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trying to find a new way

I’ve always been one to push things aside and put on my strong face. Try to get through my days and wait until I get home to let the way I feel affect me. I guess even that’s not 100% true. I wait until I get home and am in a room where I feel no one can find me. Hell, somewhere where I hope I can’t even find myself and my thoughts(this usually happens in the shower) before I breakdown and lose my marbles. I don’t let it happen often but when it comes, it comes like a tidal wave. Lately i’ve managed to destroy most of my emotions before they get too out of hand. I’ll start crying hysterically and within 2 minutes i’m telling myself to man up and get over it because I know that it could be worse. I think we all know that. But that doesn’t make what we’re going through any less painful or any easier to deal with.

I luckily have a phenomenal boyfriend who does everything in his power to be supportive and understand and not make me feel any pressure whatsoever when it comes to sex. I know that it is genuine and yet I find myself still angry with him, angry because he just CAN’T be telling me the truth that it doesn’t bother him as much as I think it does. In my mind, i’m deeply bothered that I cannot do for him what another woman can do for him sexually and I feel that him loving me is unfair to him. I love him more than anything in this world and cannot grasp the fact that we will continue to have a normal relationship if I don’t just learn how to grit my teeth and bare it. Truth is, i’ve been doing that since day one with him. I never tell him when it hurts…I never tell him to stop. Not because he won’t and not because he’ll be upset, but because I love him so much that I want him to be happy and i’m willing to sacrifice myself for that.

We’ve been together for a year now and he’s gotten very well at reading my facial expressions. No matter how hard I try, when sex hurts, I can’t hide it anymore. We’ll argue because he doesn’t understand why I can’t just tell him to stop and because I don’t understand why he can’t just let me make the decision for myself that the pain is worth it for his happiness. We then go through that very stubborn phase and don’t speak about it until the next time I blow up.
He keeps telling me that sex is not everything….and i agree. But to me, it’s a very important part of a normal functional relationship. Maybe that’s just in my mind maybe i’m the only one that thinks like that but I can’t get over the fact that he could probably be happier with someone else…someone he can have that intimate relationship with. He tells me he’s happiest with me and I should just let it go. Then i’m angry at him all over again because in my crazy, pain filled, emotional head that means he’s lying, and that he just doesn’t have the guts to tell me how much it really bothers him.

I guess i’ve just realized that it really has nothing to do with him and everything to do with me. Really i’m unhappy with myself because of this problem. I’m unhappy with the fact that I can’t be as sexual as I want to be with the person I love. I’m unhappy with the fact that i’m so damn jaded, bitter, and hurt physically and emotionally from the IC, Vulvodynia, Pelvic Floor dysfunction and every other problem that has sprung up since i’ve been diagnosed. I’m unhappy that at this point I really think i’ve lost it!

Usually i’m the one that talks to other Chronic Pain patients to offer support and friendship. I’m realizing now that I also need to talk about my problems and not hide behind every one elses.

As a side note…I haven’t had sex with my boyfriend in over a month. I have no interest in it, no desire at all. I wouldn’t care at this point if I ever had intercourse again. I’m 22 years old and I know that this is not healthy in any way. My boyfriend still stands behind me and still says that he understands but I feel so broken that it never really gets through to me.

I just want to say to all of the other beautiful women out here that are experiencing similar emotions…you are not alone. I guess that’s what this SecretSuffering is all about…and Susan I love you for enabling us to express ourselves through all of our pain.

Stay Strong…I’m trying too

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Suffering Quietly

Many have asked for updates on my condition and how I am doing. I have learned that because I have so many conditions that there are ups and downs in this healing process. Right now I am in a down as I would put it. The doctor is wonderful and is trying everything and I follow all directions to the tea. In some areas I have made progress but in others I have not.

I feel I have made progress with my Interstitial Cystitis. But my Vulvodynia and Vular Vestibulitis have in my opinion not progressed but digressed. I follow the diet for it strongly. I have gone on a completely gluten free diet and I have followed all instructions. This is frustrating for me as a women. I have constant pain and I feel like the medications are not working for me. I don’t want to scare other women into feeling like they will hit this point as well because they may not. I have other under lining health conditions that make treatment more interesting. I know there is hope that there are other options. I am considering these options and weighing on them heavily.

I also have pudenal nerve damage which is frustrating sense I am a computer programmer and am required to work at my desk sitting for up to 8 hours at a time. The nerve becomes inflamed then the rest of my conditions become inflamed. Its a horrible cycle. I am continuing with the pudenal nerve blocks.

 It has been since the end of october I think and the only progress I feel I have made is in the Interstitial Cystitis. Sex is little if ever. Its too painful and mentally nothing else is pleasing. I want it like everyother women not other ways. I want to be able to please my husband of 8 years like I should be able to.

He is a saint. He has been very paitent. Not to say that he isn’t suffering he is. But he supports me in every way. I love him for that. We were married at 19 and have only been with each other. So this is hard on us. We had a great sex life before all of this. One our friends envied. So for him its hard to go from that to what we have now. He is very needy and I feel at times that I am letting him down. 

My kids and friends have very little knowledge of what I am going through. One they don’t understand it because they don’t suffer it and two I hide it well with a great smile on my face every day. I hide pain so well. But there are the days I can not hide the pain. When I am so tired of it and of suffering. But I focus on the hope of healing. I know there are treatments that work and that I can explore. 

I am looking into those other treatments with my doctor and considering them. We will see how it goes. 

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Suffering Quietly

My symptoms began five years ago after a very traumatic vaginal birth of my first son. Repair that was done during after the birth left me with an extra flap of skin that would get irritated during intercourse. This continued into many issues. I also was diagnosed with Hypothyroid around the same time.

My health continued to spiral downwards and with it my relationships with my children and husband. It affected not just me but them. Then I was diagnosed after the birth of my second son three years later with chronic inflammatory disease, this is an autoimmune disease. Which one, they can’t figure out. But they did figure out that it started with my immune system attacking my thyroid and for some reason has not stopped.

I have learned to manage my joint and fatigue on my own. But suffered from what I thought we bacterial infections and vaginal infections. They were treated that way.  Because of the autoimmune disease my doctors just assumed I was suffering reoccurring infections and most of the time the test came up positive but I still suffered from pain on a regular basis. This began to heavily affect my marriage in the last two years.

Continue reading Suffering Quietly »

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Wish I knew what to do

I have been married for 30 years. I have suffered with chronic cystitus for all 30 years. I never had problems with intercourse until about 3 years ago. All of a sudden the pain during and after is incredible. Pain upon penetration is so bad and then when we would finally succeed at that, the burning begins and burns for hours afterwards.  

I never related the cystitus with the intercourse pain until after reading stories in this site.

I went to the doctor twice during the last several years to find why I started having pain. I thought maybe it was due to going thru menopause.

The doctors would run tests, but when nothing showed up in the tests, it was like I was just forgotten and the task to finding the answer to my problem stopped.

It has really started to affect my relationship with my husband the last several months. For the longest time, my husband was understanding and supportive and finally just quit asking for it. I felt really guilty about it.  

I’m even afraid my husband my have gone and had an affair. It’s been a rough month.

Thanks for listening!    

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Short stories about painful sex and relationships

We now have nearly 650 women and over 80 men who have taken our online survey about painful sex and relationships. I wanted to share a sampling of the stories women and partners have shared in the comments section of the survey. (Only two of the partners have been women.)

I also want to mention that it’s not just sexual/intimate relationships that suffer. Many of the women with whom I’ve spoken have talked about their mothers, fathers, brothers/sisters and children having to know what is going on.

WOMEN:

  1. Because I’ve never experienced pain-free sex, it is sometimes difficult for me to recognize at what point we should stop. I learned as a child to endure pain and not complain. That makes sex more difficult and confused for me. I don’t really have a model of what sex is “supposed” to feel like. It took me about 10 years of painful intercourse before I said anything. My spouse tries his best not to hurt me, but it’s something that hasn’t been easy for either of us.
  2. He is a very supported husband. He does not want me to hurt. It hurts me tonot have a relationship sex with him. i want it and can’t do it. it makes me mad. He is better than I am with the whole thing. i told him to get somedbody else. he said NO!!! He loves me no mater what. To death do us part. Sickness and health. See i have had brian surgery in 1999. Seziure free!!! Then this !!!
  3. Husband will not substitute other activities for intercourse. He won’t stop unless he loses erection. He’s glad I can “do it” again (thanks to horemone creams) but wants me to enjoy it (which I can’t because it still hurts some).
  4. I have been married for 26 years. I am lucky that my husband hardly ever asks for sex any longer. I do however, always feel angry and guilty when he does ask, because I think he should be able to see how much pain I am in, and understand.
  5. I only tell my fiance about the pain during intercourse after intercourse. I often position myself during intercourse so he cannot see my face when I wince or cry. He’s always very supportive of me, and would stop intercourse if I asked him to, but I guess I don’t think it’s fair for him to have to suffer, too.

PARTNERS

  1. After she was diagnosed, I would stop. But she said she wanted me to finish, so she didn’t have to hear me ask (asking includes trying to talk about her condition or trying to create a romantic mood).
  2. Because of her condition and the related pain. I have pulled away form her and am afraid to attempt to get physical as I know that it will cause her pain. This is very hard on me and I know that it must be as bad or worse for her. But God brought us together and will keep us together. I love her too much to let this to control us Sex is very important to me and our relationship but is not the most important. If it comes down to it I will be blessed to be the one who gets to take care of her.
  3. My wife has been worn down by the many doctors that have failed her. She has basically given up trying to correct this situation. Our once heavy “chemical attraction” has be completley ruined. I am still interested … but she’s not!!! I have taken on every suggestion given to us … to no avail. I’m lost as to what to do. We may break up shortly after 15 years of sexual problems with painful intercourse.
  4. JUST WISH THERE WAS A CURE.
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Unable to work…. Unable to continue care?!?

As of late my world has been turned upside down. In Oct 2006 I had a hysterectomy at the age of 21 and since that time I have not be able to work and found out this July I was fired and my medical coverage for me was over 1,000 a month and I don’t even make that on my disability through work. So, I had to take the chance and stop my coverage which means I had to stop all of medication and treatments. Now, the pain is back with avenged.

I have applied for government assistance, SSDI, and adult basic but the lines are so long I am unsure if I will ever get help.

Then also the man that I have been spending the last 9 years of my life left me because I was unable to have a child (yup, that one that won over so many people and doctors because he ‘cared’… hell he was interview for this book). So, on top of that I found out that he has been cheating on me since I was unable to please him with my conditions. And has a child on the way which was conceived when he and I were together. Now, I am trying to rebuild my life, but being alone with all these problems and unable to really take care of my self medically my life has been changing.

I am really glad that this site is up and maybe I am able to find someone out there that knows what I am going through.

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The Beauty of Medicine

Surgery is an ugly thing. Years ago, at a very young age, I began developing severe pelvic pain and female related problems, which is hereditary in my family. On my eighteenth birthday my doctors recommended I undergo a laparoscopy, a surgical procedure used to test and treat many conditions. The dilemma with having this surgery was that the laparoscopy was the only way to eliminate certain diagnoses: like endometriosis. Nervous about going under the knife a third time, I avoided the issue figuring the pain wasn’t that intolerable and an x-ray or sonogram would suffice.

Three years later, I became ill. One morning I woke very worried due to extreme abdominal pain and vomiting that reminded me of food poisoning. Except hours passed, and the symptoms continued so I decided to visit the St Josef’s Candler Immediate Care facility on the south side of town.

After checking myself in, I sat in the waiting room for thirty minutes, only to wait some more once my name was called back to see the doctor. I discovered over the next six months the waiting period was often the worst part of a doctor’s appointment. You are one of hundreds of patients to this doctor: a dot.

The doctor’s test results that day revealed blood in my urine and assumingly this was causing the abdominal pain. I was then prescribed some antibiotics and the nurse drew my blood for further testing. Having my blood drawn became like second nature during my illness too, seeing that I ‘donated’ enough fluids to fill a truck.

Disturbed by the news, I phoned my local gynecologist for an appointment and took the advice of the doctor at immediate care. To no surprise, it took one month for an office visit with my OBGYN specialist, so, for the next month I tried to ignore lower abdominal pain. Two weeks later, after a couple glasses of wine, the following morning I experienced the same shooting pain as I had two weeks prior. Wanting to forget my doctor’s advice three years ago, I tried very hard to smother the fact this could be female related.

Another fourteen days later, my specialist appointment date arrived and a series of tests were performed, on numerous occasions, including pleasant things like ultrasounds, x-rays, sonograms, pelvic exams, blood tests, and many, many medical bills. When the doctor read my file and spoke with me about my history, she strongly advised I quit smoking cigarettes, drinking caffeine and consuming large amounts of alcohol as soon as possible. I was also asked to limit any sexual activity until the test results returned.

A few days later I was called back to the hospital for a visit with the doctor to personally discuss my results. Suddenly, I became very nervous and wished I had just received my letter of good standings in the mail like all the years before instead of this phone call. My specialist sat me down in her office and said I had Polycystic Ovarian Syndrome, which in short, is a disease that overproduces activity in a woman’s reproductive system which can cause symptoms like pelvic pain, irregular periods, infertility and cysts. She also showed me ultrasound photos that exposed many small cysts and lesions around my right ovary.

At this point, I needed to visit the urologist and gastronologists specialty office as well to eliminate other causes of pelvic pain, since the cysts were not life threatening. Another month of waiting, like one of hundreds of millions of people in the world who suffer in pain while waiting to see the doctor or to be healed.

The urologist’s office was awkward because once you’re admitted; patients are required to travel around the facility with urine cups in the presence of other strangers. Usually at the hospitals and specialty offices, I was one of the youngest women in sight and this always made me uneasy. I felt like time was passing me by. The urologist prescribed six weeks worth of antibiotics to heal the constant problem of red blood cells in my urine; it hadn’t ceased since my first day ill in case of infection. An awful procedure called a cystoscopy was performed as well, where they insert a scope and camera through one’s urethra into the bladder to look for disease or damage. Thinking back on that morning, I remember being horrified by my doctor’s suggestion I watch the television screen that was receiving images from the scope inside my bladder to ease my anxiety. And ironically, looking at the monitor made me want to faint. Somehow, watching surgery and the internal organs of a person on television just didn’t prepare me to gaze at my own inner self.

To my demise, I didn’t ask beforehand about local anesthesia for the cystoscopy so I endured the procedure without sedation, which I do not recommend to anyone such as myself who enjoys their personal space. Always ask your doctor questions beforehand, seek out detailed information about each procedure and medicine, and learn to practice deep breathing and try to remain patient through an illness.

Now that the urologist had ruled out any troubles with my urinary tract and I was feeling a bit violated and disturbed by my first physical from a male doctor, it was time to submit my body for more examinations. A gastronologist was necessary to investigate my gastrointestinal tract, and the word alone made me feel uneasy. This whole affair thus far felt invasive, but I attempted to be cordial since I admire the medical field and how hard they work. Be reminded, there are those who taint the medical profession, and like everything else they is always a bad seed to pollute a good crop.

My gastronologist appeared honest and sincere. He was very direct and thorough, and his staff was organized and helpful. Even the two procedures, an endoscope and a colonoscopy, were all right, despite the circumstances of my health. I remember laughing on the table before they put me to sleep thinking they were nice people. But perhaps this will due to the sedation and the drugs that made everything seem alright.

During all this melancholy illness, I was prescribed an abundance of perscriptions from three gynecologists, at least fives trips to the minor ER, the urologists office, the gastrnologist’s office, two visits to the emergency room and an internal specialist. I refused to swallow most of the pills, and I felt like many physicians were distributing medicinal drugs in substitution of service and healing. Just numb the problem, and give us your money, we’ll fix you eventually. I was taking pills for nausea and possessed three forms of pain pill narcotics for the unbearable pain that continued to worsen. It was difficult to think in such pain, almost impossible to converse sometimes and life felt miserable as my head and my body was now feeling poor. But you must not get so discouraged when undergoing a time of sickness; it only prolongs the healing process.

Eventually, all the drugs stopped working and I began taking a higher dose of medicine as prescribed by the doctors. But then, I began to feel anxiety like never before and sleep was at a minimal. I lost my appetite completely. Trying to swallow saltine crackers sometimes made me gag. My weight, went from a mere 122 lbs to 114 lbs in a little over a week. I then began losing about two lbs a week. And taking into account I’m only 5′5″ in height, the weight loss was showing and the pallor was white and dismal . But even after extreme weight loss, my gastronologist didn’t seem to have any answers or aide to my dilemma; instead, he sent me to an internal medicine doctor. When I arrived the internalist asked me if I knew why I was there, and assuming it had been for my tests I realized I truly didn’t. The doctor suggested the pain was all in my head, and that often he and other doctors like my gastronologist work together to treat patients such as myself. That I was one of many depressed people. He felt that I had no real physical problems, and didn’t look like a candidate for Polycystic Ovarian Syndrome because I was underweight and my problems were purely psychiatric, despite any medical records that contested his theory. I left that day with a free month worth of anti-depressants that went directly to my trashcan.

I cried on the drive home from the doctor that day to my boyfriend’s house who was helping take care of me at the time. I weighed 110 lbs, weak as ever, and in constant pain that aggravated my life, my job and my school. I had already been to the emergency room once before and they had also limited any possibilities as well in regards to my vomiting, nausea and anxiety. The only issue discovered during my first trip to the emergency room was my allergic reaction to morphine that I was given through an IV. The only time I was without pain was after being given medicine through an IV, and even that was difficult because I had thin veins that were dehydrated at the time causing bruising and hematomas.

It was like no one knew how to work the machines, give a diagnosis, or stop the pain. I even began to wonder if I was losing my mind. I phoned my gastronologist to speak about my concern at the internalist’s office and express my disappointment that he sent me to another doctor who suggested my problems were psychiatric. My specialist then told me if the internal medicine doctor felt I was crazy, then he would be prone to agree, and could no longer serve as my gastronologist, but would be happy to transfer my records elsewhere. I was outraged. I felt small being so young and sick with doctors who didn’t help you even if you were thinning away. I was discouraged and had trouble connecting with anyone. Generally, these kinds of female problems occurr in women 30 and older, young adults my age were more concerned with themselves than the health of another, or they didn’t’ know how to respond which was frustrating in itself.

Five days later, I was vomiting green bile for hours and took a second trip to the Emergency Room. Dreading a twelve-hour wait like before, to my benefit no one was there at 5:00 AM and the nurses got me hooked onto an IV in no time. Four hours later, after many repeated tests that several doctors had performed before, I was told I had an additional cyst on my left fallopian tube and to desist taking any narcotic pain pills, as I was allergic to them. Suddenly, the allergic reaction to morphine made sense and the next day, late in the afternoon, all my vomiting and nausea desisted and I only had to battle my stiffening pain.

Finally, after six months of waiting, my laparoscopy date was scheduled for August and I began to feel scared for the first time about my surgery. I had to force myself to deep breathe and remain calm and patient during the last few days prior to operation. The pain was consuming my thoughts and in a way I was looking forward to the procedure because the surgery meant the removal of pain. The morning of the big day in the operating room, I remember being very cold and disorientened like in a fog or a dream, lying on a hard table, with at least eight people running around with tools in their hands, speaking in medical terms and bright lights overhead before me shadowed everything together like and a tunnel of light and I fell asleep. I woke about two hours later, in a recovery room with two incisions, no cysts and void of pain medicine to dull the wounds.

Almost two months now past my surgery date, I feel near a hundred percent recovered, and one step behind. Every now and again while I’m dancing, working out, shooting pool or resting, the pain returns and my abdomen feels tender. But this is apart of the healing process, and I’m grateful for finding doctors who treated my problems and relieved my pain. Although, I must now learn how to cope and tolerate with Polycystic Ovarian Syndrome and manage pelvic pain from time to time. Some of my symptoms that were a bit more personal were not explained by the cysts in my reproductive areas. My doctor and I anticipated the possibility of Endometriosis, but she also warned me sometimes women’s pain in unexplainable. Fortunately, there was no evidence to indicate such a problem, and I am blessed not to have Endometriosis, which is a painful chronic disease. Nonetheless, I fight the urge to feel disheartened and cheated by the fact all my questions were not answered and the pain will never be fully gone. It will just have to become apart of me.

I wonder now how I would have managed to pay for all this without medical insurance and the financial assitance of my family. Somtimes thinking of all those who cannot afford to seek help makes me doleful. And it took me all this grief to remember that overlooking problems is always ineffective, and ignored troubles will surely seek you out. Looking at the statistics, most women who undergo these problems range ages 30 and older, which stripped almost a decade of ‘good health’ away from my youth. Even though I was forced to change some habits of my lifestyle, and must tolerate a condition from now on, I am grateful that my health was not far worse. Keep in mind the human body is not indestructible, no matter the age or gender, and sometimes illness may arise to those we least expected. Cherish your health, preserve your body and mind and take care of the skin you’re in so not instigate misfortune of health.

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Thank you

I wanted to thank you for this site. When I discovered it (through an IC Help Newsletter) I almost shouted Hallelujah, it’s about time.  Someone, somewhere, someplace is validating what I have been experiencing for years and have had no answers.  I discovered when I got married at 27 that intercourse was painful and I didn’t know what was wrong with me. The doctor couldn’t see anything upon physical examination (as have any doctor’s since then). When my husband left me at 35 one of the things he told people was that I was frigid.  He didn’t understand I experienced real pain and of course that would affect my feelings toward sex, even though I continued to try.  I am now 47 and have been married 8 years to a wonderful man who is very understanding.  The problem is that he doesn’t want to hurt me so if there is any sex I have to initiate it and I really want him to initiate too.  And yes, it still hurts.  It wasn’t until a little over a year ago I was diagnosed with Interstitial Cystitis.  I never had any Urinary or Bladder infections to link this too.  I was one of the lucky ones in that it only took a year to get a diagnosis. This last spring I was diagnosed with Fibromyalgia, although I think I have had longer.  Several years ago they were at a loss what was going on so the doctor said I had Chronic Fatigue. It only recently got to the point that I can no longer work at home or on the job.  Oh, and yes I also have IBS.  That’s a bit of my history and I guess my point is that I too thought all these things were some how related.  (I was shocked when the Urologist was diagnosing me for IC asked if I had painful intercourse…my heart skipped a beat and I thought I might be healed…but no answers or help was provided).  The Gynecologist has only provided Estrogen Cream.  I have scoured the internet for every site I could find.  While I have found helpful info on FMS, IC and IBS there is very little info on this issue of painful sex and vulva pain.  I am so glad I have found you and my hope is that through this there will be an acceptance and awakening to this issue (just as the ICHelp.org, Interstititial Cystitis Network, has really been working to bring IC into the light, although most people still have never heard of it, they are getting funding for research).  My greater hope is that I will find comfort here and hopefully some answers someday.  THANK YOU!!

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no longer suffering in silence

As a current patient of Dr. E’s, I find this site to be a god send!  I have had a very difficult year and a half with several ailments including IC, chronic pelvic pain, irritable bowel syndrome and chronic fatigue syndrome.  I was in the same position as many of you…doctor after doctor, test upon test, all with no solutions.  When I stumbled upon Dr. E, I was in the process of having another needless surgery.  After two and a half hours of crying at my first appointment with Dr. E, I finally felt that there was actually a ray of hope.  My husband was delighted that someone finally admitted that I really did have problems and they weren’t all in my head.  Believe me, I was reluctant at first!  It took over three months for me to believe that Dr. E and his staff could really help.  After two rounds of bladder instillations and getting therapeutic relief with drugs and therapy, I started to feel so much better! I’m finally on the RIGHT road!  Dr. E and his entire staff are just wonderful; the caring and compassion they project are tremendous assets when you are dealing with these horrible diseases. However, I am still afraid of sexual pain.  It has been a long time since I’ve had relations with my husband and it’s a big obstacle for us to overcome.  Granted it, he is very understanding but it does take it’s toll on your relationship.  The pain is so intense afterward that it isn’t worth it for me; I actually become physically sick from the discomfort and feel terrible for hours.  Are there any suggestions or comments on how to overcome this fear?  My heart is with all of you!

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My saving grace

This isn’t the beginning of my crazy story but I think if I tried to write the entire thing everyone’s eyes would cross and you all would never want to read again! Lol. I’ll start with the important stuff.

When I was 16 yrs old  I started getting that funny burning feeling whenever I’d go to the bathroom, run too much, work out too hard, get too stressed out, or try to have any kind of sexual activity. It came and went over the next few years but never stayed around long enough to make me want to talk about it or have to tell anyone that my vagina felt like I had been sitting on a blow torch. That somedays is hurt so bad it made me sick to my stomach, get the chills, and have to attempt to pee every 3 seconds…unsuccessfully. I tried to tell myself that I had done something that made me deserve this and that when it was meant to go away it would. For a long time I just passed it off and tried to continue on with my life which kind of, sort of worked until my second year in college.

 I came down with a nasty, devil horned, fire breathing, extra burny, bad karma having UTI when I was 18. I let it go for too long and ended up in the hospital for 3 days. They put me on massive amounts of antibiotics and told me to check back in in 2 weeks. 2 weeks later I was feeling much better and it almost seemed as if everything went away. One week after that I was in the worst place of my life which continued on until about 8 months ago. After it got really bad I went through 4 more emergency room visits, 5 different gynos, 3 new urologists, about 12 different other kinds of doctors, 2 laparoscopies, endoscopies, and colonoscopies, every ultrasound offered in the world, to have them tell me that there was nothing wrong. That it was in my head and that I needed to see a therapist. Great! Thanks. Very helpful!

 I ended up taking a 4 month medical leave from my job because it was to the point where I couldn’t even stand up or walk very well let alone make it through 5 minutes without running to the bathroom 435 times. I went home to stay with my parents in Pennsylvania until we could figure something out. One day, after spending hours on the phone trying to get appointments with every uro-gyno I could find in the country my cousin told me in passing about this doctor she had went to that she thought might be able to help me. I reluctantly made the call thinking that the receptionist was going to brush me off or they were going to tell me that  they didn’t have anything available until August of  2010. It was the first ray of light that I had seen in years. I got off the phone with Janet from Dr. E’s office that day and cried for hours because for the first time in forever I felt like someone understood and didn’t think I was crazy.

 I began treatments with Dr. E in December of 2006 for IC, Vulvodynia, and Pelvic Floor Dysfunction. I changed my entire diet, took my meds religiously, went to physical therapy, changed my negative attitude about life into a positive driving force, got rid of my stupid boyfriend that never understood the pain, studied every single aspect of IC and painful bladder syndrome and jumped head first into the IC and sexual pain enlightenment movement.

The more we talk the more they can’t ignore it anymore. The more we tell our stories the more young women feel comfortable speaking out about their pain. This is something that affects so many women and even some unlucky men and we all just need to be heard. Our pain isn’t  weakness at all but something that helps build up our inner self and gives us the strength to pull through no matter what kind of setbacks our bodies throw at us. Stay strong!

I need to say thank you to Dr. E (and everyone at the office) for being my saving graces and to Susan for giving me the opportunity to get this all out. I don’t know where I would’ve been if it wasn’t for the all of you!  You’ve helped me more than you can ever know.

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