8 women share how they diagnosed their vagina problems
Burning, itching, pain — these are all not very fun but unfortunately common symptoms for people with vaginas. But gynecological conditions can be tricky to diagnose, as many have symptoms that overlap with other issues. On top of that, people with vaginas often have a hard time receiving a correct diagnosis because doctors are undereducated on gynecological conditions, or worse, unwilling to believe them. The American College of Obstetricians and Gynecologists estimates that while endometriosis affects 1 in 10 women of reproductive age, it takes an average of 6 to 10 years for an accurate diagnosis after symptoms appear.
While it’s frustrating and ridiculous that it can be such a long and difficult process to receive a correct diagnosis for a gynecological condition, knowing how others navigated it can help people feel less alone. We talked to 8 women about their experience getting a gynecological condition diagnosed — from mysterious symptoms, to misdiagnoses, to eventually finding relief.
Disclaimer: some names have been changed to protect privacy.
Lara Parker, 28
I have been diagnosed with overall pelvic floor dysfunction, vaginismus, vulvodynia, vulvar vestibulitis, endometriosis, and painful bladder syndrome. I diagnosed myself with endometriosis after piecing my symptoms together and using Google. I was diagnosed in 2012 with pelvic floor dysfunction after my first endometriosis surgery and from there the diagnoses kept piling on — mostly from pelvic floor physical therapists who were doing their best to explain my extreme pain to me when other doctors had failed to do so for so long. It took me around seven years to have somewhat of an idea of what was going on in my body — and I saw many medical professionals in that time.
The diagnosis process was both horrific and a relief at the same time. I was happy to have an answer. But I wasn't given a solution. And that was a really, really hard pill to swallow. The medical professionals I saw who were either in a hospital or a clinic of some sort were cold and less than sympathetic. The pelvic floor physical therapists that I saw were amazing and so nurturing. The advice and treatment plans from pelvic floor PTs changed my life. Had I listened to my MD, I would be without a uterus before my 22nd birthday.
I was diagnosed with vulvodynia last April but symptoms started appearing from around the age of 11. I would repeatedly get what I thought were really bad bouts of thrush or UTIs — but after tests there were never any signs of infections and nothing visibly wrong. After years of going to my GP and having referrals to urology and gynecology to no avail, I finally referred myself to a private clinic. I was inspired to do this from Googling my symptoms. I felt like I had to educate my GP every time I went as there was no real understanding or knowledge of this condition. My consultant at the private hospital confirmed it as vulvodynia within 20 minutes.
I felt pretty emotional when I was diagnosed — years of compounded trauma and stress related to this pain was finally being recognised. The consultant had such a strong approach in wanting to tackle this pain and always spoke about it in a way that made it sound like it could be worked on and improved. That in itself gave me so much more hope. There had been previous times in the past where I would see a GP and they would instantly try and diagnose it as an STI, especially when I was a student, and was always made to feel ashamed or embarrassed. I always had the feeling that because this wasn't 'life threatening' (although I have had suicidal thoughts in the past related to both my vulvodynia and periods being so bad), that it wasn't seen as a priority.
I was first diagnosed with endometriosis at 23, through surgery from a gynecologist who specialized in endo, and that process took close to a year. Most of the waiting was trying to get appointments. Fast forward over a decade and the pain returned. I'd moved at least 3 times since, so I tried to start the conversation with my gynecologist close to two years ago.
This second process was nothing short of awful. I tried to explain to my gynecologist about the pain. Having a previous confirmation of endo, I foolishly thought he'd take me seriously. I scheduled an appointment specifically to talk to him about the pain and how it was so bad I was unable to sleep. I happened to be on my period that day, so he said he wanted to do an ultrasound to take a look. So, in the midst of awful cramping and bleeding I got a wand shoved up my vagina and was told he saw nothing so it couldn't be that bad. I broke down crying in the hallway, in a gown, with blood soaking through. He then said that I could try the Orilissa and see if that helps, but just the low dose because he didn't think being too aggressive was necessary. I hesitated because I have never done well with hormone replacement. He assured me that this was the only option. I once again broke down crying in the hallway. I was supposed to try the Orilissa for three months and then see him for a follow-up. I made it through the first month and my period was slightly better but my depression was getting worse. By month two, it did nothing for the pain and I was having suicidal thoughts. I was too terrified to see this doctor again, so I spoke with my husband and my father and they both agreed that stopping the medication and finding a different doctor was best.
From there, my pelvic floor physical therapist gave me the name of a surgeon. It took about 4 months to get an appointment with him but it was like coming out of the dark and into the light. He came in and listened. Then he asked more questions, to make sure he didn't miss anything. He was kind. He took me seriously. He said it sounded like they didn't get it all and that hormones wouldn't do anything, that surgery was the next step. I had told him about my low hormone blood test and that after years of trying, my husband and I had accepted that we wouldn't be able to have a child naturally. So his recommendation was a total hysterectomy, as well as any excisions and even an appendectomy. He explained the reasoning for every piece. He also said that it's a lot to process and that I had up until they wheel me in to change my mind on the hysterectomy. And for the first time I cried from relief.
I struggled with the first doctor because he was so dismissive and so sure of himself. His arrogance shut me down. Like I couldn't possibly know my own body, he was the medical professional and obviously knew more. He made me second guess what I knew about myself. To the point that the first thing I asked after surgery was if they found anything. From the surgery they found endometriosis, adenomyosis, scar tissue that was retroverting my uterus, and a fibroid. It was never in my head. Now the pain is gone. The road to reclaim/restructure internal orgasms is the longest of the healing process but things are coming together.
I have been diagnosed with vulvodynia, vaginismus, and a pelvic floor dysfunction. The process was a very long and painful one. I first started seeing a gynecologist about my problem when I was 16 and was only fully diagnosed when I was 21. In the meantime, I went to five different gynecologists, as well as a urologist, a gastroenterologist, a dermatologist, and a neurologist. By the time I was 19 I was partly diagnosed by an internist and my sixth gynecologist. I only received my full diagnosis last November when I finally went to a physiotherapist who specializes in the pelvic floor.
When you have a chronic illness and no doctor can tell you what is wrong with you, you are forced to become an expert in this field yourself. I did a lot of research over the years and was lucky to have the Internet, because countries like the U.S. or the U.K. are much more advanced in this field than Germany, where I live. The biggest issue, however, is that there seem to be a lot of factors that contribute to health issues like this so it is hard to figure out on your own what factors contribute to your pain.
Until this day I have a terrible trauma from a doctor (with a very good reputation), who told me that he did not believe me and that I just needed to relax and maybe do some yoga. Most specialists I saw looked at me like I was an alien when I explained my issues. They also used the opportunity to make a lot of costly examinations like an abdominal endoscopy, a colonoscopy, etc. I feel like their treatment made my health issues even worse because the way they treated me led to me starting to think I was crazy and therefore to mental health issues, which I did not have before.
I struggled with a lot of things but the most with making sure that they don’t focus on sex too much. Of course, these health issues are a major problem to one’s sex life, but I used to experience pain every single day in every single “normal” situation. A lot of times, when I explained my issues they would focus on sex and tell me to just try to relax and maybe use some lube. I felt like they tried to categorize me as a virgin, who was just a little afraid of her first time and I always had to remind them that my health issues go far beyond my sex life.
Today, I am lucky to be able to say that I found three individual specialists who help me in getting healthy. My internist does acupuncture with me, my gynecologist is very sensitive and supports me a lot in finding my own sexual being, and my physiotherapist helps me the most in helping me to relax my pelvic floor and training with dilators.
Andrea Sweezy, 21
I was diagnosed with endometriosis two years ago by my gynecologist. I definitely should have been diagnosed sooner. The first gyno I talked to about it was very dismissive and wouldn’t even acknowledge the possibility. I had been telling her about my pain for years without her seeming to think anything was wrong. I had horrible cramps that she ended up prescribing me medication for without acknowledging that that’s abnormal. I also used to be in so much pain when I tried to insert a tampon that I couldn’t even use them and all she had to say about that was that some people just weren’t meant to wear tampons. I told her how my period was always so heavy that I could soak through my pad in less than an hour and she just recommended changing them more often. Once I became sexually active I told her how I couldn’t even be fingered without bleeding and experiencing A LOT of pain and once again she didn’t think much of it. I actually avoided having sex for years because I was scared of how painful it would be.
It wasn’t until I reached out and set up an appointment with the sole purpose of discussing the fact that I might have endometriosis with my gyno that she even agreed something might be wrong. But during that appointment she wouldn’t even acknowledge it, she instead jumped to STDs and pelvic inflammatory disease as a potential source of my problem (I had only had sex once at this point and had used a condom and all of my issues had started prior to me having sex). So I was then put through numerous office visits, cervical swabs, and a vaginal ultrasound (both of which hurt a lot and caused me to bleed for days) over the course of about 8 months before she even mentioned endometriosis. It’s kind of funny actually because the woman who did my ultrasound immediately said I should talk to my gynecologist about having endometriosis because my symptoms lined up so perfectly.
I actually had never heard of endometriosis until about a year before my diagnosis when one of my friends had exploratory surgery to see if she had it. Then once I told her about my symptoms she was the one who really advocated for me to look into it and talk to my gynecologist about endo. So the majority of what I knew came from my friend sharing her experience and me Googling it and feeling like the symptoms and stories people were sharing about it really explained what was going on with me.
I felt horrible throughout the process. I didn’t feel like she was listening to me and I didn’t know how to really advocate for myself when she hardly even gave me the chance to. But once she did come around she explained how I could have exploratory surgery to truly diagnose it or we could start treating me with a different birth control. I quickly agreed to the birth control and hoped it would help. It did but it also made me feel incredibly depressed so after two months I reached out and asked her to change it but she told me I had to wait three months and all she could do was increase my dose. So now I was faced with this dilemma of going off my birth control and likely being in a lot of physical pain or staying on it for another month or so and sacrificing my mental health. I quit taking it and called the gynecologist my friend who has endo goes to and set up an appointment for the next time I was home from school. After talking to my new gynecologist for maybe 30 minutes about what was going on she told me it sounded like endometriosis and wanted to switch me to a different birth control. She did in minutes what my original gynecologist failed to do in years.
I have been diagnosed with vaginismus and vulvodynia, and possibly endometriosis, but I have yet to get surgery to diagnose. I basically had to diagnose myself because my gynecological doctors and nurses thought I just had severe anxiety. When I was 15 I tried to use a tampon for the first time and it was absolutely horrible. It hurt to even put it right outside the vaginal opening. When I was 21, I went in for my first pap smear. At this point I was not sexually active, I still am not, and still hadn't used a tampon. But I needed a new birth control prescription. I was on birth control because of horrible cramps that made walking impossible and almost made me pass out (possibly because of endometriosis). So the nurse was understanding and started by just putting her thumb outside my vaginal opening until my muscles relaxed. My pelvic floor muscles didn't relax and after about 40 minutes she sent me home.
When I was 23, I went to another nurse to get a pap smear, again because my birth control prescription had expired. This time I took a Klonopin to help calm me down and it helped. This nurse was able to get the speculum in, but when she went to take a sample of the cervical cells, I felt like I was being stabbed with a knife that was on fire. My mom was holding my hand and I was screaming in pain and telling her to stop, but she said 10 more seconds and I couldn't take it so I bent down and pulled the speculum out myself. The nurse didn't diagnose me with anything. That December I set up my first appointment at a pelvic floor physical therapist to try to figure out how to not experience this type of pain anymore. My physical therapist was the one to properly diagnose me with vaginismus and vulvodynia. And she was the one who told me I should talk to a doctor about endometriosis.
From the first time I tried to use a tampon to the time I got a diagnosis was about 9 years. And from the first time I saw a gynecologist to the time I got a diagnosis was about 3 years. My college roommate also suffered from vaginismus, so she introduced me to the word and then I just started researching all about pelvic pain and really became my own advocate.
When I got the diagnosis, I was like "Finally! Someone believes me! Someone knows that it's not just all in my head!" It was a very emotional experience, especially when I found out I had vulvodynia because that diagnosis came about 9 months after vaginismus. It felt good to have that diagnosis because I was like "Oh, that's why my vulva hurts sometimes." But it was also super emotional because I was like "F**k, another pelvic pain disorder." I am so incredibly grateful for my pelvic floor physical therapist. She is so compassionate and didn't make me feel like I was crazy. She validated everything I thought and felt and she has helped me become confident in my body and asking for the treatment and care I deserve.
I was sexually active without pain til I was 19. Pain came out of nowhere. The first doctor said I must have just had slight irritation from soap. The second doctor thought I had lesions. I moved to the States and was given estrogen cream and lidocaine to put at the entrance. I put on the cream for about 2 months, but it made my skin feel irritated, the pain worse, and my moods erratic. I went back and saw a nurse who suggested I simply masturbate, as the area must just be sensitive and that if I wanted to have penetrative sex that I should take a bath and have a glass of wine (an odd thing to say given I was underage in the US and numbing my mind with alcohol felt a little too much towards blurring the lines around consent). I stopped all the creams after that, but the entrance felt impossibly painful and I couldn’t even use a tampon as it would burn and feel swollen.
My condition worsened when I was given various antibiotics, changed pills, given progesterone cream, and finally an IUD insertion. I kept my IUD in for 1 year and a couple of months. I bled on and off continuously and during the rare times I managed to have penetrative sex I would experience a sharp pain deep in my uterus which would make me want to vomit. All of these treatments, plans, and failed answers led me to question whether I was in fact going insane. Every person I saw seemed to think it was just my anxiety spilling into physical symptoms and that my pain was just something I had to ignore as it wasn’t real. It's only for the last 5 months that I have felt believed and have been seeing various different professionals to help treat and manage the pain.
I do not have a diagnosis, but I have numerous ideas of what it is. I would say it’s a combination of hypertonic pelvic floor muscles, acute/local vulvar vestibulitis/vulvodynia, and vaginismus on the inside wall of my vagina. The vaginismus came after, as I would anticipate pain from pelvic exams or penetration, so my body learnt to tense before pain was even detected. The other part is bladder pain which came throughout the process of diagnosing me.
Now working with a uro-gynecologist and physical therapist, I am doing pelvic floor physio weekly and exercises each week as well as taking antidepressant medication in a low dose that has been shown to help with the nerve-muscle pain response for the pelvic floor and hypersensitivity of my vaginal entrance. CBD lube is amazing, and I use it when doing dilator exercises for physio and occasionally if my body is up for penetrative sexual activity. I am also going to DBT therapy in order to try to put positive mental tools to help relax my anxiety which will hopefully help relax my body. We will see how the next 6-12 months goes with this plan and have been told that it may be a process that is on and off for my whole life, which emotionally and mentally has been hard to process.
I experienced pain and an inability to have penetrative sex from my first sexual encounter in September 2018. I continued to engage in sexual activity but stopped attempting penetrative sex until I met my then-boyfriend in November 2018. I was diagnosed with vaginismus in 2019. It took a series of three appointments with different gynecologists to confirm my condition.
I didn’t know much about vaginismus before being diagnosed. I actually first learned about the condition after seeing an Instagram post from Bellesa about “things that you don’t see in mainstream porn,” and after reading about the condition online, I was able to go to my doctor appointments with some knowledge of what I thought I was experiencing.
I felt pretty stressed during the diagnosis process as I understood more about the treatment and the length of time it would take to treat. The prospect of ongoing physical therapy and the realization that this condition could impact my ability to have kids and a “normal” sex life did scare me — and still does — but the support I received from my friends, my mom, and my partner at the time made it all easier.
I was supposed to undergo an invasive examination under general anesthetic in order for the doctors to “stretch me out” and ease my mind about the physicality of the condition. This prospect did the opposite and really increased my stress levels so I ended up canceling the procedure.
The treatment plan assigned to me has been the use of vaginal dilators, physiotherapy, and sexual relationship therapy. I am still waiting on referral to a physiotherapist. I stopped using the dilators after my boyfriend and I broke up in August, but started again in December. It is slow going to see results with them. I was told it would take at least six months to have real results and with the break I took from using them, I had to start over again. It can feel discouraging to have to wait so long when I wish there could be an immediate fix and I still experience pain when using them sometimes, but I’m hopeful that over time this will help me improve.
I started going to sexual relationship therapy routinely in January. Despite sometimes feeling emotionally drained after my therapy sessions, I’ve found it has been getting easier to talk about these things and have been feeling more positive as a result. It’s also helped me to educate myself about vaginismus, and to follow people on social media etc who talk about these conditions realistically and positively (@laraeparker for example). It makes me feel less alone! Because we’re not alone in this! And I always make sure to remind myself that I have had and can have a fulfilling sex life without penetrative sex.