Everyone Lurking and Beyond Has to Read This!!
May 28, 2014 at 6:36 pm #9191
I would say I am going to keep this short, but I’d be lying. There is nothing short about this – so if you can get through this, God bless you. But what I am about to say could potentially help so many women with self doubts or any doubts at all. Right now, I am helping me, by venting about an AWFUL HORRIBLE experience I had today in which I feel horribly victimized YET AGAIN by the horrible medical profession that is “so called” designed to help women and their health (rolling eyes).
You see, if you don’t know me, a brief introduction would let you know I have suffered for TWENTY THREE years with vaginal pain, pelvic pain, vulvodynia, vestibulitis and the big “V”. I was diagnosed in 1993 by the “so called” professionals. The next three years were spent going through guinea pig treatments, including surgeries, throwing vinegar on my skin like salt on a canker sore (only worse), having Bartholin Gland injections (without anesthesia, local anesthetic and without being prescribed pain meds for the aftermath). Well why should I have been? It was all in my head anyway right? It wasn’t a “real” condition right? And, for the “so called” professionals? Their penises still worked so they could go home at night, sleep well, eat well, exercise right and HAVE SEX with their partners and girlfriends OR BOTH – – so it wasn’t THEIR problem right? I was the one with the problem right? And for TWENTY THREE years I have had the same OBGYN. I have been SO loyal to him, it was important to me, after going through four years of IVF to conceive my daughter (not because of the big V, because my husband had zero percent morphology), it was important to me that my OBGYN of TWENTY THREE years deliver my baby.
Today, I wanted some of that same loyalty back. I wanted someone to support me, to understand, to embrace my solution and my answered prayers. But I didn’t get that. I got a harsh dose of reality. Today, I went for my yearly examination as I always do every year and saw my OBGYN, as I do every year, but this time, with a light in my eye, I was going to excitedly speak to him about the prospect of being cured! I was excited…until I was met with the harsh reality.
You see, I stopped talking about my pain, my sex life (or lack thereof) with my OBGYN some time in the 1990’s. WE stopped talking about it. HE stopped asking! I didn’t complain anymore so let’s face it, there was nothing for HIM to try to fix was there? But I have suffered in silence for long since he had forgotten that his patient of TWENTY THREE YEARS, who met her partner in 1999, who married in 2002, who started infertility treatments in 2003, who suffered through four rounds of IVF, who delivered her baby in 2007, THAT patient STILL HAD THE BIG “V”. But the harsh reality? Wasn’t his problem right? Was mine right? There wasn’t any solution anyway right?
The medical journals continue to pour out, the conferences continue, the “so called” experts still meet for their golf games, their royal balls, their expert conferences. They have developed new pioneer ways of treating the big “V” right? They have developed laser treatments! They have decided that you can only use one type of laser because the others burn your healthy skin and not just the painful skin right? Well how did they determine this? They had to have women to practice on right? They didn’t practice on goats right or sheep? So, while they are rubbing elbows at their conferences, finding new “solutions” for their patients, “I” have been going on with my life for TWENTY THREE YEARS with no cure, in silence, suffering, BUT…..living. And other women are being experimented on and these “so called” experts – they haven’t really helped people. There are no cures out there. Okay maybe they have helped minimize the big “V” for……..hmmmmm……..some people…….MAY-BE but I’d like to see the list, the forum where I can talk to them, the place where I can get the support from these women who have been cured. I bet I won’t find any!
So my “so called” expert sees me today at my yearly exam. My expert says to me, “I hear you are getting surgery. What kind of surgery are you having?” I laugh at him and say, “Are you kidding me? I wouldn’t be discussing a foot surgery with you!” And then it’s all down hill from there. My joke is lost on the seriousness of the situation and the ignorance of this expert. I point out Dr Pacik’s letter to him (I asked Dr Pacik to write me a letter, which he did after hours, painstakingly, to assist me to speak to my physicians) and I ask him to read it. The expert asks me why Dr Pacik had to write me a letter. I tell him I have suffered in silence for TWENTY THREE YEARS with my condition and I couldn’t tell people. His reply?……………….”Well, why not?”
I wanted to scream so loud but instead I steadied myself, sitting half naked on the exam table…vulnerable as I was…”Because I have lived with embarrassment, shame, guilt, feelings of low self esteem…” He nods his head as if pretending he cares. I am starting to cry. I can’t believe he doesn’t get it. TWENTY THREE YEARS this expert has been my physician. I thought he understood. In the 1990’s he advocated for me…to his peers. Alas, finding no solution. Once again, the expert begins speaking, “I have looked at his website, it’s SLICK”. I can’t believe my ears. He goes on, “He is a plastic surgeon, I don’t know him, I can’t write a referral for you, my organization of fathers of gynecology won’t allow me to do so, I can’t advocate for a procedure and a physician I know nothing about”. These are the words I hear. The expert continues, “You know in California, people are going into plastic surgeons to have their G-Spots enhanced, their labia professionally done and there is a lot of criticism about this in my profession”…………….”Stop!” I say to him, “Are you kidding me right now? I am not going to Dr Pacik for G Spot enhancement, labia reduction, libido enhancement, a tummy tuck, my breasts augmented! I am going SO THAT I CAN BE NORMAL!!!!!!!! I am going to have my vaginal spasm reduced to a whining, crawling shivering nothing so I can have SEX with my husband!” The expert nods again as if pretending to care…
Then he says it. “You don’t have vaginismus you have Vulvodynia”. I tell this expert, “Really? Because my skin doesn’t hurt me anymore around the opening to my vagina!” He exclaims, “No?” and then adds, “Well then you must have EVOLVED”. Is that a medical term? I want to punch him in the face. I can’t believe what he is saying. “Evolved?” I ask, “What do you mean by that?” He can’t answer me. I go on to educate this expert that my pain is more at six o’clock (you see I am speaking his language because the experts of gyno see your vagina as a clock) So, if you hurt near your bum, it’s six o’clock. If you hurt near your pubic bone, it’s twelve o’clock. So I continue, “It has hurt me around 12 o’clock but this hasn’t been for many years – it now hurts most at six o’clock”. He is looking very puzzled and curious that I have never mentioned this perhaps.
Then I ask him the loaded question, “WHEN WAS THE LAST TIME YOU ASKED ME HOW I FELT? WHEN? WHEN WAS THE LAST TIME YOU ASKED ME ABOUT MY SEX LIFE?” He is stumbling so I assist him with the answer….” IN THE 1990’s!!!!” So I tell him I gave up. There was no cure for me. I was tired of being poked, prodded and probed. I was tired of the “so called” experts telling me they could cure me only to see that they can’t. And then…………I found a little girl working at a salon near my home…………….who just happened, just so happened, to have been one of Dr Pacik’s patients. And for ONE YEAR I listened to her talk about herself. I asked curious questions about this so called “Vaginismus” and bravely, I finally confided in her that “I” too had this condition and had suffered with this for TWENTY THREE YEARS. She encouraged me to contact Dr Pacik. And I did. And it’s been a roller coaster of emotions since then and I faced my fears, I came out to all my physicians, told my whole story, robbed myself of all my clothes, standing naked in front of everyone, confiding in strangers that I had no sex life, that I was “broken”……..”down there”. Split wide open like a huge wound gushing forward and spilling out over everything. I had nothing left. And, I felt VERY LIBERATED….until now…until today….when my “so called” expert saw me for the first time in one year and talked to me about Dr Pacik, a man whom he knows nothing about, about Botox which he knows nothing about, except that it helps painful muscles spasms, and whose website he calls “SLICK”. And here he was making me doubt my own integrity, my own intelligence, my own faith in humanity, by telling me he would be cautious, that he wouldn’t jump into surgery at the “astronomical” cost of it, that there was no long term follow up and no way of knowing if this would help or not and then telling me, in not so many words, that perhaps Dr Pacik had lied about being FDA approved! And then, he puts insult to injury……he calls me “DESPERATE”.
“Desperate?” I repeat the word to make sure I heard my “so called” expert correctly. He doesn’t answer, not even making much eye contact at this point. And then I say again firmly, “I HAVE BEEN SUFFERING FOR TWENTY THREE YEARS WITH THIS CONDITION. I HAVE GONE TO ALL YOUR EXPERTS, I HAVE DONE ALL THE GUINEA PIG TREATMENTS”………..and then I whisper, crying, “Desperate?” “NO”, I say, “I am not desperate, I have gone on and lived my life, despite nobody being able to help me. I have a strong marriage, despite being “broken” and I have had a healthy child, a professional, human helping, job, a Masters Degree and two national certifications, despite the BIG V. “No”, I say to him, “I am not desperate. Desperate was Marjorie Lee Wantz when she became Dr Jack Kavorkian’s SECOND assisted suicide in 1991. My expert raises his eyebrow now. “You didn’t know?” I ask him, “Look it up”. I go on to educate him that Dr Kavorkian helped a woman in 1991 to end her life living with “chronic pelvic pain” (you see that’s what the experts like to categorize you as when they can’t come up with a definitive diagnosis or definitive resolution – they just lump you under the umbrella of pelvic pain). And poor Marjorie Lee Wantz had an autopsy after she died and even in death the EXPERTS said “it was all in her head” because “no pain disorder” could be found. You know why? Perhaps? I mean I don’t have a crystal ball but poor Marjorie Lee Wantz could finally RELAX. Her pelvic muscles weren’t all spasm in protective fashion after so many guinea pig treatments. She finally could rest – in death. SAD…
So, after leaving my OBGYN office today, I cried and I felt victimized once again by a medical profession who cares more about Viagra and Penis Health than a woman’s body and woman’s right to be perfectly normal – as ‘they’ are…and with nobody to turn to and nobody who understands, I take a chance…and I call Dr Pacik’s office. My gut can’t be totally wrong can it? And I ask the secretary who I can speak to about a “situation” that happened today…and I get Ellen, Dr Pacik’s surgical assistant and I tell her this whole story, not in such eloquent fashion – but in a more angry, saddened, disappointed and let down fashion. And she educates me. She explains how Dr Pacik started and she tells me, from her heart, how they became who they are, how they ended up starting, how Dr Pacik has put so much of his own money down to help people like YOU and LIKE ME. How Dr Pacik has been through litigation and had to fight those “so called” experts because they have taken him to court, accusing him of mutilating women of victimizing women! BUT the reality? I haven’t felt more supported since happening, accidentally, across Dr Pacik, and his Team of people. I haven’t felt any light of hope on curing the BIG V until I was introduced to Dr Pacik in April of this year.
And the reality? Nobody else in the NATION is helping women like YOU and like ME other than Dr Pacik. Nobody is taking the time, developing the skills or even TRYING to help women like YOU AND LIKE ME. Believe it.
I can’t tell you I will have success with Dr Pacik as I haven’t undergone the surgery yet. My surgery is scheduled for June 30th. But I can tell you this…in TWENTY THREE YEARS nobody has cared about helping me or trying to help me or cared about my feelings or asked about my feelings or how my husband feels or how WE are doing…until I met Dr Pacik and his Team. And, certainly nobody has cried with me, as Ellen did today, silently, as I spoke about my feelings. Because they get it. At the very least Dr Pacik and his TEAM GET IT.
June 30th will be my surgery date. I will embrace this date and work hard and go through the process because I believe in the work Dr Pacik is doing, even before I have met him or been through his program. I believe in it. After all, what do I have to lose? I have already lost TWENTY THREE YEARS of a normal healthy sexual life and no EXPERT has cared until I met Dr Pacik and his Team. And no matter what happens, I will stand steadfast that Dr Pacik and his wife Janet (who helped Dr Pacik refine his technique with her outside point of view and fresh look at the situation) are doing a WONDERFUL thing by continuing to assist women like me (just this one starfish) because it matters to me in my life and so it matters in theirs…
WE ALL DESERVE TO BE SUPPORTED AND LOVED AND BE HEALTHYMay 28, 2014 at 9:41 pm #12877
Profound. Yours is unfortunately the story of many. We can only fight back as you did.
I look forward to trying to help you overcome.June 2, 2014 at 4:53 pm #12898KimParticipant
23years, thank you for sharing such an incredible story! I have no doubt that this procedure is going to change your life! Wow, I look forward to reading more updates on your journey to full & complete healing 😉
KimJune 16, 2014 at 12:31 pm #12967Quote:Quote from 23years on May 28, 2014, 18:36 June 30th will be my surgery date. I will embrace this date and work hard and go through the process because I believe in the work Dr Pacik is doing, even before I have met him or been through his program. I believe in it. After all, what do I have to lose? I have already lost TWENTY THREE YEARS of a normal healthy sexual life and no EXPERT has cared until I met Dr Pacik and his Team. And no matter what happens, I will stand steadfast that Dr Pacik and his wife Janet (who helped Dr Pacik refine his technique with her outside point of view and fresh look at the situation) are doing a WONDERFUL thing by continuing to assist women like me (just this one starfish) because it matters to me in my life and so it matters in theirs…
Hi 23yrs. This is a profound post and please, please know that your June procedure will go so, so well and we are all here to support you!!! Sending you huge hugs!!!!June 29, 2014 at 3:27 pm #12997
Good luck to you tomorrow as well as the other patients who will be treated. I know everything will go well! Sending you all hugs and support!!!June 30, 2014 at 10:59 am #12999hereisnowhyParticipant
Good luck on your procedure today and tomorrow, 23years!! And good luck to the other 2 patients as well. I just read your post and I am so heartbroken to hear that for 23 years you suffered. I suffered for about 4.5 and that was too long. I am so excited to hear about your progress with the treatment! I just know it will work for you! I had my procedure 2 weeks ago today and I am already seeing incredible results!!!July 1, 2014 at 11:15 pm #13002
Thank you very much! As soon as I get back home I plan on writing so anyone can benefit from my experiences. I’m also going to explore ways to get the word out there about the condition and the treatment. I have to tell you that the past 48 hours has been a real eye opener. My heart is so filled with so many emotions, for myself but also for others. I actually feel so much stronger about cutting down the barriers and assisting others to gain confidence with themselves. We’ve all cut ourselves down and OTHERS have cut us down — it’s not right that us women are treated like second class citizens by most of the medical community. Not one more woman should have to suffer not one more day, not one more hour, not one more minute! Not one! More later~July 2, 2014 at 5:40 am #13004
We had a very meaningful counseling session yesterday with our three dilating divas. We discussed the correct use of dilators, how to transition from dilators to intercourse (and gynecology exams), overcoming anxiety, overcoming “leg lock” (the normal closing of the thighs to prevent entry), intercourse positions for pelvic floor relaxation, the role of the partner in the dilation process, keeping a daily log and sending it to Dr. Pacik, working on libido and bringing romance back into the relationship and much more. Each woman made important contributions to our discussion as well as the two mothers who were there supporting their daughters. Thank you 23 years for your meaningful contributions. As the veteran you did not want to be, you helped the others greatly!July 2, 2014 at 6:52 pm #13008
When I read your post while in the car, I couldn’t help but feel like we were on the same “wave length” of sorts – that is, in regards to “Veteran”. Here was my post from July 1st on Face Book to my family/friends – it won’t be what you expect but it does contain “Veteran” of another sort: This was 1 day after the procedure and we had just gone to a magic show with my 7 year old at the Palace Theater:
Tonight, I saw a man sleeping on a park bench. I had just bought little trinkets for “Sam” and paid $5 out of a $20. I still had $15 left. “Look Sam, that’s sad. He has no home.” Sam looked over and spoke about her compassion with me. We decided to walk over.
He was lying on the bench in a leather jacket, as hot as it was, his face with obvious battle scars, his fingernails long and dirty. I stood back but gently nudged him. He didn’t wake. I noticed that a hat was lying on the ground. It said, “United States Marines. Veteran” on it. I spoke to him a little louder. I nudged him a little harder. He still didn’t wake. I picked up his hat and put the money inside and folded it and then placed it securely under his hand, hoping it would be safe until he woke. People were passing in cars by the street and I saw them watching us. I’m sure they had their thoughts good and bad. We left him then. Still sleeping.
In the past 48 hours, I’ve been through my own kind of hell, but after 23 yrs, I feel someone has paid attention. I wanted to pay it forward. I wanted to give a little back to the universe. Someone was helping me after all, even if they can’t save everyone, it mattered to me so it mattered to them.
That $15 to the man on the bench will really matter to him and so, for this one moment in time, it mattered to me~July 2, 2014 at 8:34 pm #13009
Wow! Beautifully said.July 4, 2014 at 8:35 am #13017
Hi 23yrs! I am so, so, so happy everything went well for you this past week. I was thinking about you so much as well as the other 2 gals and sending up positive vibes and prayers. My husband is a Veteran and just reading your above story made me cry. So, so incredibly beautiful!!!! Thank you for throwing another starfish back into the sea and making an important difference!!!! Sending you hugs!!!!
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