don't get too far behind the rest of your class while you are pursuing treatment options. I spent the better part of two years lying down working on my computer and I learned a lot during that time.

Best,

Violet M

[Bobby]

Hello again Emily, like violet said you sound like an amazing person and I also have no doubt your going places. Your very ambitious like myself and you try not to let this horribly vicious pain get you down. You and I are only 4 years apart and I believe the youngest on these forums. Our better years are being threatened by this and really it's f'ed up. I sincerely hope you get the proper treatment that you need and get back to having a normal life. In your post to me you seemed to have an upbeat attitude and being able to keep your head up though such tribulation is truly an admirable trait. I too have sacrificed a lot due to this condition, I dropped out of high school... I just could not focus on anything I was in so much pain. It was only last year I got my GED. Also I am taking time off college cause I just can't deal with the return of my symptoms. Unfortunately I have to work to pay for the treatment and for health insurance. Anyway what I am saying is that all this bs will only make you a stronger, tougher individual. You had also said you have a very understanding boyfriend and very supportive family which is really great. Just try to focus on those great things and keep your head up as you will triumph over this just as myself and everyone else here will.

[Kate]

WOW you are such an amazing person, Emily.
Ive had my pain for 6 years or so. Started when I was 23 but now when Im 29 has dramaticly effected my life.
Im only 5 months in to the chronic pain. It used to go away for months & months at a time but this time its around for good. I belive its not just the pudendal nerve entrapment but also the dorsel nerve as well. Ive been off work as the pain was to much. Im now staying at my mum & dads house while I search out the limited doctors aware of this in Australia.
What I am greatfull for is my group of supportive friends, my amazing family & funnily enough myself. I think we should all be so proud of ourselves going through this horrible condition. Its a journey that we have to take,although no choice of ours to do so.
Im reading a good book at the moment called "Life distrupted getting real about chronic illness in your 20's & 30's"

Im not sure what advice I can give you or any special words of wisdom. All I can give you are my thoughts & understanding. It helps me knowing there are other people out there that understand what Im going through. And I still consider myself young, so my social life & future has just disappeared, but I cant do anything about that, its out of my control. But what my pain cant change is the fact that I will keep pushing on, with determination. It can try to knock me down ( which some days it manages to do so with full force) But on my good days Il be damned if it will stop me from enjoying the little things.

Kelly Clackson has just realesed a new song with the words "what doesnt kills us only makes us stronger" Its an old saying but a good one. Although when Im in pain death is less scary then having a life lived with pain. What gets me through is not medication (Mines pathetic with helping the pain) But the thought that 'This too shall pass" Knowing that, yes Im in pain and it hurts so bad & I feel like Im in a dark hole, but there is a family that cares about me & their love is something that will get me through it & keep me going. My new future may be unknown or a lot more painful then I would have ever have thought for myself but their are people that will travel the road with me & keep me protected from my darkest inner thoughts.
You say "how can I figure out a way to live with constrictions such as these?" Somehow we humans just do figure out a way. I would cry into the night with my mum saying the exact same thing. I still have no idea how Im going to cope going back to work. But somehow Il figure it out. I just will. I dont know how & yes it sucks that I have to change my lifestyle but what else can we do. Humans are very resilient creatures, we adapt in the worse conditions, we show strength we never new we had.

Emily you are stronger then you think, you are not alone. No matter how much water & land divides us you are in my thoughts. I hope so much for better days ahead for all of us on here.
You have my best wishes Emily

Kate

[emilyb]

Wow, thank you to everyone who responded so promptly!

Violet- you are too kind, thank you so much! And I’m definitely willing to help anyone struggling with this in any way that I can, I am so glad to have stumbled across this forum- it’s a phenomenal way to use my frequent down time. And as of right now, I’m praying that the pain will be short term, although my neurosurgeon- Dr. Filler in Santa Monica- has told me that he needs to develop a new method to treat my condition, as two of surgeries/three nerve blocks haven’t worked yet. He is hoping that if he can find a way to control my neuritis, possibly through Hyron-drenched restalin injections around the nerves, and with its success my pain will become short term instead of long- keeping my fingers crossed!

Bobby- You’re just as optimistic as me, trust me, and it really is admirable trait. Congrats on the GED, by the way! High school was really rough for me as well, truth to be told I missed about a third of my senior year haha... Working is just as important as going to college in any case.. I have no doubt you will work it out. I mean, we’re both really young to be dealing with this, and youre right its beyond f’ed up that we struggle with this while we should be out like most people our age, but we do have a long time left for us to take advantage of the things we are pushing off because were so absurdly young. That argument’s a stretch, but maybe that’s a convincing bit of silver lining I pulled out?? Best of luck =)

Kate- I am a huge reader, and I will definitely look into buying that book. And im so sorry to hear that youre condition has flared up again, I hope it will go into remission soon or you find a good Dr in Australia. It looks like there are some great lists on this site . And I have to commend you for your amazing outlook- trying to enjoy the little things is a really good tactic, and truth to be told I’m not too good at it but I will keep trying. And it sounds to me like you’re really good at looking at the world around you for inspiration to keep fighting, which is very admirable. Keep fighting, it sounds like you an awesome mindset, and I know with that you’ll figure out a way to cope and get back to working and enjoying everything in your life. You will definitely be in my thoughts and prayers as well, thank you so much for all the warm wishes.

[ezer]

Emily,
I had surgery with Dr.Filler also and that did not work (in fact it is worse as I have sciatica issues now). Other doctors subsequently disagreed with his findings in my case. I think it may be wise for you to consult with other PN specialists before embarking on more procedures under his care.

[nyt]

EmilyB, you sound like very courageous young woman! Please look through this forum and another forum called TIPNA for information on Dr. Filler. I agree with Ezer in that it might be time for a 2nd opinion from another pudendal doctor. Dr. Filler is big into the piriformis syndrome as a cause for PNE. You also might want to do some reading on the drug Ketamine. We have a few threads discussing the drug and some of us are currently seeking treatment with this drug for our chronic pain so there will be more information coming.

Keep the courage and prayers are sent your way.

[Cora]

Emily, So sorry for your struggles and I identify with you as I had a very active and serious athletic career. I was a competitive skier for part of my life and skiing along with training horses and dogs and running fairly long distances on mountain trails. So, my life changed a lot as well. I do hope you will take a trip up to San Francisco and work with Stephanie or Liz Rummer up at the Pelvic health and wellness center. I think they would have a lot to offer you. If you have some detailed questions about them, pm me. I went to them and they helped me quite a bit.
All my best,
Cora

[Cora]

p.s. there are also some really good PT's in your area. I could get some names for you if you are interested

Cora