New Here: 28 and a decade of pain!

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  • #9128
    mer
    Participant

    Hello,
    I’m so happy to have found this community, but also a bit nervous!
    I’m 28 and live in Canada. I have had vaginism symptoms since I was 18, and honestly I had symptoms that could be related to it before then too. I’ve got a bit of a story as I’m sure we all do, so please bare with me. It’s my first time ever really sharing it with people who aren’t yet another doctor!

    Sex has always been painful, but there have been different levels and reasons for the pain. I would always have bad internal pain and bladder pain… regardless of position or what I did. I would frequently need to stop sex to pee! After years of suffering and trying to explain to doctors, this lead to a diagnoses of Interstitial Cystitis. I took elavil for 2 years and totally changed my lifestyle and diet. I saw huge results after those 2 years. I didn’t have to pee every half an hour, I didn’t have constant abdominal pain, and sex didn’t hurt my bladder!

    What did happen however, is that I was so conditioned to feeling pain in my bladder, that my pelvic muscles started cramping up. It was always sort of there, but my partner has always been patient and slow going. At first we could get through it by just taking our time. For a while that’s how it was. As long as we were super slow with sex there was some pain and tensing but with enough time my muscles would relax.

    I knew it had the potential to get worse so I looked for a physiotherapist who did pelvic floor work. At the same time I was seeing a psychotherapist for unrelated things but my pain management and intimate relationship was still something we did address from time to time. The pelvic floor physiotherapy seemed good at the time, but I actually found my pain increased, and I started having terrible muscle spasms. Turns out kegels are actually really bad for IC! After a year of struggling through physiotherapy and finding myself in the hospital with terrible muscle spasms.

    In tandem with all of this, my periods were getting worse and worse- also landing me in the hospital. This led to a barrage of birth control pills to try and manage the pain. With all the different pills I tried, I started getting yeast infection symptoms and menopause vaginal symptoms. Queue the barrage of creams and probiotics!

    Currently, sex is extremely difficult. Living where I do in Canada, I have waited anywhere from months to years to see doctors. I waited a year to see the IC doctor, and I waited months each time I needed to see a GYNO. The first gyno I saw dismissed my pelvic floor spasming and now routine tearing with sex and exercise and told me to relax , use the creams she gave me, and it would clear up! I saw her 3 more times before asking to be referred to someone else.

    Two weeks ago I saw a new gyno, she was excellent. I spoke with her for 2 hours about my experiences with painful periods and painful sex. She thinks I may have endometriosis but they aren’t willing to do a laproscopy test yet. I am now two weeks into visanne a drug recently approved in Canada for the managing of endo. So far it has made a drastic difference in the pain I was feeling there.

    As far as my pelvic muscles, and the vaginal tearing I keep experiencing (yes, I really do tear. It’s not a sensation, they found tears when they did the exam) they gave me a new cream to try to help the tearing. I was tested for every manner of infection and nothing. They gave me no suggestions for this pain and said it could just be that I have a sensitive vagina????

    Well, I have read about vaginism before, so I dug out my books and read again. Everything I read is on par with what I have been experiencing with sex. But in addition, I also tear. So I have decided to be proactive about it while I wait another few months for my follow up in regards to the possibility of endo. I bought my first set of dilators. I’ve been reading about them for years and it really seems like any approach I take will be missing a step if I don’t include these. I am seeing a natruopath as well and going for chiropractic adjustments which I find helpful for my whole pelvic area. I have taken huge steps to reducing my stress, improving my sleep, and managing anxiety around sex.

    I’m anxious about trying out my dilators. It’s not so much I’m afraid of pain or using them… it’s just that I’ve been trying for a decade to get help and treatment I’m terrified they wont do anything for me. My doctors don’t seem to have any plan in place right now for even figuring out what the pain is let alone addressing it. Though I will admit after years of suffering with painful periods I’m thankful they’re at least looking at that.

    I’ve had the same partner for 6.5 years and he’s amazing. He’s been incredibly supportive through this whole thing. He comes to appointments with me, talks to the doctors and shares his perspective, has come to therapy, we even went to a sex and disability workshop together to see if they had any ideas for us. He reads the books and when we try sex he’s very patient, calm, willing to try things, and always stops when we need to. But this has been an issue our entire relationship and I don’t feel like it’s improving.

    We’re both feeling positive about the dilators after everything we’ve been reading. I’d love to hear from others, and I’d love to hear how you get your doctors to take you seriously and validate what you experience. I feel like we’re constantly advocating for ourselves. I’m 28 and I feel like I’ve been missing out on one of the best experiences in life. Foreplay is great and all… but I’d like to try and make a baby some day and actually ENJOY the process, LOL

    Thanks for reading my big ‘ol story

    #12595
    mmHeather34
    Moderator

    Hi mer. Welcome to the Forum and thank you for your post. I am so, so sorry to hear of your struggles with vaginismus. I, too, suffered for so many years with primary vaginismus, visited so many doctors, and tried several different treatments. I can totally relate to what you wrote of your experience with a doctor telling you to just try to relax and it would clear itself up. This is beyond frustrating and there are no words to describe how it makes you feel. I am glad you just recently saw an excellent gynecologist. There needs to be so many more of them out there like this and, as you wrote, I too feel like we are constantly advocating for ourselves. While having primary vaginismus, I visited a gynecologist and actually printed out a 1-page document on what vaginismus was and how the symptoms that I was experiencing at the time matched this, and she immediately dismissed this and said I had vulvodynia. She also said she would never try to examine me again until I visited a sex therapist that she recommended. I never returned to see her and felt humiliated. Dr. Pacik was the first doctor that my husband and I met that took us seriously and understood vaginismus thoroughly. And, so importantly, he cared and you could feel this through his communication and shared frustration over so many failed treatments in the past. I had the Botox treatment in June of 2011 and was cured. Following the procedure, to continue to advocate for women with vaginismus, I brought pamphlets as well as a copy of Dr. Pacik’s book to all of my ob/gyn appointments and gave them this. They were very interested and inquired more and it helped me to spread the word about vaginismus and, in essence, gave me a means of communication when I could not find the words to describe it and explain what I had gone through. I would definitely suggest that you and your partner read Dr. P’s book. http://www.amazon.com/When-Sex-Seems-Impossible-Vaginismus/dp/0983013403/ref=cm_cr_pr_product_top/186-4575422-6465208

    Dr. Pacik has written:

    “It has been two years since I published my book When Sex Seems Impossible – Stories of Vaginismus & How You Can Achieve Intimacy. Part of my vision for writing this book was to tell the story of vaginismus, as told to me by my patients. I wanted vaginismus sufferers to know that they are not alone. I wanted them to know that health care professionals are committed to learning more about vaginismus. I wanted them to know that there is a cure. It was important to me that this book offered important medical information and first-person stories, including a new treatment option (Botox injections and progressive dilation under anesthesia). This treatment program has helped over ninety percent of my patients with severe vaginismus overcome this condition to go on to have pain-free, intimate relationships. With the help of Joni Cole, my co-author, this book was made a reality – the stories of vaginismus would finally be told. Hundreds and hundreds of women have read this book over the past two years and many have told me that they could not put the book down once they started reading it because they felt as if they were reading “their own personal story”. Many of them have always felt like a “freak” and now they knew they were not alone and the only one suffering from this condition. This book gave them new hope for a happy, healthy life that was free of pain from penetration or intercourse.”

    I think it is beyond amazing that you have the incredible support of your partner. I also think it is excellent that you purchased your first set of dilators. Regarding anxiety about trying them, I can whole-heartedly understand this. Having gone through so many treatments too, I was terrified that nothing would work to help me overcome vaginismus. I seriously get these feelings so much. With the encouragement from my hubby, I had the procedure and then used the Pure Romance Dilator set following. By practicing with the varying sized dilators, I cannot even describe in writing how much it helped me. Physically, I did this for 2 hours per day and slept with one every other night. This allowed me to become stretched which eliminated my pain altogether. Mentally, it helped me as I became more and more confident that dilating did not hurt and also dilated for a couple of hours in advance of transitioning to pain-free intercourse. I want to share the link for the second issue of the VaginismusMD Newsletter that discusses all-things dilating. Specific topics include: Styles and Materials of Dilators, Getting Started with Dilation, Anxiety Control, Advanced Dilation Techniques, and Transitioning to Intercourse. http://www.vaginismusmd.com/vaginismus-resources/vaginismus-newsletter-archive/ins-outs-vaginal-dilation/

    Ok, now that I have written an entire book (my first post following our vacation in NJ), I will sign off for tonight. Please, please know that I am here for you and you have my support and are not alone with this at all. I look forward to reading your posts. Sending hugs!!!

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