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Community Voices

Pelvic floor physiotherapy changed my sex life

I can sometimes have penetrative sex without pain now! I couldn’t ever before. It’s thanks to pelvic floor physiotherapy. The internal massage makes it possible. After sessions with the physio, I’ve bought a pelvic floor wand and can do release work myself. 60% improvement since when I was untreated. Find one you trust and who takes it very slowly.

#sexlife #Vulvodynia #painduringsex #vaginismus #pelvicfloor #tightpelvicfloor #pelvicfloorphysio #pelvicfloorphysiotherapy #pelvicfloorwand

Community Voices

Undiagnosed, trying to navigate the healthcare system.

I've been trying to get answers about what the hell is wrong with me for so long I am starting to lose hope. Growing up my parents thought I was just a hypochondriac. Then when I was able to start going to doctors visits on my own and was diagnosed with #PCOS at the age of 15/16 I finally had proof that some if my symptoms were real.

I was finally diagnosed with #mitral vavle prolapse at the age of 26. Turns out that I've had it my entire life but no one cought it until just recently. In addition to the mitral valve prolapse I was also diagnosed with #CongestiveHeartFailure #rectocele #vaginismus #lymphadenopathy #BipolarDisorder #Hypertension #Sleep apnea and #PelvicFloorDysfunction .

I also fit the criteria for a lot of other conditions but I'm having a hard time getting clear answers from my doctors as to wether I do or do not have these other conditions.

Does anyone else find it difficult to actually get a diagnosis from their doctors? Even when you meet all of the criteria for such diagnosis?

My current issue is that I'm trying to get in to see a geneticists to get tested for #EhlersDanlosSyndrome and other connective tissue disorders. In order to do so you have to provide a lot of documentation showing why you should be tested for genetic conditions. Part of this documentation would include the conditions that you've been diagnosed with. But since I have not gotten an official diagnosis for many of the conditions I suffer from I don't have a way to include them in the documentation to send to the geneticist and I have been denied an appointment twice now.

It's like a puzzle. I need my doctors to help identify the missing pieces so that I can go to the geneticist and have them complete the puzzle but I am so tired of having to push and push and push to try and find doctors that are willing to run the tests and not just give up before the missing process are identified.

Why is the process so difficult? On top of it all I have suffered from #Undiagnosed #ChronicFatigue for the past 8 years and I just don't have the energy to continue fighting. But if I don't continue fighting then I'm only going to continue to decline. It's a never ending loop.

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My Experience With Psychological Vaginismus

I never thought I would ever publicly share this part of my story. The majority of my therapy, anxiety, depression, etc. center around this. It’s by far the most vulnerable thing I’ve ever shared. However, it’s a huge part of my story. It’s something that made me feel wrong, embarrassed, broken and stupid. Even unworthy of having a daughter of my own. It wasn’t something I could find others blogging or talking about, so I thought I was alone. For about 10 years. The scarier part was when I would Google my symptoms, there wasn’t much about it. Which made me feel even more alone. So what the heck am I talking about? Well I’m talking about something more women than you’d think deal with, but don’t talk about. Because the idea of it is kind of embarrassing and not an easy topic to bring up. It does make it uncomfortable to share because it’s about the female anatomy. So yeah this post will be talking about vaginas, hoohas or whatever ya wanna call them! However, I’m sharing this with you because I wish I had a blog post like this pop up on my Google search when I felt so alone. That something is vaginismus. I was officially diagnosed with psychological vaginismus a few years ago. I didn’t have a name for it for 10 years, which made it even scarier. So what is vaginismus? It’s involuntary contractions of your pelvic floor (PC) muscles, which are the muscles that surround a women’s vagina. “The PC muscles constrict and tighten the vaginal opening making it uncomfortable or in many cases virtually impossible to have entry,” according to Whether that “entry” be from a tampon, pelvic exam tool or sexual penetration. It’s different for each person. The cause of vaginismus for people also varies. It can either be because of physical reasons or psychological reasons, or both. For physical reasons, certain medical diseases, such as endometriosis or cysts can be the cause for vaginismus. There’s also many more physical reasons, but I just wanted to share a couple. However, for me it is because of psychological reasons. My doctor diagnosed me with psychological vaginismus. Psychological reasons can be things such as traumatic events, anxiety or stress, sexual abuse, childhood experiences or how sex was talked about. Before I was diagnosed, I definitely thought it was because something was physically “wrong” with me. This is a huge reason why I didn’t seek help. I avoided going to the gynecologist until I was 24. Yes, you read that age right. This avoidance is common for people who have vaginismus. This is part of the reason why people who struggle with vaginismus also experience infertility. They avoid seeking help, treatment and answers. I think part of that is because they feel so alone and isolated because it’s not talked about. At least, that was the case for me. I didn’t see a doctor about it until right before my husband and I wanted to start trying to have kids. The only reason why I scheduled an appointment was because I really wanted to see if I could get pregnant. I had believed for so long that I wouldn’t be able to. I’m not going to dive into the specific details of my story because it’s a big step for me to even be sharing this in the first place. I wrote this because I remember how I felt before I was diagnosed. It was terrifying and isolating. I felt like something was terribly wrong with me and no one would be able to understand. However, those feelings changed once I was diagnosed and given a treatment plan. Luckily, the first doctor I saw about it knew exactly what it was and made me feel like I wasn’t alone or a weirdo. I know that’s not the case for all. The reason I got so lucky was because my therapist was the one who recommended her to me. So if you are struggling with this, I would search specifically for a doctor/gynecologist who works with patients with vaginismus. If you live by me, reach out and I’ll give you my doctors information! She is truly an angel sent from above and happened to be the doctor on call to deliver Charlie. Which was definitely a full circle experience! I’m hoping she’s the one on call for my daughter as well. The treatment plan for me was life-changing and was actually one of the most amazing experiences of my life. I think part of the reason behind that was because I had thought that there was no way I could be “fixed.” That’s not the case whatsoever! My doctor gave me a specific program to use which I am happy to recommend to anyone. Feel free to message me about it. I’ve gone through the program twice now! Although, I would suggest seeing your doctor first and ask to make sure it’s a good fit for you too. This treatment was the first time in my life where I felt like a program was specifically made for me. I learned so much about vaginismus in general and also about myself. I learned why I lived with vaginismus and how I could overcome it. The private forum that was provided through the treatment program is a group of women going through the vaginismus program or who have gone through it already. It’s a safe place to ask questions and share stories. It was what I was looking for all those years. The reason why I couldn’t find it was because it was private because not many people are open to talk about this. However, I’m being open right now to let you know about this safe place. I wish my 13 year-old self had this safe place for her loneliness and fears. For 10 years, I believed and told myself that something was wrong with me as a woman. It was my body’s way of telling me I could never get pregnant. I accepted those thoughts for a long time and it was painful because I’ve always wanted to be a mom. I knew that there were other ways to be able to be a mom such as adoption or surrogacy, which made those thoughts a little easier to push away. I didn’t know this was something many women struggle with and could be treated for. It wasn’t until last year where I really took a step even deeper into the negative thoughts that my vaginismus engrained in me. I had gone through the program in 2018, but didn’t fully talk about it openly with my therapist until 2020. The main realization was that I was terrified to ever have a daughter of my own. I felt like I didn’t deserve to have a daughter. Because the one thing that I felt made me a woman, felt broken. I felt like I could never teach her how to be a woman because at times I felt like I didn’t know how to be one myself. Thanks to therapy, I was able to overcome these feelings and thoughts. A few months after this, I became pregnant with my daughter. I am sharing this for the people who may be struggling to get pregnant, use a tampon, have a successful gynecologist visit, have sex, or who may have a similar story to mine. Infertility is also quite common for those who have vaginismus. However, it’s not commonly brought up. I told myself I would share my story if I ever had my own daughter and if I was ready to share. I want her to grow up in a world where she can be honest and know that no matter what, she will never be a woman who is broken. I want her to be able to ask those uncomfortable questions I was too scared to ask. I want her to know that she is deserving. She is understood. She is loved. She is seen.

Community Voices

conflicting views around #Fertility and #Pregnancy

Hi, I would like to preface this post with the acknowledgment that fertility and pregnancy can be a very sensitive topic - I am just very confused in some of my views and was wondering if it was something any other possible child-breaking person has experienced.

I am only 21 years old (f) and have been with my partner (m) for 2 years now with the goal of going long term and hopefully one day marrying. From the outset of the relationship, both of us have been in agreement that children isn't something we really want. we don't have good reactions to being around children and often find them too much to cope with (we both have our respective mental health issues) and we would prefer to have animals one day after traveling and spending our life together.

Recently, however, I have been diagnosed with secondary #vaginismus and my partner has been having sever testicular pain which we think may be epididymitis which may need to be treated with surgery that will reduce his #Fertility . Now, despite always saying that I don't want children and still believing in that path for myself, being faced with these two issues almost makes it feel like our option to possibly change our mind might be taken away - even though we are both pretty dead set on remaining childless.

Is this #Conflict ever affected anyone else? it just seems very confusing that this possible loss of fertility is affecting me negatively when really it should be something that is aiding in my decision to not fall pregnant.

3 people are talking about this
Community Voices

Tired of sexism in medicine

TW: sexual assault mention
Dealing with #Sexism in medicine has been so exhausting and frustrating, especially as someone with multiple chronic and mental illnesses. It devastates me that it’s become so hard to find a doctor who listens and is actually trying to help me and doesn’t try to convince me my severe pain/other physical symptoms are due to “stress” or a need for counseling when I’ve recieved therapy/psychiatric meds for years.
Almost a year ago I had a gynecologist, after an extremely painful pelvic exam (#vaginismus likely), who told me to work on controlling my facial expressions because “you’re acting like I’m raping you”. A few months later I was vomiting constantly and got an endoscopy to find out I had esophogitis/gastritis, and after my amazing mom asked if my psychiatric meds (#cymbalta and #lithium ) could be contributors he said “yeah we see that a lot”, when I already asked my psychiatrist to see if these meds could be cause for my #bladderpain and was told these meds could be helping me and to stay on them. To try and work on these problems (and other symptoms) I’ve seen several specialists, most of whom have said my symptoms were all due to stress and there was nothing they can do (and actually suggested increasing cymbalta), or they said “all medications have side effects”. My female practicioners have been just as disappointing, with many telling me I just “needed to wear more tampons” or have sex to help my vaginismus and pelvic pain.

I’m not anti-medical establishment, I’m willing to try new treatments/do what doctors say, and I do everything I can to be as assertive as possible, but it doesn’t seem to be enough. Luckily I’m working with my wonderful GP to withdraw from cymbalta, someone who actually listens to me and recognizes I should have a say over my own healthcare. But I’m still so tired of feeling alone and frustrated by this pervasive sexism and dismissal by so many medical professionals. What hurts more is this sexism has existed for many, many years, and it doesn’t feel like I can do much beyond “be more assertive”. It’s also hard to find much support and mainstream coversge for these experiences.
I understand much more needs to be done to educate medical professionals about unlearning sexist practices, and there is an apalling lack of research on women’s health/gender differences in treatments, but I really think doctors can do WAY better than they have been. I care about my health, I’m a willing and informed patient, but women deserve so much more than what we’ve had to deal with since the beginning of medicine.

1 person is talking about this
Community Voices

How did you overcome vaginismus?

I have vaginismus so severe I've never been able to successfully have penetrative sex. Despite my successfull journey (still continuing!) through depression, anxiety and bpd, I'm struggling to progress with my vaginismus. I am seeing a sexologist every 6 - 8 weeks.
#vaginismus #Depression #bpdsymptoms

4 people are talking about this
Community Voices

Has anyone struggled with pain during sex because of sexual trauma and/or early messages about sex?

I am highly avoidant of intimacy because of the pain I experience during sex. I was raised Catholic, and my mom did a lot of slut shaming. While I was getting these messages about the sinful nature of sex, I was also being sexually abused. As an adult, sex is incredibly painful, and it has been a barrier to having a fulfilling relationship. #SexualTrauma #Trauma #SexualAssault #vaginismus #SexualAbuse #WomensHealth

Community Voices

I have had localized vulvular pain around my vaginal opening for as long as I can remember. I am starting physical therapy for it soon, but of course I have anxiety about it. I can insert a tampon and my finger with pain, but I can’t imagine anything more than that. Anyone have experience with pelvic floor pt?

5 people are talking about this
Community Voices

I am sick. I have chronic illnesses. I am in pain everyday. You probably can't tell. I smile and laugh and live my life. But sometimes it's too much. Depression and anxiety tie me to my bed. My insides are ripping themselves apart. My mind is fuzzy, my vision blurry. Standing up causes the world to spin rapidly on it's axis. I am exhausted. Not in the I didn't sleep well last night sort of tired, but the bone deep weariness, feel it in my soul, I wish I wasn't alive sort of tired. I can't go to class. I can't go to work. I probably haven't eaten. I spend a day in bed, and then I pull my broken pieces together and get back to work the next day. It still hurts, but the day of rest is usually enough to get me back and moving again. But I'm accused of being dramatic, I'm told to "just push through". I see people roll their eyes when they think I'm not looking, whispered conversations about how I don't deserve to be accommodated, I'm taking advantage, I'm a bad friend. My classmates, my friends, they don't understand. They don't see how hard I'm trying. They don't see me cry myself to sleep, spider-work lace tear stains made of mascara on my face. They don’t see the ice packs pressed against my skin or the bottles of pills on my nightstand. They can't see me. They can't see that I'm doing my best. That's all I've got. My best. I'm just trying to survive. Pain makes it so much harder not to listen to the demons that hold me tight in bastardized lovers embraces: “you’re weak, a failure, no one loves you. Why would they? You’re not thin enough or pretty enough. No one wants the misfit toy. I’m all you’ve got.” My demons might be cruel, but they’re there when I’m alone, holding me tight when no one else does. They’re demons through and through, but they’re mine. #Endometriosis #vaginismus #Anxiety #Depression #EatingDisorders #ArtTherapy

2 people are talking about this
Community Voices

Diagnosed with #vaginismus yesterday

Anyone else experienced this? Just got my diagnosis yesterday and my doc says it should resolve on its own as I age. Definitely stressed out to get the news!

#ChronicIllness #MentalHealth #Anxiety

3 people are talking about this