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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

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Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

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Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

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Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

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Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

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Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

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Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

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Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

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Suicide seems my only option!

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Suicide seems my only option!

Post  Kate1981 on Tue Dec 04, 2012 12:03 am

Hello everyone

Some of you maybe have seen my previous posts. I have come to the point now that to end my life is the only option I have left. I used to have a good life before this evil v took hold. Since this has happened ive lost my relationship which I believed caused it in the first place I am now in the process of losing my house which i have saved for for years and have not even had the chance to move into bcos of my v and lastly i am going to lose my perfect job as long haul flight attendent. I ask myself why why why? What have i done to deserve this? Feel to end it is the best thing to do for myself and my family. I am a mess and im causing hurt for them. Ive tried so hard to be strong but now no fight left!

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Re: Suicide seems my only option!

Post  Alana3 on Tue Dec 04, 2012 1:43 am

Omg no you ate stronger than that! V sucks I know but pleasebdont do that! I've been there so I know what you're feeling but please don't where do you live. Just no no no! There's gotta be an option!

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Re: Suicide seems my only option!

Post  cba321 on Tue Dec 04, 2012 11:30 am

I'm sure a lot of us have felt like that at one time or another, particularly at night when it just provides thinking time in silence (not to mention lowered happy hormones not helping). Killing yourself will cause your friends and family so much pain, so much pain. I'm sure you have fight left in you, sometimes it is hard to find, but it is there and i'm guessing that is why you posted. I know it is an old cliche (and can be very annoying sometimes when ppl mention it), but things have a way of working out, maybe not the way we want them to, but work out to a point where it is manageable and then eventually to find your path.I look back on really hard times in my life, times when I have wanted it over, but without those times, I wouldn't have such a deep appreciation for life. An appreciation that most people go without. Hang in there Smile

xoxo

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Re: Suicide seems my only option!

Post  LisaAlhadeff on Tue Dec 04, 2012 9:08 pm

Oh Kate,

Suicide is absolutely not an option, even though your life is currently really hard. Depression is understandable, but you DID NOT deserve this and you certainly DO NOT deserve to die.
I live in Leeds, a short distance from you. I'm also going to Manchester this week. Can we meet? Maybe we could help each other?

Lisa xxxx

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Re: Suicide seems my only option!

Post  jen007 on Wed Dec 05, 2012 3:32 am

Kate,

I know how you feel, I think most of us do. Dealing with the pain is so hard and a lot of the time it's easier just to give up on ourselves, but you can't give up. It's not going to be easy, but life does get better. I've just recently found somewhat of relief after 5 years of suffering. It's never going to be perfect, but it can always get a little better. You're life is worth living. It may be hard to see that now, but it is. None of us deserve this pain, but I truly feel like God, or whomever/ whatever you believe in, has put me through situations in my life to make me a stronger person. Though vulvodynia has broken me down many times through out my life, it has built me up and made me a stronger person who is able to deal with something so agonizing. You will get through this rough patch. We are all here to support you and give you advise. I really hope you don't harm yourself in anyway.

You're in my thoughts (all of our thoughts).
-Jen

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Re: Suicide seems my only option!

Post  Darkhorse on Wed Dec 05, 2012 10:46 pm

I've been where you are so many times. I believe I would have a marriage now, children, a stable career (actually I've been on disability since my 20's, so all of my life I haven't had my "dream job", after working like a demon in college to advance my dreams), if it weren't for v. I have other disorders as well, but this eats away your soul in a very central and specific way. It's amazing how this part of our body can touch every aspect of our lives. I wake up many mornings thinking I just want it to be a bad dream, all that I've lost and am grieving over. But it's my life and here I am. Sometimes I just sit there with the horror and I'm almost in disbelief that this is how my life has served up, as the world passes me by with its sexuality, partners, "wild, crazy, mind-blowing sex," marriage proposals, children, grandchildren and oblivion to all this.

One thing that keeps me going is the idea that if v has taken everything away from me, I'm not going to let it take away my life as well. There are some things we don't have control over about v and what we can't do with it in our lives. But there are things you -- YOU -- can decide it won't take from you, and that is your chance to keep living. Your story is still untold, and no one, not a single person on earth knows what's going to happen to them tomorrow. So why let v win? Your robbing yourself of the chance to see something else arise in life that you don't see now would be handing the victory to the v. Hasn't it taken enough? Don't let it have this, too!

It's a kind of mental shift...to instead of feeling like giving up...to fight fire with fire. Even if you don't have any answers yet, and are losing a lot of material things in life...you don't have to give up your hope that you can get better, or get more peace with whatever you are called to do even if you have this condition. That's what I'm working on now, and it's really hard.

This is a huge grieving process. Are you in counseling? I just started with a sex therapist, only had one session so far. I'm broke and poor from my illnesses, and she doesn't take my insurance. But she kindly put me on a sliding scale, slashed her rate for me. I don't know how long she will continue at that rate, she was a bit noncommittal, but I'm going through a very bad time emotionally myself now, and so I'm making it a priority. Please get in with a counselor who has some familiarity with at least women's health issues (though I've gone to a lot of therapists and they were worthless, so having a health focus is important, and also a grief focus.)

Suicide will only destroy your loved ones. I've seen it happen. People are forever scarred from it. If you think you're a burden now, you will be infinitely moreso dead, and gone.

Instead, try to see this as a journey. My new sex therapist said to me that everyone has a "teacher" in their life -- for some people, it's money, and when they lose it all, they're in crisis because it's all they built their identity on. My teacher, she said, is my body, and to learn to treat my body as I would a loved child, whom you love unconditionally instead of feeling anger and hate towards it. I'm trying to work with that, and it's not a new concept, but one I don't turn to often enough.

So there's a lot of work to be done. Our work is cut out for us. Let's not be quitters.

In sisterhood,
Darkhorse

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Re: Suicide seems my only option!

Post  Loulou on Thu Dec 06, 2012 3:51 pm

Kate - PLEASE don't do that! it would be such a waste of YOU. Your family and friends would be absolutely devastated to lose you whatever you may think. I've been where you are but i'm telling you, from experience, that you CAN climb out of the dark pit you are in, it is possible. But you'll need help. Please listen to all the advice here and reach out to a counsellor. And please keep talking to us here.
xx




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Kate I totally understand you.

Post  bhaukti on Tue Dec 11, 2012 9:54 pm

Kate ,,,I TOTALLY understand what you are going through. I have felt so much the same, that this has changed my life so much. This all started for me quite young but I always felt like I could get through it but after so many years of trying so many things and the vulvodynia not getting any better,,, but worse,,, and my long time boyfriend leaving and family and friends not understanding and not being able to accomplish much and losing so much money and time to this, and worst of all being treating like something is WRONG with me mentally and not physically has been so upsetting. Suicide,,,I can't tell you how many times I really wanted to do it, I just wanted to lie down and die, as I felt like there was no happiness here for me and I just couldn't take the pain anymore.
I don't know if you saw my post but I found by accident that something that a doctor recomended years earlier but I never bothered to do,for something totally different (heavy metals detox) suddenly took away the burning and I mean within hours,,,,it was NAC 600mgs (an amino acid) , Vit.C 2000mgs and spirulina. For whatever weird reason it works for me and a few other women who tryed it.
Anyway, my point is that at my lowest I was like you and I thought nothing will ever work,,,,I had this problem for over 15 years. Even now...feeling better,,,I don't feel right,,,after all the grief and upset. I am slowly working my way back into getting some of my self esteem back. I think being in long term pain and that kind of pain and the way it makes you feel about yourself and how others can sometimes treat you,,, has a real devistating effect on one's self worth. I am living proof that even when you think there isn't any hope that there are answers somewhere out there and know your not alone in what your are experiencing, I have been there.

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Re: Suicide seems my only option!

Post  Kate1981 on Mon Dec 17, 2012 1:04 am

Thanks for all your kind words and support. If it wasnt for this forum dont know where id be. Starting Physio and biofeedback next week so feeling a bit more positive and pray to god it helps. Ive just changed from ami which was making me massively depressed to nortriptyline but ive noticed my pain level increase from 5/10 to 8/10. I hope it subsides has anyone else found this. Thanks again everyone for being there its so tough dealing with every day i hate this condition its evil. Hope all my fellow friends are having some pain free days xx

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Re: Suicide seems my only option!

Post  Alana3 on Mon Dec 17, 2012 8:54 pm

Trust me I feel the same I'm recovering from surgery and I'm like manic. I swear if this didnt work I'll probably kill myself, because who will want me then? Yeah, no one

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Re: Suicide seems my only option!

Post  bhaukti on Tue Dec 18, 2012 8:23 am

Kate and Alana keep your hope. I know it's hard when your in pain but there is always an answer. Try some of the things that have helped others. That's what I used to do all the time. I would read something that someone posted and I would try it. Don't put all your hope in one thing as so many women have so many different stories about what has worked for them. We with vulvodynia all know what your going thru so just know you have people here and on the other vulvodynia forums who care about what your going thru.

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Re: Suicide seems my only option!

Post  Alana3 on Tue Dec 18, 2012 6:42 pm

Yeah, but when you just did surgery to make you feel better and you feel worse, what guy is gonna want me like this? They don't want me as it is, and now its worse. At least I was ok before... sorta

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Re: Suicide seems my only option!

Post  Kate1981 on Wed Dec 19, 2012 12:10 am

Alana, how long is it since your surgery? Ive read it can take some time to heal and feel ok. Most peoples stories are very positive and have been cured im not even suitable for it as I have pain all the time this what the gyno said anyway im dont know what to think anymore

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Re: Suicide seems my only option!

Post  Alana3 on Wed Dec 19, 2012 8:05 pm

Yeah, its only been two weeks to the day today, and he JUST took some of my stitches out today, I didn't realize how bad they were hurting me. However, getting them out was horrifying, it hurt so bad. And now everytime I pee it burns, but I expect that the burning will get better. I'm hoping everything else gets better too lol

My doc said that generalized unprovoked wasn't the best to try surgery on it, but it could be done. I don't see why it couldn't, because the skin is all gone. I was freaking out today at the doc, and he said that there is no way it could hurt from the vulovodynia because the skin is all off. So I don't see why that couldn't work for you too? But what do I know?

What have you done for treatments for yours? I know this is so fricken frustrating I feel you!

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Re: Suicide seems my only option!

Post  bhaukti on Wed Jan 09, 2013 2:58 am

Alana, Darkhorse, I feel your pain and listening to your stories has opened my eyes that I wasn't nuts feeling like I couldn't function a lot of times and at times grief stricken that eveyone elses lives moved forward and mine has stood still. Life loses so much joy because you can't even have what the average person has and you start to feel depressed and like a freak. Just don't hate yourselves because the medical industry doesn't have a clue about this and is too busy looking for sex drugs for men. Please don't give up. The one thing that kept me going, thru all the pain and hoplessness, is out of SPITE because of the people like my ex who treated me so horribly that I knew that if I killed myself he would say "see I told you she was crazy". I am so much better now a days but I still feel odd just because of what I have been thru. I also think it is very difficult to do any kind of mental work when your in pain...it's just too hard. I would put all your energy into trying anything and everything to see if something works and even what makes you worse could be a clue. Some women have postive effects from estrogen creme on the area to thicken the vulva and other's have said using baking soda douche because it takes down acidity or like me the NAC,C and spirulina(thinking lately it might be the spirulina) seems to work. I had an acupunturist who was pretty good who told me that it was yin deficiency or low moisture levels in the body and the skin gets dry and the vulva gets more easily irritated. I wonder if that's why the spirulina combo works for me as it seems to lessen dryness in the body. Do any of you notice any dryness of skin in general?

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Re: Suicide seems my only option!

Post  Alana3 on Wed Jan 09, 2013 6:37 pm

Down there? Haha I'm crazy lubed up there its insanity. Even after my surgery lol so I don't think that's my problem! But I guess it COULD be a cause of it, it makes sense, but on the other hand, menopausal woman don't really complain about vulvodynia so who knows really? Its an interesting theory! Is yours generalized and unprovoked?

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Re: Suicide seems my only option!

Post  meelie on Wed Jan 09, 2013 11:40 pm

I agree with you about the suicide. I know I'm old, 65, but I cannot see living what is the rest of my life with this horrible curse. I've been lurking on this site for a while now but when I saw this title I had to reply. I don't want to live doped up even it might work and I don't want to live in this pain and without sex. What a horrible curse. I swear if a man's penis felt like acid burning on it 24 hrs a day or even 12 or 14 hrs a day there would be cure for it by now. I'm so depressed, see nothing in my future. Used to ride horses for sanity, can't do that any more or wear blue jeans or have sex with my husband or enjoy going any where with my loose fitting sweat pants.

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Re: Suicide seems my only option!

Post  Alana3 on Thu Jan 10, 2013 4:01 pm

I ride (well I'm on layup because of surgery) but I never had a problem! Oh I would go nuts, I wish I had an answer for you!!! Have you maybe tried a maxi pad?

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Re: Suicide seems my only option!

Post  meelie on Thu Jan 10, 2013 4:40 pm

I've read that wearing a pad will make it worse, more pressure and all. I tried riding on my English saddle. Maybe if I use a softer saddle.
How do you ride? I mean English or Western and is there a special way you sit. I've been riding all my life and this is really killing me. Sad

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Re: Suicide seems my only option!

Post  Alana3 on Thu Jan 10, 2013 4:53 pm

I have never had a problem riding so I don't know what to tell you. I ride English and do hunters. I don't know my doc said if it were a problem try a pad, but I've never had an issue.

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Re: Suicide seems my only option!

Post  Alana3 on Thu Jan 10, 2013 9:30 pm

I ride in a PJ tho I don't know if that's the answer or not, but I love my saddle super comfy and worth the investment

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Re: Suicide seems my only option!

Post  bhaukti on Sat Jan 12, 2013 8:47 am

Alana, I started out with just pain with intercourse and then over time it turned into a constant raw,burning pain and sometimes my whole butt felt sore, raw and burning,,,,I started calling it burning butt syndrome. When I talk about dryness it isn't about menopause as I always had normal hormonal levels and regular periods and cremes and ointments many times made me worse. I just always thought it was interesting what my chinese doc. told me because I used to get this weird dehydrated feeling in my hands and feet and sometimes my face and when I started doing the NAC,C,spirulina combo the first thing I noticed is that dehydrated feeling going away,,,and then the vulvodynia went away at the same time. Also my eyes felt better,used to feel irritated a lot and skin wasn't as red and sensitive also. I used to think I had that environmental illness because if I went into buildings or stores my symptoms would become much worse like sore eyes,sore throat, facial flushing and the vulva would start burning. Now I wonder if it was just dryness causing me to be so sensitive to things in the air because when I started the NAC,C,Spirulina I could spend long hours in these places and have no problems after so many years of having problems.

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Re: Suicide seems my only option!

Post  abcdefg on Sun Jan 13, 2013 8:17 am

I know exactly how you are feeling. I had a great boyfriend who dealt with my inability to have sex so well. He would tell me that he'd love me no matter what. And then, I broke up with him. Ever since then, I've hated myself for doing it, and now it's too late to go back to him. I've spent so many nights awake realizing that I ruined the relationship with the only guy who would ever deal with a girl who can't have sex. It seems so impossible that anyone would want me now. I try to focus on other things that I can improve about myself to distract myself.

Please do not kill yourself. I know that it feels like nobody cares, and that might be because they never show love. But they really do care, and if you took your life they would be devastated. They love you, I love you, and everyone on this forum loves you <3

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There is always HOPE.

Post  rhiannon75 on Sun Jan 13, 2013 9:47 pm

Yes we do love you. Let me tell you what I've been through...hell. After suffering with all kinds of health problems for years, losing friends, being called a hypochondriac, having a strained marriage, quitting a job that I loved and going through bankruptcy, only to finally find a doctor to diagnose Lupus after 17 years of suffering, get some treatment and start back to work and have my husband finally start to understand and believe me....3 months after my diagnosis that I fought so long and hard to get.... my 17 year old son starts having burning, itching, painful urination and ERECTILE DYSFUNCTION. He had never even kissed a girl or had any relationships. He developed swollen testicles that landed him in the ER twice. He was diagnosed with Chronic Prostatitis at age 17, even though 3 doctors had said they had never heard of a teenager having that condition. His penis actually shunk. Yes, this sounds fake and so imagine what the doctors thought when he told them. He was mortified. At one time he even had white patches on the top of his penis. All tests for STD's negative but doctors basically dismissed him with antibiotics and said he hadn't found the right girl. Can you believe the nerve??? He did have borderline low testosterone and was treated with patches for a month. It was terrible to watch him go through this while all his friends were just worried about what movie to see.

This all happened between his junior and senior year of high school, and over Christmas break of high school, he got sick with a very bad "flu" with a rash all over his body. He couldn't get out of bed. Literally couldn't walk, couldn't use his legs. Once the fever subsided he was able to wobble into my rheumatologist who believed right away that he had something autoimmune happening. XRAYs revealed a fused spine, from an autoimmune disease called Ankylosing Spondylitis. That was the beginning of his nightmare.
His entire senior year he kept it a secret from friends. His future looked grim. He had already received a full scholarship to a great college for Archaeolgy. How would he go on digs that required physical strenght with an a type of autoimmune arthritis that often is crippling? Furthermore, would he ever have sex at all, and who would want him with all these conditions? Ankyolosing Spondylitis is a hereditary disease so he would probably pass the gene on. (I actually think I may have it instead of, or in addition to Lupus but its hard to diagnose in women). Why did he want to live? These were his feelings.

I thought all of my pain and suffering were the end of the world until this happened and nothing could have prepared me for watching my son suffer. I only had 3 months to process the fact that I had Lupus, which is sometimes fatal, and I hadn't even had time to sigh a relief that I could possibly start some treatments when this happened to my son.

To say he was depressed is an understatement. He had to have iv infusions of toxic meds which he developed side effects from. He was already prone to major depression. I thought he would commit suicide. I can't say I at least didn't understand his desire to.

NOW FAST FORWARD: He went to college and made great grades. But still he worried about his chosen field. He dealt with chronic backpain and the ED contiuned. He never had erections. From age 17-19. How terrifying! The prostatitis did clear up though. This past summer he was at his lowest of lows. Wanted to die. No hope for the future, but he pressed on as most of us do because suicide really fixes nothing and it hurts so many people. He mentioned over summer break that he was getting semi-erections but they were nothing like they once were.

Now he is in his sophomore year and just this fall, OUT OF NOWHERE, HE STARTED HAVING ERECTIONS AGAIN! He still hurts all over and has chronic fatigue, but he has not had another flare like the one he had 2 years ago. I feel that all the inflammation in his body and the compression on his spine caused all of it to happen, and I believe his prostatitis and ED and itching and scaly patches were the male equivalent to what we face with vulvodynia. I am just now understanding that my years of pain were probably the beginnings of vulvodynia, and now I am dealing with it as a chronic issue. This leads me to question enviromnetal factors, that he and I have both been sick, and also the role of genetics. Women are much more prone to be open with discussing things but I wonder if any other teenage boys have had this? None of the doctors would address it. Even Cincinnati Children's Hospital said they could not help him.

He was home for Christmas break and his mood is much improved although he still battles depression. MY WHOLE POINT IS THAT YOU NEVER KNOW WHEN SYMPTOMS WILL MYSTERIOUSLY RESOLVE!

HOLD ON TO HOPE! Prayers to you!

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Re: Suicide seems my only option!

Post  EverythingIsDifferentNow on Thu Oct 09, 2014 6:37 pm

oh no someone please tell me she is still alive??

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Re: Suicide seems my only option!

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