Where should I even start?

[Arivera399]

Hello, I’m a frequent visitor of this site. I’ve experienced a concerning sign of a sexual dysfunction over the years and I’m turning 22.

My last two visits to the gyno have been frustrating and traumatizing and I’ve decided to register so that I can communicate some things that I need help with.

I first realized when I was 14 years old that I could not insert a tampon for anything. It would stick out and I couldn’t push it in at all. Not to mention the pain was horrible and my instincts forced me to stop pushing. When I turned 18, I visited my gyno doctor for the first time to get an examination in order to receive birth control. The examination was so painful and agonizing that I was screaming like I was being attacked. I do want to clarify that I have never had a history of sexual trauma. I do have trauma affiliated with sexual harassment/stalking but that was not a direct cause since I couldn’t put in a tampon at 14. Anyhow, after that experience the doctor diagnosed me with Vaginismus and said I should practice with dilators and didn’t really say much after that. It was such a brief response that I could hardly listen to what she said due to the over stimulation and pain fogging up my brain.

Fast forward to now, I have a really amazing and supportive boyfriend who is aware of these issues. The very first time we attempted to have sex, it felt like a burning numbing sensation and it felt like I was being ripped in half. We tried many times again with me leading the way, tried many poses, tried long hours but nothing worked or even got an inch inside. Finally we just stuck to non-penetrative sex. He and I have a very deep communication about what we want from each other so I know communication is not an issue and I don’t have anxiety when it comes to intimacy.

I decided to go back to the gyno this year to get a different kind of birth control. The lady told me I must get a pap smear before I can get birth control, she told me it was illegal to prescribe birth control without a pap smear once I turned 21. This time I screamed before she even inserted anything with only the tip of the brush touching my opening slightly. It burned and hurt so badly that she insisted I had been raped before (Which I was not. This had upset me more). I warned her many times before the examination that I have vaginismus and I can’t but she really got impatient with me and I cried so I felt like I had to go through with it. I don’t think she knew what vaginismus was and after that she kept saying it was in my head. This was the last straw for me and I can’t even muster up courage to go to a regular gyno anymore. I’ve tried dilators and I can’t do it by myself, it’s terrifying. The area where I live in doesn’t have anything like Maze Womens health or anything related the vaginismus or vulvodynia and I don’t think a lot of them in my area know how to treat it. I do think I have a combination of both, with vulvodynia being the main problem stopping me from practice dilating at all. My opening by itself is extremely painful just pressing my finger on it.

I am planning to schedule an appointment and taking a trip to NY just to get help or advice. But before that, what should I do in the mean time? Do I have vulvodynia? Is there anything that I can do to temporarily stop the pain. I’ve made no progress since I turned 18. It hurts me so much to write this because I feel like no one is on my side or believes me. Including my mom who has experienced vaginismus symptoms too but she seems to be in denial about the whole thing. The only one who believes me is my sister and boyfriend.
Thank you for taking the time to read this and I understand if this is a lot. If I’m in the wrong topic please let me know.

[Cathleen Kneidl, RPA-C]

I’m so sorry you have such terrible experiences with your gynos. It really shouldn’t be like that, but unfortunately some gynos really just don’t understand vaginismus. Perhaps someone on this forum could help you find and understanding practitioner local to you. I hope you do get a chance to get to MAZE, we are very experienced at treating such conditions.
Getting to your question about vulvodynia vs vaginismus, it’s not a diagnosis I can make here in the forum. But what I can say is that burning is common with vaginismus- those muscles have been in spasm for so long that any stretch to them can feel like intense burning. Vulvodynia also comes with a lot of burning, but a lot of patients will report burning without even doing anything, just sitting in a chair, etc. And it’s definitely possible to have both. So it would be important to get an exam (by an experienced provider) to figure out what is going on.
Another thought is to try pelvic floor physical therapy, they can help you to relax those muscles.
Hope all of that helps and please keep us posted on your progress.

[recessivegenequeen]

Arivera399 – I’m SO sorry about everything you’ve been through. It continues to boggle my mind that there are so many gynecologists–DOCTORS who are supposed to specialize in female health–who have no idea about vaginismus and vulvodynia. Even if they didn’t, their lack of sympathy or patience is galling. One of the crappy things you see over and over in stories from women with vaginismus is how they all seem to deal with an insensitive medical professional at some point along their journey.

Cathleen makes great points about next steps (and if you tell us what state or metropolitan area you live in, maybe we can suggest someone to see). I’ll also add that I went to the Maze Clinic when I lived in NYC for a brief period, but even if I hadn’t lived there at the time I still would have taken the trip. I got botox at Maze and it’s one of the best decisions I’ve ever made. Everyone’s needs are different, but I can say they are so great and so helpful when you feel like no one will ever understand.

[Arivera399]

Cathleen and recessivegenequeen

Wow, thank you both so much for your responses. I am glad you both can see that the doctors treatment was so insensitive. I felt like I was overreacting and being childish. It really discouraged me. But deep down I knew it was unfair. Thank you both.

I am also filled with happiness and relief to know theres hope with the botox procedure. Even if I dont end up needing it, Im very happy it worked for you, recessivegenequeen.Congratulations!

As for suggesting gynos in my area, I live in Florida near Tampa. I would appreciate suggestions in the mean time! Aside from my area, I am very interested in seeking out NY in the future nonetheless. I felt like Ive lost trust in regular gynos since my last appointment. It just feels like a game of russian roullette. Suggestions would be great if its not too much trouble. Thank you so so much again. Thank you for the understanding. I feel hope.

[anonymous123]

I feel like I have/ had a very similar situation to you. I am 19 years old and going to be 20 soon. When I was 15 and wanted to go swimming at a pool party, I decided to attempt to use a tampon. To my surprise, I could not even put the slightest amount of pressure on the OUTSIDE without stinging and burning. Fast forward a few years- I have the best boyfriend in the world who was also extremely sympathetic to my condition. When I was 16-17 and with him, a few months into our relationship we both felt ready to have sex. However, my vagina was not very cooperative. I figured I was tight and shook it off as nerves because I was in denial that anything could be up with my vagina. I felt it was necessary to see a gyno to have a second look… and it was the most terrible experience of my life. Similar to you, my gyno was unsympathetic towards my pain and discomfort. She literally started laughing thinking that I was “all in my head” and “being paranoid.” I switched gynos THREE TIMES. I began to feel hopeless. After about two years in my relationship, we gave up on penetrative sex and stuck to oral, it killed me though. I knew we both wanted to advance our relationship and engage in penetrative sex. I highly suggest MAZE Women’s Health because they are amazing, clearly, but I did not go to them and still was cured.

I found a physical therapist who specializes in pelvic floor therapy, which is correlated to vaginismus. The crazy thing is that this condition is so consuming that I started to feel sorry for myself and disgusted with myself. The moment I turned that mindset around and seeked physical therapy and began talking about my issues on this forum, I made a total 180. Through stretching, breathing exercises and slow progress with dilators, I am now cured.

I suggest the following: if you can make the trip to MAZE that would be great. They will evaluate you mentally and physically and give you hope and compassion which is really all I needed in terms of starting the process of treatment. If you cannot get to MAZE, I would research a local physical therapist who can specialize in pelvic floor therapy. Practice the exercises and breathing techniques and then slowly progress from there. It is not an easy journey, and I know you have had a tough time up until now and I am so sorry for that, but there is hope. Take it from me who literally would get faint and lightheaded during exams. You got this, and we are here for you!!! Please reach out!! I believe you and so does everybody here:)

[Arivera399]

@anonymous123
Wow, our stories are so similar!! Your gyno reacted pretty much the same as mine and it’s so hurtful and shameful to hear that, when we both know we literally can’t control the pain! I hate that people were supposed to trust in these fields make us feel worse. Not every gyno is like this of course but it really does get tiring. On the other hand, holy jeez, I’m so happy you’ve been cured!! Congratulations, it must feel so liberating with your hard work. Thank you so much for your insight. It feels a lot less lonely.

I don’t know if I’m just scared but I honestly worry that pelvic floor exercises won’t be enough. The thought that hurts me the most is going on nearly 6 years with very slow progress, which I’ve heard happen. To be honest, I’m just anxious and impatient. I know I have to calm down for this type of thing. I’ve practice dilating on my own but I get too scared and frustrated. I wonder if seeing a specialist will be different. Me and my boyfriend are heavily considering taking a trip to NY as that seems to be our best bet. We also want to tour NY meanwhile, haha. But man, I’m really excited to be able to work on this with educated individuals who are sympathetic towards vagina related conditions. Talking about this is really getting a lot of weight off my chest. So thank you to those who have replied and answered me. It really really means a lot!

[Jennifer Dembo, LMSW]

Hi Arivera399,

Thanks so much for writing, and I am truly sorry for your experience with the medical providers you encountered. Sadly, we hear this all too often at Maze. Of course we don’t want to vilify all OBs; many are wonderful, attentive and caring. But very few have specialized training in this area, surprisingly. Regardless, no one should treat a patient with anything other than kindness, and clearly this was not the case with your doctors.

If you are planning a trip to NY, we hope you’ll schedule a visit with us; we’re committed to providing all of our patients compassionate and comprehensive care. We offer a combined medical/behavioral approach, and frequently offer a variety of treatment options from which to choose. Give us a call to learn more so that you can decide how best to proceed.

Wishing you all my best – leave no stone unturned when it comes to your health and well-being!

[recessivegenequeen]

Arivera399, I’m glad you’ve gotten to hear from from anonymous123 since she had such a different experience than I did in treating her vaginismus. I think it highlights the extent to which people’s experiences can differ with the same issue; some people can dilate and cure their vaginismus on their own while others need assistance from a specialist like a pelvic floor therapist or from botox. There’s no right or wrong way to do it, just what your body and mind need at the end of the day. I love Maze and couldn’t recommend them more highly, so if that’s what you need my best recommendation is to be patient with whatever your process for treatment ends up being. Let us know how it goes and good luck with all of it!