(she/her, 32, White, from Serbia, in Austria)

Purple uterus with white ovaries, pink vagina, and gray endometriosis lesions and black chocolate cyst. Collage is on a gold metallic background with silver and copper stripes

Endometriosis

cervical cancer

heavy bleeding

menstrual pain

abdominal pain

bloating

diarrhea

fatigue

back pain

ovulation pain

My name is Alekszandra. I'm 32 years old, I'm white. I use the she, her pronouns. I like to joke that I'm as cisgender as they get. I'm a very big stereotype of femininity. I'm from Serbia, but I currently live in Austria where I study and work. I have been living here for quite a while. I've moved a lot, I lived in Canada, I lived in Vietnam.

My first period was a disaster. I don't remember so much being in pain, but I remember that it lasted for two weeks. I had to change a pad after every class in school. I remember being devastated because I thought this was normal, that this is what it's going to look like:  half of a month is going to be just bleeding incessantly. 

At one point, my mom did want to take me to a gynecologist to ask if this was normal because she also started freaking out a little bit. I remember that she spoke to her friends, and to moms of my friends, and that everyone calmed her down saying that the first period is always a bit strange and irregular, that it takes a while before it becomes regular. She told all of this to me as well and then it finally stopped, and it happened exactly that way. A couple of months passed and then I got what would become my normal cycle. Since then it has always been irregular and always very long, between 30 and 40 days.

It was quite heavy and painful. My mom is  the kind of a person that she's against medication unless you really, really need it.  I had to really convince her to let me take painkillers. I remember one time that I got so sick that I was having diarrhea and vomiting into the bathtub that was next to the toilet at the same time. When she witnessed that she was like, “I'm sorry. Take all the meds that you want.” 

The first gynecologist that she took me to was a horrible experience that I will never forget. I was still a virgin. She did a rectal exam and it was like, “Drink more water. Don't exaggerate. There's nothing wrong with you.” My mom was in the room. I would be 15 at the time, I think. I was all into punk and was gothic, so I was in all these outfits. People thought I was a bad kid, even though I was always the biggest nerd ever. While I was sitting there,  the gynecologist completely ignored my existence and told my mom to be careful and to watch  out forme because I'm probably making it up so I don't have to go to school. Thankfully, my mom ignored her. Then the second time that we went to the doctor, the next gynecologist told my mom that I should just get pregnant as soon as possible because pregnancy solves these things. I was 16, and my mom literally just grabbed me by the  hand and dragged me out. My mom told me, “You should not get pregnant as a teenager. You can have a boyfriend, but don't get pregnant.” She was more freaked out than I was, and was just like, “All these people are idiots.” 

By the time I was around 17, I started to believe that it was psychosomatic - that I was causing it - because if you have so many people that are supposed to be authority figures, who tell you this, and there's no other solution offered, you start believing it. I think at one point, we all just accepted that that's how it is.They tell you it's just what it's like for some women. 

I reached the point of , “I can't talk about it anymore. It's how it is. I have to accept that.” If you have people of authority who consistently give you a certain narrative, no matter how illogical it seemed to you in the beginning, eventually, you go with it. Although, everyone intuitively felt that there was something off, we just all went along with it.

I wish that I had  known about endometriosis, so that I could have pushed for a diagnosis earlier. Even if I had just changed my diet or exercise or something, it would've helped because later in life, it really did make a difference. It obviously didn't cure it, but it influenced my symptoms.

I feel like I've lost so much time on not knowing and so not being able to act accordingly, because it is a literal loss of time. At one point , I tried to do  a little average calculation to see  how many days  I spent bedridden. Then if I take into account also the days that I'm not feeling great, so I have to  skip doing things, it's like I lose half a year almost every year. That's missed exams, missed parties, missed events. It's not always super important things. But sometimes they really are.

There were missed job interviews. There were missed big things, but even the little things - I actually don't think that we should underestimate  them. Yes, when I was a teenager, it was the most important thing in the world to go to this party because maybe some boy was there and I had bought that new dress or whatever. It sounds stupid, but to me, that was very important and I was heartbroken that I missed it. 

There was also the bloating. I remember that before I was supposed to get my period I would always get very, very bloated and literally look like I'm pregnant. Everyone would be saying, "Don't exaggerate," because I'm skinny naturally. Even now, people are like, "Oh, you don't look fat." "I'm not saying I look fat. I'm saying that I'm freaking bloated and it really hurts and I can't fit into my clothes." When I was a teenager, my mom also thought I was overreacting  a little bit. I remember these moments between the two of us, moments of her realizing how much things were wrong. I think it was by the end of high school and I was in my goth phase, so of course, corsets were  all the rage. If I was going to a very important party, wearing a corset was a must. If I was close to my period, there was no freaking way I was going to fit into any of my outfits . I remember there was a party that was very important to me, and I said to myself that  I'm going to wear a corset  even if it’s the last thing I do.  I asked my mom to help me get dressed but she couldn't zip it up.  She had helped me with the same corset a million times, and now she looked  at me and she was like, "Oh my God, you're actually right. Where the hell did that stomach come from?" "I've been telling you, I'm like two sizes bigger."  She just couldn’t zip it up, I was that much bigger. I couldn't wear it that night. I had to improvise another outfit.

It wasn't the end of the world, but this memory really sticks out for me. I remember this moment where she actually really looked at my body and realized that my stomach was like  10 times bigger. She couldn’t understand what was going on.  This lower belly would get so big that I really looked like I was pregnant. I remember from my younger days, this is what sticks out: it’s these kinds of stories where either something went wrong because of my period and people really had a reaction to it,  or these moments of other peaople’s realizations that, "Okay, there's something weird going on." I stopped mentioning it at some point, even to doctors because they were  just like, "Okay, so this is how it is, and it's not that important." 

I was taking anti-inflammatories and drinking because that would make me feel less pain. Obviously, it was just because I was drunk. Now I know that's the worst combination. You can't take anti-inflammatories and alcohol, it's dangerous but  also completely, even chemically, it makes no sense: you're taking an anti-inflammatory and then chugging a literal inflammatory substance. But I didn't know any of that then. 

When I had my cervical cancer screenings and when we got into that, I remember, which now sounds very dumb, but I didn’t  mention painful periods. When I would mention it earlier in life, I would just be put on some sort of a hormonal treatment for period pain, but nothing ever really worked. I guess I was overwhelmed by this new thing. It was scary. It was much more serious, there was supposed to be surgery. I just didn't mention the period pain  because it didn't seem mention-worthy.

  I had cervical cancer when I was 21. That all went really well. I have to say, I had just one surgery and have been totally fine after that. That's the least of my trauma. People expect that to be the biggest story, but it was caught very early, completely by accident. I had no symptoms. I just went to do my pap smear yearly as I  always did. One came back a bit off and then I did another one and another one and another one. Then it turned out that it was cancerous and I had surgery. 

A year after the cancer, I had a thyroid tumor, and again, surgery. I still didn't know that I had endometriosis 100%, but that's when I started asking like, “Isn't this a bit strange? Isn't this connected somehow? They're both connected to the female reproductive organs. The thyroid controls hormones. The cervix is obviously part of it.” and all the doctors  kept saying “No”. I found this to be very strange and I said this to various doctors, too.

I think that's the biggest problem: everyone's just looking at their own specialty. They're like, “No, I'm just looking at your thyroid. I don't care what else is wrong with you.” That was the last surgery  before my endometriosis surgery.

When I dug into endometriosis, I read a book called Endo for Dummies. It lists these non-menstrual symptoms that a person can have since childhood, and I literally am the perfect example of endometriosis. I tick every box. Realizing that made me angry a little bit. How come nobody saw this? 

I had really strong  support from my mother. She always taught me, “Whichever doctor you're seeing, tell them everything. It doesn't matter if it seems disconnected, maybe they will find a connection.” Nobody ever did. It was a really huge point of frustration.

I got an official diagnosis when I was 28, in 2018, but I knew and suspected long before.

 I met the woman who is now my regular doctor and my surgeon for everything when I got diagnosed with cervical cancer., I love her. I was doing the LEEP, so the loop excision, and I was doing it just with local anesthesia, which I do not recommend to anyone. I would not do it again with the local anesthesia, I definitely would need to be asleep. I remember that I came in and obviously, I was nervous. She told me, “Just relax. It'll feel like a period.” Now I was like, “What?! That's horrible! What do you mean, I would feel  pain like  period pain?.” I remember she saw the horror in my face and I saw her confusion, and it was like her eyes were saying, “Why didn't you say anything?” It was like this whole mute exchange of “Oh, shit”.

The LEEP procedure really hurt. It was only 10 to 15 minutes long but excruciating. Even then, it was again, like, the ethics, the  behavior which I find to be the most problematic in the general story of female health or health in general. She, the surgeon, was very nice and soothing  and would slow down and try to calm me down. But she was hyper-focused - she's cutting out three square centimeters of my flesh, she needs to be working. There were nurses which were supposed to be the people that are  minding you, and there was a nurse that literally started yelling at me: “Women go through labor for 10 hours. You've been doing this for five minutes, suck it up.” I couldn't speak because I was focused on breathing and surviving. I really wanted to snap back like, “I really don't see how you're helping at all.”

I remember having this gut instinct. I could see  the surgeon between my legs and her head was so close to my knee. On the one hand, I’m thinking that I know why this is happening, this is good is for me, I have to stay calm and not move so she can get the job done. The other part is the more primal part : someone is hurting me, she's hurting me; I had such a need to punch her in the head with my knee just to make her stop. At one point, I finally said “You have to hurry up, or I will kick you.”

Later the doctor asked me, “Why didn't you mention how painful your periods are?” I told her, “I kept mentioning it for about 10 years, and no one said or did anything, so I just stopped.”

As you grow older, you start taking less shit from people. The turning point for me was when I started working and providing for myself. Then this became another kind of problem. “What do I do about missing work?” I started working when I was a student. I was doing my master's degree, and I was waitressing. That was a good thing because it was quite flexible in the sense that I could change shifts with people.

I kept it a secret, I didn't want to tell anyone because, I thought that if I tell my employer that I'm going to be out of commission every month when I get my period, no one's going to hire a person like that. I started getting nervous and thinking about the future, like what happens when I finish university and get a nine-to-six job, how am I going to get out of it, then? Is this what it's going to be like always?

The culture here in Austria, there's a big pub culture, and it is very relaxed. It's understood that the staff is also drinking. It was very normal. Also, we were all students. Work was like a party. I would always try to calculate which day was going to be the worst one, the day when I really can't move, and all the other days  I'm like, “Okay, I've got to push through.” Then I would take a ton of medication and drink a lot, so that would kind of numb it. Given the medication I was taking at the time, and its potential consequences, I can't believe I'm still in one piece.

The endo again was a huge stressor.  Waitressing isa very physical job, you can't sit down, you can't lie down, I was always stressed. The secrecy of it was also stressing me out because I was spending so much time in the toilet changing tampons or pads. I would disappear for 10 minutes and then everyone would wonder where I was. 

That's when I got a bit more aggressive about wanting a diagnosis. “This is not normal. I can't function like this. I want an answer.” That's when I decided, “Whatever the gynecologist says that we should try, I'm going to try it.” I was on every pill that there is, the Depo injections, everything. If they told me to try standing on my  head for five minutes a day, I  would have done it.

Nothing worked, nothing at all fixed it or made it even better. Every hormonal therapy made it worse. The only positive thing was that my cycle was more predictable, but that wasn't much of a help. We concluded, in the end, that I was intolerant to progesterone because it made me very slow, very depressed, and gave me migraines. It's difficult to describe, but I would really feel like I would get a little stupid. Even then, the doctor was very stubborn, having me try different pills. I just felt very off, like I'm in constant PMS, and quite distraught. Then we did my blood work. I remember that he was like, “Oh, your blood work looks like you're pregnant, but you're not pregnant, your hormones are at that high of a level. You must be feeling very crazy right now.” 

Then finally, he mentioned endometriosis and explained what it was and I was like, “How come nobody ever mentioned  that before?” I had heard of it online, but I disregarded it, even though I fit quite well into it. I was like, “No way. I'm at the doctors' all the time, no way they wouldn't notice.” Also, I think, because it sounded quite scary,  I really didn't want to have it.  

Getting a diagnosis was a  relief. I was like, “If it has a name, there's a cure.” It didn't really go that way, but I was very relieved and very glad that I got information  that made sense.

I was offeredsurgery, but I didn't feel ready for that just yet. It was too much information all at once. Then I started researching endometriosis  a lot and I discovered all of the online support groups and blogs and just realized  what a huge community this  is.  I just became a very cliché patient - what I know now that is a cliché endometriosis patient - a person with a DIY approach. I researched all of the food, the exercise, I experimented a lot with what works for me, and managed to create a diet for myself where I no longer vomit or have diarrhea or get a fever when I get my period, but I'm still out of commission for two to three days. It really does feel like going into labor. I really do feel like I'm giving birth to these blood clots that come out.

I had surgery last year and it didn't do much, but I'm glad  I had it  because it gave me a  clear picture of exactly what was going on.  At that point, I already had a visible cyst on my left ovary, which was the one that was making all the trouble. There was finally something that you could see on the scans and my surgeon finally said , “Okay, we're going to do the surgery.” She assumed that it's a chocolate cyst, and it was. 

But t hen  another issue came up, because I have never wanted to have children: it was just never my plan. I don’t have a reason. One thing that really annoys me is that people are always like, “Well, when this or that happens, or when you find the right person, you’ll change your mind.” I’m pretty sure I’ve found the right person, I'm in a very happy relationship, but I still don't want to have kids. I told my surgeon, “If the ovary is so screwed up, I want you to take it out,  just don't leave me with faulty organs that you already see are going to cause trouble in the future. I'll go see a shrink, I'll do whatever process you want  me to go through to get proof that I'm a sane person deciding this.” I went through that entire process. Then we had to do a count of my eggs and assess how fertile I was. Then she had paper proof that I could still conceive with just one ovary, and then she said, “Okay, now I'm legally allowed to do it.”

 During the surgery, therewas a surprise. With the left ovary, it was exactly like we assumed it would  be, but it turned out that the right ovary which had caused no problems and showed no abnormalities on any screening, it was the bigger problem. It was completely intertwined and stuck to the uterus. The way it was explained to me is that it was like there were  cobwebs that were sticking it to  the back of the uterus. I don't have an appendix, so the place where the appendix would have been was full with endometriosis, and I have it on my intestines, on my bladder and on the pelvis. It was everywhere. 

She did only partial surgery. She didn't touch the intestine and she didn't remove it from certain parts of the pelvis, which I have nothing against because she very openly told me, “I'm a gynecologist. I did what I was comfortable with doing.”

She said that they had a lot of patients that would be very angry later that they weren't magically cured. I told her, “I know that you're not going to fix me, but I still want do it. Let's remove what we can and see.” I wanted  know where the endometriosis  was.

The biggest benefit of it was that I have videos and photos and now I'm aware that I'm going to have to have another surgery . The next time that I go to an endometriosis center, I'm going to be able to bring info. Things will have developed  in between but at least they won't be going in completely blind. That, to me, was the biggest value of the surgery. The pain isn’t significantly lower. I wouldn't say that it fixed too much, but I am very glad that I did it, even though I'm still going through the same hellish cycle every month. 

I turned my endometriosis  into my PhD, I turned it into writing, into artwork, into TikTok, into Instagram. That's, I guess, my coping mechanism. I just had this moment of, “I refuse to let it be for nothing”.

My PhD is in medical humanities- it’s about what it means to be a patient of endometriosis from a social and cultural standpoint, the point of view of the patient. I'm working with the patient perspective. Everything that I learn, I try to turn it into  blogs in “normal people language”, that’s what I call it -  to diffuse this super fancy academic writing into something understandable. It keeps me going.I have to follow my cycle, I have to be aware of it. There's this thing that I call “the danger week”. I know that at some point within this week, this is when there's going to be flare-ups, and one of these days is going to be the first day of my period. I can't have any plans for this week , because who knows when I'm going to collapse or something. I really look at the calendar, I look at my menstrual app more than a regular calendar, and that's how I plan things. It was a bit depressing in the beginning, when I was like, “Okay, I'm a complete slave to my cycle.” Then I said, “This is my life, this is going to be my life all the way and there's going to be something nice coming out of it as well,” and that gives me the motivation to survive every time that it comes. I get back to being able to think, "This is going to inspire me, I'm going to do something with what’s happening to me right now while I have my period.” That's how I try to cope with it. 

I read a lot of those endo memoirs that are coming out. Now I want to write one myself and I always wonder how they're going to end. That's the most exciting part for me because we all know that endometriosis doesn't really have an ending. When you're reading this book, it's not an option that there's going to be “Oh, and then she goes through it,  now there's this happy ending.”

It's not over. I'm going to start ovulating in a couple of days, which is going to feel like someone stabbing me, and then there's going to be an okay week, and then I'm going to be in bed, and then it's going to keep going and repeating itself and I'm still going to be going to the doctors all the time. If we do this again in a year, I'll have a ton more stuff to add to my story since it's an ongoing thing. There is no conclusion to a story like this.

Alekszandra

name

placental abruption

lichen sclerosus

vulval cancer

Endometritis

pudendal neuralgia

Müllerian duct anomaly

Nutcracker syndrome

Fibroma

MRKH syndrome

Interstitial Cystitis

perimenopause

Asherman's syndrome

amenorrhea

Vulvodynia

post-ablation syndrome

Deep infiltrating endometriosis

undiagnosed

PMDD

uterine polyp

hydrosalpinx

Ovarian cancer

dysmenorrhea

cervical polyp

fibroids

menorrhagia

Endosalpingiosis

endometrial cancer

Adenomyosis

Ovarian cyst

PCOS

diagnosis

labial resorption

clitoral phimosis

decreased clitoral sensation

tearing on insertion

swollen lymph nodes

white patches on labia

cuts and tears (vulva)

ulcers (vulva)

labia shrinkage

burning

Itching

chest pain

rectal bleeding

insomnia

weight loss

leg pain

joint pain

numbness

shoulder pain

shortness of breath

rectal pain

asymptomatic

fever

acne

hair loss

night sweats

vomiting

moodiness

pressure sensitivity

infertility

anemia

headache

nausea

excess body/facial hair

pressure

constipation

bleeding or spotting between periods

bleeding after sex

Irregular periods

painful bowel movement

frequent urination

painful urination

pelvic pain

Painful penetration

symptoms

Endo Revolution video

Endo Violence Collective Magazyn #3

Images from Breaking This Silence

Art and med

Heading to Bordeaux

Keck School of Medicine Talk

Collective Memory

Curated by Girls

Kaos Festival

Portrait of the artist

Ever-Emerging Magazine

My name is Jaclyn. I was born in Canada and I currently still live in Canada, in Toronto. I am white, I use she, her pronouns, and I'm 36 years old. 

I started experiencing symptoms in my early 20s. The symptoms initially weren't too intense. They were more on the discomfort side of the spectrum. If I wasn't engaged in any sexual activities, then I didn't really notice anything off about my vulva. But the second I started engaging in sexual activities is when I started to think, maybe something is off here. What I mean by that is that any kind of penetration would feel uncomfortable to me. I use the word uncomfortable because pain doesn't quite capture what I felt at that point. When I would listen to my friends talk, I got the impression that sex was supposed to be more pleasurable, more comfortable, easier—unfortunately, this wasn’t my experience. There are a lot of narratives when we grow up around our sexual health and telling folks with vulvas what we should be feeling, and so a lot of that is like, “When you start having sex it'll be painful, you'll bleed.”  I think because I'd grown up in a society where those attitudes were so prevalent, I kind of dismissed the uncomfortability of it all and decided “that's just part and parcel of having a vulva/vagina—it'll get better, or it won't, and I just have to deal with it.” 

It wasn't distressing enough to signal to me that I needed to see a healthcare provider. However, with each year that passed, what was once uncomfortable started to turn into pain. My pain increased in severity as the years went by. Initially it was pain only during sexual activity and it would subside a couple hours after. So, if I was having sex with a person, maybe an hour or two after I would feel burning and aching and soreness of the vulva, but then it would just kind of fade. But as time went on, when I was around 25, there was no break; I was always in pain when sex was involved. Then I started experiencing the burning and stinging pain even when I refrained from all sexual activity. I didn't understand what was happening, but I now know that what I was experiencing was fissures and small tears in my vulva. Tearing and fissures occurred from sexual activity and from non-sexual activity. For example, if I was at the gym and I did a lunge, like a split squat, I would feel as if my vulva was tearing. I would feel as if certain movements would cause me to get cuts on my vulva, which, again, I didn't grow up in a society where there were a lot of narratives around what your vulva should feel like because talking about your genitals was considered shameful and taboo. Consequently, I had no understanding of what was happening to my body or if this was normal or not. 

I started seeing doctors once my discomfort turned into pain. I've probably seen over 30 in my journey to getting a diagnosis. I do think a part of the issue was that I would walk in there and they’d say, “what are you here for? How can I help you today?” And I would say, “My vagina hurts. My vagina hurts when I'm having sex.” So 1) I wasn't using the proper word to describe what part of my body was hurting, and 2) at that time, I didn't have a very extensive vocabulary to capture the nuances of how to describe pain. This is something I think people with chronic pain disorders learn very quickly is how to talk about pain because it's actually really hard if you think about it. If ever you have a friend or loved one who's hurting and they're like, “Oh, it hurts.” You're like, “How does it hurt? What does the pain feel like?” You often just get this frustrated response back like, “It hurts. It's painful. Why are you asking me what the pain feels like, it obviously hurts, that’s how it feels?” Using adjectives to describe your pain in a detailed and clear way is important for healthcare providers trying to make a diagnosis. For example, using the descriptor ‘dull ache’ versus ‘stabbing, throbbing pain’ can help providers rule out certain conditions and narrow down potential diagnoses. In fact, sometimes certain descriptors can tell providers exactly what is going on. In my case, unfortunately, I kept describing my pain in the most simplistic terms—it hurts—and, specifically, telling them the wrong part of my body hurt (my vulva hurt, not my vagina).

When the doctors actually would look at me—because often they wouldn’t examine me at all—they would say things like, “Your partner is probably too big, you look like a petite girl, you're probably just too small for them, or clearly you're very stressed. I think if you just calm down a little, you'll find that it's easier.” Of course, I got the, “Have you tried yoga?” I loved when they would ask me if I tried yoga because I’d literally be sitting there, in full yoga attire, with my yoga mat, strap, and bag propped up against the wall—like yes, I’ve tried yoga, in fact, I just came from the studio that I frequent 3x a week. The most upsetting thing I think a provider told me was to drink wine. First, a provider should never ever say this, right? It's so absurd and we laugh because we hear it all the time. This is particularly challenging for me as I had a history of substance abuse. Telling me—someone who had gotten sober—to use alcohol to mask their pain was incredibly problematic and layered in the painful ways in which this hurt me.

Now, I didn't take their advice, luckily, but it was definitely upsetting at the time. I definitely think had I used the proper anatomical term to describe where I was experiencing symptoms—my vulva—and had I used better adjectives to paint a clearer picture of the pain I was experiencing, I may have gotten diagnosed sooner. For the 50% of healthcare providers who did give me a clinical examination, I think they kind of just grazed over my vulva and put the majority of their focus into examining my vagina, since that was the part I was complaining about. So they would kind of tunnel-vision their focus on my vagina and say, “oh, nope. Your vagina looks great, I think you are just stressed and wound too tight”. 

Over the course of you know 10 years this was my experience, where the pain was getting worse and I would see a provider and they would tell me something along the lines of, “You're stressed, there's nothing wrong with you, just go on and enjoy sex.” It’s a problematic statement for a multitude of reasons. I would leave with no real answers. 

Later in my 20s is when it started getting really bad and began impacting my quality of life. Because as I was mentioning, now it was kind of moving from outside a sexual space to just every day, no matter what I was doing. Even if I was like, that's it, I'm going celibate, I'm going to become a nun, it wouldn't have mattered, I would have still been in pain and had issues. And so later in my 20s, I started experiencing vulvar itch on top of the burning and stinging pain, and it was something that wouldn't resolve with kind of over the counter yeast medications  or removing potentially offending chemicals or products. Nothing really helped. 

Another issue that I think I had with respect to getting my diagnosis was the fact that I was in grad school and I moved around a lot, which means I didn't have a consistent doctor following me from beginning to end. This meant I almost always say a new doctor every time. Each doctor was seeing me with fresh eyes and they didn't understand how long this had been going on and had no reference as to what my baseline—my ‘normal’ was. This meant no one was actually able to observe the changes in color, texture, and anatomy that were happening over time. No one taught me, “Hey, look at your vulva, know what your normal is.” I never looked at my vulva, so I had no idea and didn’t advocate for myself properly. But maybe if I had a doctor that saw me from 20 to 30, they would have realized eventually, “hey, her color's changing, the texture's changing, and she's losing parts of her vulva. I think this merits an investigation.” But again, as a graduate student, you just kind of go to walk-ins or you go to the university clinic, and the university clinic always has different doctors. So even though I would go to the same clinic, I never had the same doctor twice in that clinic, in my experience. 

In terms of quality of life, I stopped going out with friends because I didn't know how bad the pain was going to be. I didn't know if I could sit through the night. I'd be worried that I would be in too much pain from sitting or that I would constantly have to be going to the bathroom. Finding clothes that didn't aggravate my symptoms was a challenge. When I'm in my apartment alone, I can just wear a t-shirt and nothing on the bottom so that I don't have to deal with pain and irritation. But the second I leave my apartment, I absolutely have to wear clothes. I really just kind of became a recluse and withdrew from society and really only went out when I absolutely had to. I stopped working out, which was a huge passion of mine. I loved lifting weights and I just couldn't anymore. 

I was also doing a PhD at the time and it was really hard for me to concentrate on my work because as I'm working on my manuscript, I have these symptoms in my vulva that are just screaming at me. It was so hard to concentrate on building logical arguments when I felt like my vulva was on fire or I was going to scratch it right off. Nothing I did seemed to help. What make it worse was feeling so much distress and physical symptoms and having healthcare providers tell me I’m fine and it’s in my head because honestly, I really started to believe them. I thought I actually might be losing all sense of reality because I couldn’t fathom how my mind could literally cause my vulva to tear open.

I met my now husband around the time that I was finishing my PhD. Sex was complicated with him from the beginning. If we were able to have sex, then I would need like three to four days off to recover because I would tear. primarily at the fourchette, the base of the vaginal opening, which would cause a lot of pain both during and after sex. Afterwards, I would need to give my body a break for that tear to recover for me to then try again, which would tear it again and so on and so forth. And it was difficult with my husband, I think primarily because I didn't have a diagnosis, so I just had to tell him, “Something's wrong with me, I don't know what, doctors can't help me, they just tell me to chill out, but I tear, and sex requires more planning and more modifications than your average person.” And he was like, “That's okay, we'll work with that.” So thankfully, he was very, very compassionate and put my health first. But it was difficult because I couldn't really communicate what I needed because I didn’t understand what was happening to me. 

We got married and three months later it was my birthday. All I wanted to do was to  have sex like a “normal person” on my birthday to celebrate like lots of people do. I use air quotes here because I know there is no such thing as a normal person, but despite this, I just wanted to feel normal, so I forced myself to have sex. My husband didn't put any pressure on me, but I put it on myself because I just wanted my body to work. Unfortunately, that was one of the most painful experiences for me. After this we walked to my favorite restaurant, which is only about 20 minutes, and it was the most excruciating, distressing walk of my life. My vulva was just on fire, stinging, itching. I was like, “How can this be in my head?” And we got to the restaurant and as I was eating my favorite food with my favorite person surrounded by beautiful art and music and smells, I realized I don't think I can have sex anymore. I'm 31 and I don't think I can have sex anymore because there's clearly nothing wrong with me and it's all in my head and I can't fix it with my head, so I guess this is it for me. 

The next day I went on the internet and I searched something like sexual health clinics near me, and I found this clinic called Hassle Free Clinic in Toronto. And they were allegedly working in the vulvovaginal genital health space. They were very LGBTQ+ positive and seemed like a safe and knowledgeable space to go to seek help for what I was going through. You don't book an appointment, it’s first come first serve. They opened at 8, I was there at 7. I really felt, for the first time, hopeful, because I thought that maybe what I was doing wrong in the past was just going to regular kind of GPs and doctors who weren't specialized. And if it was all in my head, then maybe they could provide me with appropriate counseling to help fix whatever was going on in my head. 

They open up, I get called in, and I tell the doctor my history. She did examine my vulva as well as my vagina, so I’ll give her that. However, at the end of the examine, she stated, “Well, there's nothing wrong with you, but you might have multiple sclerosus, but there’s nothing I can do for you” and then she sent me home. That destroyed me again in multiple ways because 1) my mother had multiple sclerosus and it does have a genetic component. And so I thought, “Holy shit, like, do I have MS like my mother?” My mother had a very aggressive form of multiple sclerosus too. She was wheelchair bound and had difficulty with her vision, movement, and pain by the time I was 9 years old. So that's immediately the kind of imagery that comes up into my mind, thinking, “It's not just my vulva, I won't be able to see or walk.” She didn’t even refer me to a neurologist or even say, “Chat about this with your GP.” And so at that point, I gave up. I said to myself, “I’m through with doctors. There's no point.” Any glimmer of hope that I had had was completely squashed out on that day. 

A couple of weeks later, I went to see my family doctor (I finally got a family doctor after I completed my PhD). I have a couple of other chronic pain conditions, and so I was actually there for my low back, completely unrelated to my vulva, because I had given up. I had made an offhand comment about my vulva while we were talking about my back, and then she said, “Whoa, whoa, whoa, hold on, I'm sorry. We'll continue with your back in a second, but what did you say about your vulva?”. Now, in fairness, I did still say the word “vagina.” But, you know, I said, “Oh, like, sex is unbearable, I'm itchy all the time, I am burning, it feels like I have like a hundred paper cuts all over my me and someone is  pouring rubbing alcohol on it. I feel that all the time. But don't worry about it. I've had like 30 doctors tell me it's nothing and it's in my head and I just have to deal with it.” She looked at me and said, “Do you mind if I look at you? I'm your family doctor and I would like to be the one to tell you that it's nothing.” I replied, “Sure, what what's one more doctor looking at me down there?”

So she brought me to the other room, which has the chair with the stirrups and instructed me to undress and lie on the table. I think it took her one second of entering the room, looking at my vulva, and said immediately, “Oh, you have lichen sclerosus.” And I said, “I'm sorry, what?” And at that point, then she started doing a proper clinical exam where she got a little closer.

At this time my whole vulva, which should have been pink, had turned off-white, and I had lost all of my labia minora. My clitoral hood had fused completely over the glands of my clitoris. I was very, very scarred. I had active tears and cuts and that, coupled with my symptoms, she was like, “This is classic lichen sclerosus.” 

At this point, I'm panicking because I've never heard about this before. To me in my head, when it came to kind of vulvovaginal issues, you either had an STI, a yeast infection, and like that was it—other than menstruation and menopause, those were the conditions that people with vaginas could have. She tells me to get changed and meet her back in the other room. In the other room, she starts telling me about lichen sclerosus and I'll be honest, I don't know that I can tell you a clean retelling of what she said because I kind of dissociated. Like I kept coming in and out of my panicking, spiraling, and going completely numb and I couldn’t pay full attention. So whatever I tell you my doctor said, take it with a grain of salt because I wasn't fully present. From what I can remember, she told me it was autoimmune, that there’s often a family history, it can cause sexual dysfunction, increases my chances of developing vulvar cancer, and handed me an RX for Clobetasol and out the door I went. Now the second I heard “cancer,” that was kind of the end of my being present because now in my head as somebody with health anxiety, generalized anxiety, who's in a very vulnerable place, I was like, “I have cancer or I'm going to get cancer”.

In Canada, you have your GP who follows you in general, and then in instances where you have a specific condition, they refer you to a specialist. In my case, I was referred to a gynecologist, however, that wait time was 9 months. And 9 months may not sound long, but it’s agonizingly long when you have health anxiety. In those nine months, my mental health really, really deteriorated because I just, I had so many questions, and so much anxiety.

The same day that I got the diagnosis, my husband came home and I just sobbed as I told him, “We'll never have sex again. I have this disease,” and bless him because he was so understanding and he was like, “That's okay. There are other ways to be intimate. We'll work around this. Your health and comfort are the first priority, we'll focus on that first.” I couldn't have asked for a better partner to support me in this, but, I was very distraught because at 31 years old, I was three months into my new marriage. I didn't expect to be telling my husband, “No sex ever again.” 

I really developed very bad health anxiety. I thought that in the nine month wait, I would develop vulvar cancer because initially, the lichen sclerosus didn't respond very well to the steroids. I thought that the steroid was going to work for me in the same way that penicillin works for strep throat, which is couple pills, a couple of applications, and I'll start to feel better. That is true for some people with LS and steroids, but for the most part, it can take a few months for the medication to start working. And I think, had they just set my expectations and said that it can take a couple months for things to settle down, to be consistent, don't give up on it, maybe my mental health would have been better. But because I thought it was supposed to work right away and I wasn't responding, I felt, “Well shit, I'm not responding. In fact, I seem to be getting worse. Therefore, it must be vulvar cancer. Things will probably just progress and get worse.” 

These were not rational thoughts, but I couldn’t help but catastrophize. I stopped going out with friends; I stopped working out. I would actually dehydrate myself deliberately because it would sting when I would urinate because of all of the open cuts. I live in a very small apartment in Toronto. The walk from my bedroom to the bathroom is maybe six steps total. And that was even too far for me. I would even try to minimize how often I had to walk and move. I basically stopped living. Anything that brought me joy, I cut it out. I fully became bedridden with anxiety and depression. 

That said, I recognized and I knew I needed help. And I knew help needed to be more than calling a friend. I knew I needed professional support, that this was too much. I found a sex therapist because I wanted somebody that could work with the anxiety and health anxiety, but a lot of my anxiety had to do with feeling like I might lose my relationship, and the grief around losing parts of my body. That was a real thing to wrap your head around. No one tells you, “Oh yeah, parts of your vulva can completely disappear and reabsorb into another part.” That sounds like an alien, body parts absorbing the other body parts; I was completely and utterly unprepared for something like this to happen to me.

My confidence in my body obviously plummeted because I thought I was the most ugly, most disgusting, repulsive human being on this planet because of my vulva. There were so many issues that I knew I needed support with. Living in a big city does have its perks in that there are a lot of more specialized individuals, so I did find a therapist that worked with patients who had chronic illnesses that affected their sexual health. That changed my life completely for the better. I'm not saying it was miraculous overnight, but it was completely life changing. All of those issues, we just kind of worked on them little by little. It was very slow, very deliberate, and very healing. So that by the time I got to that nine-month mark, I was a little bit calmer, but still, still had a lot in me. 

When I went to that nine-month appointment, I immediately bawled, I could barely communicate with the doctor. Nine months is a long time for an overthinker to think of questions, so I think I had like 50 questions for this poor man and amazingly he answered every single one of them. Thank God I had them on a paper because I wouldn't have been able to remember them. 

Luckily it was not vulvar cancer and he said my skin looked pretty good—kind of impressive given I wasn’t applying my steroids properly. Normally you start applying it 1x per day for 1 month, and then slowly taper into maintenance of 2x per week and you would soak before to allow for optimal absorption. However, I applied daily—sometimes more—for the whole nine months without soaking and I would just kind of slap it on instead of gently massaging it into my vulva. For most people, this would be way too much steroids; luckily, I experienced no side events. But when I told him that he was like, “Oh, you can just drop down to two times a week, like you're in remission now.” He also said I had vestibulodynia, which is pain kind of in that vestibular area of the vulva when provoked, so when touched. Because he put a Q-tip there and I like about jumped and screamed off the table. So he was like, “Let's focus on the vestibulodynia and the pelvic floor muscles. But the LS itself is looking good.” I worked with a pelvic floor physical therapist and none of this happened overnight, but it did really help. 

He prescribed a topical medication for the vestibulodynia, and I also worked with a pelvic floor PT on that as well as the overactive pelvic floor muscles, because with all the medical trauma and 10 years of being in pain, my muscles were just like permanently locked, which is of course only going to exacerbate any pain that I'm feeling. We did a lot of breath and nervous system work; we didn’t do internal work until way later. It was all breathing, learning how to become in tune with the pelvic floor, desensitizing touch and kind of breaking that connection where the brain codes every touch as painful. It was only like, later on, did I start working with dilators. 

Today I am three and a half years in remission. I don't have any symptoms and I'm actually completely able to have penetrative sex again, which is really, really incredible. And I think that the reason I'm able to do this was treating my LS and treating the vulvar tissues and getting them healthy again, working with pelvic floor PT, doing that kind of brain desensitization work, the dilators, all of that, and just being really, really patient with my body.  So I know we want a quick fix where we just want our bodies to work immediately. That was not the case for me, but eventually I did get there. And it was really amazing because the first time I was able to (have sex), I cried afterwards, not because I was in pain for once, but because I actually never remember sex being completely pain free or being comfortable or feeling good. The best-case scenario for me was that it was just kind of uncomfortable. I don't have any memory of it being anything other than that. To go from the place where it was so excruciating that I told him we'll never do it again to being pleasurable, it was really outstanding for me. 

I think it took about 11 years to get my diagnosis, and then a couple other years to heal my vulvar tissue and get into remission. But it also took time to heal my mind and my body overall from just the trauma that kind of comes from being treated that way from the medical system and living with such intense symptoms while people are just telling you it's all in your head, you know, it's difficult. I remember when she said it's lichen sclerosus, as terrified as I was, I was also crying because it was one of the most validating things for me because I really did believe them. I really thought that my mind was so powerful that I was tearing my vulva open with my mind because I was too stressed, because I was wound too tight and I was a type A or whatever they were telling me. To hear, “Actually no, you do have a condition that is causing these symptoms. This is not just a manifestation coming from your mind. This is real.” it was simultaneously terrifying but also so validating and healing to finally get an answer. 

I think that's sometimes the hardest part is when you know that something in your body isn't right, but then all these authority figures are telling you, you're fine. There's nothing we can do. You're fine. I'm very grateful that I finally got that diagnosis and very grateful to be in a good place with my lichen sclerosus today, but it was definitely a journey. This is my story.

Jaclyn

I suppose it started for me from about four or five. Because in the UK, quite often, when you're that age and you go to nursery school, you have to sit on the floor, which is obviously quite hard. I found that quite uncomfortable and I used to quite often get told not to fidget because I wouldn't keep still. I was in a bit of pain then as well. So really I suppose about five the symptoms started. 

 My mum only found out, because she would hear me crying in the toilet. Having lichen sclerosus is quite painful when you go to the toilet if you've got any cuts or tears. She would ask me what was wrong and I just said it was burning. After a few times of hearing that she took me to the doctor. I think I was about eight or nine at that stage and the only symptoms that she was really aware of was that it hurt when I went to the toilet. Other than that, no one really asked me what my symptoms were, so the GP just said that I had cystitis. I was never looked at or anything I was given treatment for that, and it helped a tiny bit but not for long. 

 For the next few years the sort of symptoms I had were itching, soreness, and pain. As I got slightly older, as a teenager I was quite embarrassed, so I didn't tell my mum or I didn't really want to go to see a GP especially as my GPs at the time were all male. So I didn't go.

 I did go for my regular smear tests throughout my life, so I would be seen by a nurse for that and nothing was ever said then. As time went on, the symptoms started to affect me a bit more with the itching and soreness. I did go and see a GP but my vulva was never looked at, and I was automatically told I had a yeast infection, and I was given treatment for that, which I used. I went back a couple more times, and saw a couple more different male GPs again, and was never looked at, and was just told it's thrush. 

 I never used the right words, because growing up it was “private or down there or vagina.” So as I was speaking to GP's that was what I would use, them words. And they never used the word vulva back to me either.  And I don’t think I was being really clear about what my symptoms were.

 I used to carry on treating myself as well. I used to just try and research a bit to do with itching, soreness, and I would try different creams, but nothing really made much of a difference. I just carried on, really. I had two children in that time. Smear tests were always clear, and no nurses ever mentioned anything about the look of the vulva or anything. I thought, if I did have anything wrong, it wasn't anything serious, that it was just what every woman had. 

 It wasn't until my late 30s that the symptoms started to get worse. I noticed that I was getting tears more and I had a particular tear that didn't heal. I had it quite a long time, but I thought because it was in the perineum where you often tear when you have a child that it would repair by itself but it didn't. 

 I went back to doctor. This time I saw a female GP and she actually did look; she took a swab for the first time ever and that came back as negative to having a yeast infection. She also did some blood tests, and when I went back to get the results, she didn't know what it was, so she just said that it's probably early menopause. So again I'm thinking it can't be anything urgent or important. I then noticed that the tear that I had started to change and it started to look more like an ulcer and I thought I must go back to the GP again but for all the times I've been and been told it was thrush and I just couldn't be bothered to go. So again I started to apply different creams and making it worse. Within about three months, this was in 2016, I noticed that the ulcer started to get bigger and now it was making it more difficult. Every time I went to the toilet I sat down, wiped, I could feel it. So I thought well I've got to go back to the GP. 

 She did look and she said it was herpes and to go to a sexual health centre. I wouldn't have gone because I'd been with my husband at the time more than 25 years. I started to think, you know, “Has he been unfaithful? Have I got this?” And then I just thought, “No, I haven't got it.” And I think from the look on my face, she realized that maybe it might not be. So she asked me how many partners I've had and I said “Just my husband.” So she looked again and then said “Actually it could be something called vulval cancer.”

 I had never heard of that and I was quite shocked. She said that she was going to get me an appointment within two weeks to see somebody to get a biopsy. I did get an appointment quite quickly, and they took three biopsies from the vulva area one where the ulcer was and two in two other places. I went back for my results probably about eight days later to at the age of 43 to get told I had both lichen sclerosus and vulval cancer. 

 Both conditions I'd never heard of, and never seen any information anywhere. So I did a little bit of research in both once I come home because I was so shocked I’d never heard of either of them. 

 Obviously getting told you've got cancer was quite scary, because I'd had that ulcer and that tear for well over a year. So then I was waiting to get some more scans done to find out what stage the cancer was. I sort of started to believe that this is it, I haven't got long to live, you know, I must have had this cancer too long. I started to plan my own funeral in my head, started to talk about ways of helping in the house really, so that my children and my husband didn't have things to worry about. I went on a bit of a spring clean, and that was how I dealt with it really just getting rid of all my stuff I know I wouldn't need so they didn't have to do it for me. 

 Once I did get the results, I was told it was only a stage 1b, which was quite a relief. They said that it was quite easy to treat with surgery. Unfortunately it wasn't that easy. I did have surgery to remove the tumor. They also took a sentinel node biopsy and checked the lymph nodes in my groin to see if it had spread. The lymph nodes come back as clear but they couldn't get clear margins because the tumor had grown too aggressively in the few weeks between getting the scans and the surgery. 

 Because they couldn't get clear margins, I had to have five weeks of radiation, which isn't easy, especially in the groin and vulva area. The treatment itself isn't painful but as the symptoms start to affect you of the radiation you get tiredness and fatigue and then you start to get burning and blistering, and it affects your bowels and your bladder. I finally got through all that and had a scan and they noticed that one of my other lymph nodes on my other side looked a bit enlarged. They weren't sure if that was to do with the trauma of the surgery or the radiotherapy, so they kept an eye on it. 

 By the December of 2016 they decided to go in and remove the lymph nodes that looked a bit dodgy, and it turned out the cancer had spread. It was then upgraded to stage 3 cancer. I was quite unwell for a couple of months during all that because the surgery itself, I got an infection. I had cellulitis so I ended up spending about a month of January of 2017 in hospital. I had to wait until all that really had healed before they then decided they wanted to do more radiotherapy. They wanted to aim it at all the lymph nodes in my groin and my abdomen. I had to have 33 sessions of radiotherapy where they targeted an extra eight boosts on the left side where that was the where the cancer had spread to. The treatment was quite difficult, and all in all probably took about 14 months.

 Once I come out of that I think, that's when it affected me, because I think from getting the diagnosis to the first all clear scan which is in the July of 2017 I think I was on autopilot. It was just like, “Get on with the treatment get everything done.” I ended up having four surgeries as well during that time, trying to be strong for family and everybody else. I felt quite positive, you know, I was given treatment plans both times, great surgeon, great team. But once I got the all clear, I found it quite hard to be quite happy. Everyone else around me was like, “oh, you’re cancer free!”  And it just seemed to hit me harder then actually. That was the first time I really cried, I think, when I first was given, not the all clear for that, but knowing that the treatment had all finished. Because obviously I just was on autopilot and had just carried on all that time. Then you're left really by yourself once the treatment finishes. But that's when I think you probably need more help because that's when all the side effects and the mental health side of it starts to affect you. You know, not everyone's like me, some people do get more help after, but unfortunately I wasn't given any  help for mental health. I wasn't really up to fight really to get any help for anything. 

 It turned out that the radiotherapy had caused lymphedema in my left leg, abdomen, and vulva and pelvis. So those who don't know what that is, that's where the lymphatic system stops working and fluid builds up. So my leg, my vulva, pelvis, and abdomen swells up. It can be quite painful and uncomfortable. I have to wear compression garments and having had vulva surgery, radiotherapy and having lichen sclerosus having anything in that area especially tight it just would aggravate the symptoms. All the skin would start to peel off. My lichen sclerosus would get really bad so I couldn't wear the compression tights. I spent probably two or three years trying to find some sort of compressions I could wear on my leg that wouldn't aggravate all the other symptoms.

 Because I had the radiotherapy at 43 I was put straight into early menopause so rather than getting gradual symptoms it was all full-on, all symptoms all at once. I was referred for that, was given HRT, I'm still trying to tweak that now to try and help with the symptoms. 

 With the lichen sclerosus, I sort of put that to one side until all the cancer treatment had been done. Then I started to look more into what lichen sclerosus was, and that I think was when I became quite angry. For 38 years no one's ever suggested that I could have it, and I've never seen anything about it. If I had been diagnosed with lichen sclerosus much earlier and knew about vulval cancer then yes, I might still have got cancer but it definitely would have been caught a lot earlier. Maybe at stage one, where I wouldn't have needed radiotherapy twice, and I wouldn't have had the side effects I've got today. 

 So with the anger really, I decided to put that into helping other people to make sure nobody else went through anything that I did and I'm trying to get more awareness of both conditions. So I started my own awareness pages. I teamed up with Emma Norman, who also has lichen sclerosus . So, you know, we do the website together and campaigns together. I've worked with the Eve Appeal to get some more training courses because having had eight smear tests over those years not one nurse noticed any difference to the change in my vulva and yet I had all the signs of lichen sclerosus, white silvery skin, my clitoris had buried, labia had shrunk, tears, I literally could tick every single box and that started quite a young age. So the training is aimed at primary care but mainly for nurses but unfortunately it's voluntary because there's no training for them.

Unfortunately my remission came to an end in April 2023. I had my routine check up in March and my consultant saw a thickened area she didn’t like the look of so I had a biopsy which came back as dvin which is a pre cancer. I had surgery to remove the area which was in my perineum area again , they removed more than planned and also didn’t stitch it or use flaps but was left to heal by secondary intention (left open to heal) this was so wouldn’t be to tight and tear . The results of what was removed also came back as cancer, they got clear margins from the cancer but not the dvin. I then had a CT scan and MRI and now am waiting for those results and what’s next. 

Clare

My name is Carys. My pronouns are she, her. I'm 29 years old. My ethnic background is White British and I live in Glasgow now, in Scotland, but I'm originally from London. My experience with gynecological pain and issues started when I first got my period when I was in year eight. I think I had already turned 14 but I might have still been 13. I know that I was going to travel to my grandparents that evening, which was a really, really long car journey. 

I started my period while I was at school and I was too embarrassed to tell the teacher. I just had my hour's lunch break and my teacher was really, really scary and mean. I felt too embarrassed to tell her that I'd started my period. My friend in front of the whole class said, “I've started my period and I need her to come and help me,” and pulled me out of the room.

She was so calm and was laughing while I was shaking with fear and bright white, that it was obviously me who'd started my period and she was covering for me. My mom had basically made me aware that I could start my period from probably I would say around the time I was 11, 12-ish. I'd always been prepared for it to start and I didn't realize it was going to be so painful. 