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February 16, 2019 at 3:27 am #24363
Hi, I’m a new member but I may be the oldest one! I’m 51 and have suffered from vaginismus all my life and I can quite honestly say it has affected all areas of my life; I think you would need to be a sufferer to understand the full extent of the pain both physically and emotionally. I have been with my partner for 30 years (married for 21) and despite the vaginismus we have 2 children, conceived very painfully and, thankfully, quickly. It was a good job I was able to become pregnant very quickly each time (5 in all because I also had 3 miscarriages) because otherwise I would not be a mother. I have probably had sexual intercourse about 10 times in my whole life!
This forum is great. When I was in my 20s there was no internet and very little awareness of this condition – I felt alone and inadequate, as the people I disclosed my problem to often reacted negatively; sadly, this included some of the medical profession. There seems to be a lot of help in America but I can’t find the equivalent treatment in the UK. I’ve had a really low patch generally over the last 6 months and I’m currently waiting for some counselling, but I know I need more than that to beat this condition. I have a set of dilators which I have recently started using on my own and I can comfortably use the first one and am attempting the second. Sorry – I’ve gone on a bit but I could honestly write a book! I just wanted to make a connection with people who understand but I’m also aware that I may frighten some younger sufferers into thinking they will never get over it because of how long I’ve had it. I just want to stress that this needn’t be the case; there is a lot more help and support out there now and I know there is a high rate of recovery.
Thanks for listening.February 16, 2019 at 9:26 am #24365
Hi endofmytether – it’s so great to hear from you! As a former sufferer in their twenties, I honestly can’t imagine what you’ve been through. I dealt with vaginismus for ten years before I eventually got the botox procedure in America where I live and it felt ENDLESS. Several of those years I didn’t yet understand what vaginismus was and felt so alone. It made a HUGE difference that I had the internet to do research and eventually discover what was going on with me so I’m so impressed that you coped for so long with so little support!
It’s amazing that you’re seeking treatment now – I truly believe it’s never too late! Working with the dilators is a huge first step and a pretty crucial part of eventually achieving intercourse.
We have our fair share of people from the UK in these forums so I know that dealing with treatment through the NHS is a real pain. You’ll see them if you spend much time poking through the forums, but here’s a thread from them!
Please let us know how it goes for you!February 16, 2019 at 3:24 pm #24367
recessivegenequeen – thanks so much for your reply. It’s so good to communicate with someone who understands what I’m going through. I managed to ‘bury’ my feelings for a long time when my children were little because I was so occupied with them, but lately the emotions have come flooding back and I’m often bursting into tears. I suppose you can’t bury your feelings forever; they will eventually catch up with you. My libido has also returned but I am confused about a number of aspects of my life (mid-life crisis?) hence my need for counselling. Thanks for including the info on possible botox treatment in the UK – it’s something I’ll definitely bear in mind if I don’t have success just using the dilators. I’m a couple of hours from London but it will be worth the trip if it works!
I’m so pleased you managed to overcome your vaginismus whilst you were still young. I think I’m aware of what we have missed over the years although we have always done other things so our life isn’t sexless and at least we managed to have a family. However, it has definitely affected our relationship and I can’t help feeling cheated. I feel so useless when other women conquered this much quicker than I can. Anyway, thanks again and I’ll take a good look through the forum for ideas.February 17, 2019 at 10:36 pm #24374
endofmytether – that’s all totally fair! It can be very mysterious how our emotions work and when they affect us. I’m so glad your vaginismus hasn’t kept you from having a family or having some amount of intimacy with your partner, but I know how tough it can be on a relationship. It’s possible you won’t need the botox treatment but it’s good that the option exists and that you know to look into it if you want.
I’m so glad you’re taking charge of this! You can never be too old to take charge of the life you want. Good luck and let us know how it goes!March 5, 2019 at 8:18 pm #24569
Does this botox for vaginismus have any negative affect on fertility or able to get pregnant/conceive?March 7, 2019 at 8:53 am #24585
We do not believe that the botox will effect fertility in any way.
However, we do recommend waiting to get pregnant for about four months after the procedure.
This is because there is no data on if the botox injections could in someway affect a developing fetus if you get pregnant right after the procedure. We do not think there is any risk, but because there is no data either way, we air on the side of caution, and recommend waiting to get pregnant until we know the botox should be wearing off.
MelissaMarch 29, 2019 at 9:24 pm #24730
Hi! I am Liz, I am 19 years old and have just been diagnosed with vaginismus, even though I have really known for about 5 years now. It is a relief to finally get the diagnosis that I have been waiting for, instead of being constantly invalidated by medical professionals. Every time the nurses and gyno would tell me that my problems were because of inexperience, nerves, and my mentality, I would shut up, partly knowing they were wrong but partly hoping they were right. I don’t know how long I would have lived in this limbo had I not switched gynos. When she finally diagnosed me with vaginismus it was the biggest relief, but also incredibly upsetting. It has brought up a lot of pain that I had ignored for so long, mostly psychological. I am still really struggling with the diagnosis, and I find myself shutting down every time I think about it, but I think seeking support from a group of women who understand might be a start. I am being honest when I say that I never cry, but thinking about the vaginismus brings me to tears every time. It is the common frustrations of just wanting so desperately to be normal, to not have this stupid problem, coupled with the intense fear that this process is going to be one of the most difficult things I put myself through. I feel already discouraged, knowing that I need to start treatment, because the problem won’t go away on its own, but also knowing that working on it is the last thing I want to do. I have an appointment in a month for my first pelvic therapy assessment (the earliest I could make it), but I am already dreading embarking on this journey. I am grateful that I have been diagnosed so young, and grateful that I bounced my way to a gynocologist who would tell me what I already knew, but mostly I am grateful for the internet, allowing me to learn about this condition from a young age. And thankful that support forums like this exist.March 31, 2019 at 9:22 am #24740
Liz – welcome to the forums! You’ve already been very brave by telling us your story and seeking answers for the problem of vaginismus. I know how scary it can be to look that pile of emotions (anxiety, fear, sadness, shame, guilt, so many more) and wonder how you’ll tackle them, but knowing what you’re up against is such a large part of the battle. I’m so glad you figured this out so young – I was just a couple of years older than you when I figured out on my own I had vaginismus after a very upsetting visit to my college’s health center and a failed pap smear, but my regret is that after I discovered this, I waited another 4 years to start seeking treatment. I felt exactly the way you did – terrified at the thought of tackling things head on, I would rather wait until I was ready than confront the problem in the moment. What I know now is that I never would have felt “ready”; in the end I started treatment because a partner told me I needed to if we were going to have a future together, and I’m grateful for that push because it’s so easy to accept that you’ll always feel that way even when the exit door is open.
I think it’s fantastic that you’re starting pelvic floor therapy soon. The first step of treatment is the hardest because it involves the risk of hoping that things can be better. The wonderful thing is that there are scores of women who can tell you it IS, who are on the other side of that door and know the relief of finally feeling normal. You can pull yourself through this, and you’ll be stronger for it. I know you can do it.April 5, 2019 at 9:01 pm #24773
I’m so glad to be in this forum. I’m 25 and I live in England. I found this site by googling ‘vaginismus forum’, mostly because I just needed to TELL someone I have it. The only person I’ve talked about it with is one male friend, and while he was reasonably nice about it, I really need to share it with people who actually understand! Because it feels like this huge, shameful secret. I feel like a freak and a failure as a woman, and like I’m not a real adult or human. I made the decision to start doing something about it after the conversation with that friend, and I think it’s going to be really helpful reading everyone’s stories and tips. I also just need some hope that it gets better?
TeddyGirl xApril 6, 2019 at 9:33 am #24776
TeddyGirl – welcome! I’m so glad you found us here! It’s amazing what talking to someone about vaginismus can do – I think part of what makes it so insidious is that the shame of the problem locks you inside yourself where you can’t get help.
It’s hard to describe how much better it CAN get once you seek treatment. When I had vaginismus, I truly felt like there was no hope for me. Even after I realized I had vaginismus and knew treatment options existed, it just felt so impossible that I could ever NOT feel the shame and disappointment I’d been shouldering so long. But after I got the botox treatment at Maze and was able to achieve intercourse after dilation, things changed so much. The work was hard and sex took awhile to get used to, but two and a half years after I first got botox, you would never even know I had a problem. New partners never guess I was ever NOT able to have sex and I enjoy it without pain or anxiety. Taking those first steps is the scariest part, but once you begin you’ll be shocked how different things can be.April 13, 2019 at 9:52 pm #24829
Hi, all, I’m 30 and have just been diagnosed with vaginismus…I have a lot of questions but not I’m having a hard time finding answers. It seems I’ve had this condition for about 20 years—I first started experiencing pain when I got my period. I was told it was normal and I should just…deal with it. I used to (and sometimes still do) experience spasms just walking around—no contact or penetration necessary. When I started using tampons (or trying) it was very painful at first, but everyone assured me that would stop. I forced tampons in. My pain grew worse, but again, I thought I should just suck it up. I ended up with an ovarian cyst at 15 and when I started getting cysts regularly, I thought that must have been the reason for my pelvic floor pain. I got married, and sex was excruciating. I told my husband it was normal (because I had been told it was), and with us both being virgins, we had no idea it wasn’t. Three months later (still having painful sex) I was pregnant. I had a very painful and complicated L&D as I was not dilating—I was having vaginal spasms with every contraction. I didn’t know this was not normal. Eventually we both went into distress and I got a very large episiotomy. I continued to have pain. After quite some time, I tried sex again. My husband told me he really didn’t think this was normal anymore, and we began to talk about what helped and what didn’t. My pain didn’t disappear but we found that with LOTS of relaxation techniques before sex, and LOTS of foreplay, and LOTS of lubricant, we were able to have sex without agony. Sometimes I would experience pain and sometimes I wouldn’t. A lot of it depended on my mental health. I had 3 more children, with the same problem each time, but we discovered that with an epidural, I would dilate VERY quickly (usually from a 2-3 to a 10, between 30 min and 2 hours later). After my fourth baby, which was my most painful labor, I had PPD and PPA. My husband and I continued to communicate extensively, and more recently decided there must be something to this continued pain. Even though we were able to have sex and I could usually enjoy it, I would experience spasms at times, and penetration was sometimes still difficult. I went to see my midwife and she diagnosed me and referred me to a PT. I’m currently trying to work through a lot of this because it feels like drinking from a fire hose. I have a history of sexual abuse and now it is starting to look like I won’t see progress until I find a therapist to help with the trauma I’ve experienced. Since beginning PT, my pain has DRAMATICALLY increased. I’m frustrated and nervous and scared and angry. This shouldn’t be happening, I shouldn’t have been lied to, I shouldn’t have been touched, I shouldn’t have been ignored. I’m really hoping that here I will find community and answers. If you’ve made it this far, thanks for reading. I hope you all are having success—the more stories I encounter the less alone I feel.April 15, 2019 at 9:03 am #24830
I am so sorry for all the pain you are feeling JD2009!
I hope you finally get the help and care you need to recover from all these indescribable pains!
It makes me so sad reading all the stories about vaginismus especially yours and all the others on these forum in combination with my own vaginismus experience.
I hope that we are the last generation of woman who has to suffer for so long without being helped!
I am wishing you all the strength to finally get well!
You are not alone and I hope you will get better soon!April 15, 2019 at 9:04 am #24831
JD2009 – welcome to the forum. I’m so sorry to hear your story – you’ve been through an extraordinary amount of pain that no one should ever have to endure. It’s amazing to hear that you’re still going, and you should be proud of yourself for seeking these answers.
It’s possible to see startling results with vaginismus with the right treatment plan. I had it for ten years and after a combination botox/dilation plan, you would never be able to tell I wasn’t always able to have pain-free sex. There is a lot of room for hope amidst this problem. BUT you’re completely right when you identify that some kind of therapy or mental health treatment will be necessary before you can fully escape this thing. Therapeutic treatment is already an essential part of helping untangle feelings of pain and sex, of rewriting those associations – and that’s when there ISN’T also history of sexual abuse and trauma around sex as well. It’s amazing that you’ve started physical therapy, but I would encourage you to look into some kind of talk therapy too. Treating vaginismus can dredge up the years of bad memories and feelings of failure, guilt, shame, and pain, and having help process those can facilitate your improvement.
We’re here to support you if you have questions or just need reassurance – it’s a road nobody walks alone. But you’ve shown so much bravery and strength already, and I know they can carry you through this.
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