How the hyman and endometriosis be part of the problem

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  • #22876
    Lillyblue
    Participant

    My story with vaginismus is long. And now, at age 48, I’ve been told something that no one ever told me before and I wish they had. Actually, I’m a bit frustrated with the medical community for denying me this information at a much earlier age. It could have prevented me a lot of pain and humiliation.

    I have had pain with sex, tampons and exams since my first foray into penetration which was a pap smear at age 22. My boyfriend and I were considering sex and I figured I should get an exam and some birth control first. But that exam was so painful that my doctor gave up on me and didn’t continue. An initial attempt at sex afterward was also a no go. I couldn’t figure it out because I had no history of abuse or trauma and no hang up about sex itself. In fact, I wanted to try it, but my body just wouldn’t let me. Fast forward a few years. I married that patient boyfriend and we still could never have sex. So I saw a doctor about it who diagnosed me with vaginismus and gave me a pack of dilators and lidocaine. After much pain and work (like an hour a day) and graduating up in size, the dilators eventually did allow me to have sex (but it took a couple of years). But sex could never happen w/o my first doing a round of dilators and lots of lidocaine. And it was still painful, just not impossible as it was before. We tried for 2 years to get pregnant w/o success. Then tried artificial insemination as I thought the answer was to bypass my vagina and just get the sperm in there. But that process was ridiculously painful and worse than sex. And anytime I laid off the dilators for any more than a few of weeks, I almost had to start over in dilator size. In other words, I realized I was a slave to the dilators and had to keep doing them forever. They are not a cure, just a temprary technique. Stopping them, makes you have to srat over again later. That was not a life sentance I was gonna give myself. So my husband and I decided there are other ways to be intimate than penetration and we’d just move on with life. We adopted 2 wonderful children. And now, decades later, I still can’t have sex. And exams are only possible with tons of lydocaine and pain and most doctors forgo the process when they realize what is involved. Until now. A new doctor wasn’t gonna leave me in a lurch and referred me to a pelvic physical therapist. I hadn’t heard of such a thing, but I reluctantly went because my doctor insisted ahe was excellent and could find a solution. Long story short, she determined a couple of key causes for my vaginismus. For one thing I have endometriosis. This was known long ago in my 20s and resulted in 2 surgeries. Endo can cause a lot of internal scarring which directly affects the nerves that travel straight to the vagina. Specific massage at the point where the hips meet the legs can help. My nerves thete are apparently very tight due to my endo and that has affect on this issue. But more importantly, she discovered that my hymen is still half way present and like a thick band on one side. An exam showed I had no pain on one side, but tons on the area where the hymen still exists. Sometimes a hymen can stretch eventually, but mine can’t. She recommends I have surgery to have it clipped. Yes, I’ve read here that this may not alleviate the problem, but here’s the deal – she was able to do an exam and insert her finger quite far without lydocaine, something no one has ever been able to do. And the reason is that she didnt just barge in like doctors usually do with speculums or the way tampons or dilators do. She carefully found the one location of the pain and it directly related to the hymen. She also confirmed what I had suspected – that dilators never end. They aren’t a cure and I’d always have to use them if I didn’t do anything about my hymen. And moreso, she told me this is NOT psychological, but physical. Yes, I now have a reaction to penetration due to this history of pain and that is understandable. But that’s not the root cause of my vaginismus. A diagnosis of vaginismus just simply says the muscles contract. But the why is the question. Many women are told it’s due to a trauma or fear. Maybe for some. But much of the time, it’s due to physiological issues. And the medical community does a disservice to women when they convince them this is in their heada. That just leads to shame and embarrassment. My physical therapist was surprised all my doctors had never discussed the option of clipping my hymen before. That could have alleviated a great deal of frustration for me long ago. But there seems to be a reluctance to discuss this option. With women and a preference for prescribing dilators instead. That is a fair approach to try first as surgery should be a later resort. But when a woman has struggled with this condition for years, it is unfair to sentence her to a lifetime of dilators. Other options should be discussed. And no woman should be told it’s all I her head. That just shuts down the possibility of findng real solutions. So I advise women to consult with many professionals, not just gynecologists. But pelvic physical therapists too. I had gone to numerous counselors, gynecologists, massage therapists, done all the exercises, all the treatments anyone was willing to talk about. And none of it has worked. But no one ever actually examined my hymen. No one. So sure, try the dilators. Might work for some women. But research shows it doesn’t work for all and when it does, it requires long term use. If that’s you, seek a pelvic physical therapist and learn of other options that doctors haven’t thought to tell you.

    #22877
    mmmazemelissa
    Moderator

    Thanks for sharing your story.

    We often find cutting the hymenal ring while our patients are under anesthesia during the botox procedure can be so helpful.

    Some women do have very thick and high hymenal rings, and that can for sure be a barrier to painfree penetration.

    Melissa

    #22898
    Sks823
    Participant

    Lillyblue,

    Thank you so much for writing out your story and all the knowledge you’ve gained. I’m SO glad that after all this time you’ve finally found something that may work for you (and someone who cared enough to try and get to the root cause of your vaginismus).

    I’m sure this post will help many others and give others hope.

    Cheers!

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