Collage of a red uterus with growths coming out of it and the ovaries and fallopian tubes. Collage is on a cutout gold metal leaf background with silver stripes.

Endosalpingiosis

painful bowel movement

pelvic pain

menstrual pain

bloating

nausea

fever

My name is Anna Marie. I am 27 years old. My pronouns are she, her, hers. I currently live in Madison, Wisconsin. My story with pelvic pain and my reproductive story really starts when I got my period at around 12 years old. In elementary school, it was normal for me to have to take a full day out of my activities just to lay on the bathroom floor, because of the pain and nausea and fever, chills, body aches that came with my cycle. People had always complained about their periods and how terrible they are, and so I thought that was normal.

My mother had gone through an accident when she was younger, that damaged her reproductive systems, so she was not able to have kids. I'm adopted. With her reproductive stuff, she went into menopause really early. She didn't have a ton of experience with it at all. I was just left on my own.

It just became part of my life that from 12 until 16, I would just plan that at least one, on worst case, two days of every month, I would just miss school, miss activities for whatever. It was just what it was. I got over it. I was really ill and in a lot of pain, but I moved on. Then at 16, I went to a gynecologist for the first time, an OB, and talked to her about what I was experiencing and feeling.

I think it plays a big part in my story that my mom, while she was wanting to protect me, was very hesitant about medical diagnoses or too much medical intervention that could throw off my natural rhythm. She was hesitant of me being on birth control. I presented all the information that I had found on my dial-up computer about how birth control could potentially help with severe period pain, and could at least regulate my cycle to where I would know to plan ahead when I needed to take time out of my activities or my days.

At 16, I got on the lowest dose birth control that I could get on, which basically minimized my periods to once or twice a year. Because I only had to deal with it once or twice a year, I just ignored the problem and moved on with my life. It seems so silly that I literally used a decade, from 16 until 26 of my life where I only had 29 to 30 days out of the month instead of the normal 30 to 31. I only had a four-day workweek sometimes because the pain was just that bad. If I miss taking even one pill, it would trigger pain and cramping.

At 26, I decided that it had a severe enough impact on my work. At this point, I was in grad school for cellular and molecular pathology. I had a really good concept of what's normal, what's abnormal, specifically with diagnostic differentials. I basically had to take medical school in one year course, as the first part of my graduate training. Through that, I got to learn what was normal, what was within the bounds of pain. At that point, I realized that, “Okay, enough is enough”.

I sought out any specialist that I could find here in Madison, Wisconsin, who had experience with endometriosis, PCOS, and other female reproductive disorders. I went to her and just explained everything that was going on. We started small with ultrasounds and a colposcopy, to see what's happening in the uterus and vaginal canal and everything looked fine. The pain was severe and was interacting with my gastrointestinal tract to the point of gluten sensitivity.

I was bloating up basically, by eating anything other than rabbit food. At that point, we decided that it would be worth it to do laparoscopic surgery. My hormones had tested normal. The surgery was to see if there are any growths, lesions, cysts, anything that we hadn't seen on ultrasounds that could be contributing. Thankfully, my doctor was training under a specialist and a woman who specializes in endometriosis pathology. My doctor called her in for the day of surgery and diagnosis.

I was blessed that I had two surgeons, diagnostic pathologists, during my procedure. They found that it was cystic like fallopian tissue, epithelial tissue of the fallopian tubes, which is a hallmark of endosalpingiosis. They took biopsies and they did ablation, which essentially cauterizes anything that they found of these lesions. I essentially had growths on the back of my uterus, connecting the back of my vaginal canal to my rectal canal. I also had an adhesion the size of my pinky (that turned up being larger than my appendix) on my left side that was just connecting one of my left ovary to part of the intestines. Every time I had a bowel movement, it would agitate that adhesion. That was a huge source of my pain. They found quite a few other small growths that they tried to take care of while inside. I had an appendectomy as well, because the appendix was really close to a lot of growth. 

With endosal, the cells are different (from endometriosis) and so the cells, they adhere differently. The cauterization of those cells has a better response for stopping further growths from growing in that region. Because otherwise, if it touches up against the fallopian tube one more time from a bowel movement, stretching, and exercise, there's a risk for transfer, and it can just start growing again.

The crazy thing about getting this diagnosis coming out of surgery hearing endosalpingiosis is, “What? How is it different from endometriosis?” I started doing all this research and learning that it's very different, because endometriosis is at least stuck within the interior of the uterus. There's not too far that it can go. It's stuck within the reproductive tract. But because the fallopian tube epithelium is also on the exterior of your fallopian tubes, it's able to travel anywhere.

[NOTE: Endometriosis can also be found in just about any organ of the body, but it doesn’t spread. You just have it where you have it.]

If it bumps into or rubs against intestines or other pelvic organs, it's able to transfer, it accesses the bloodstream, it's able to passage and transfer. There's a case in Europe where a young woman had a brain tumor. After she passed, they did an autopsy and discovered it was endosal that had lodged and started growing. 

It's not responsive to birth control. All these years thinking that at least estrogen and progesterone, in addition to my birth control might alleviate my symptoms, turns out that these cells are not receptive to estrogen. Their growth isn't hindered by birth control. Essentially since 12, when I had my first period, the fallopian tubes have been aggravated and inflamed and these tissues and cells are just able to grow elsewhere. It's expected that in the future I will have to have more laparoscopic surgeries to remove any lesions or growths. The best treatment is to be pregnant because during pregnancy, the cell inflammation goes down a lot, specifically in the fallopian tubes and ovaries. It's part of the maternal-fetal acceptance of this fetus growing within us. This down-regulation of activation and inflammation means that the calls slow down temporarily, otherwise, they keep growing.

The other recommendation that's suggested is a hysterectomy. At some point after we have kids, that's my treatment plan because other than that, the other treatment plans are just pain management, symptom management, trying to live a full life.

It was awesome getting an answer, getting a final diagnosis, and having something that I can go forward with. The disease itself is very rare. It's very understudied. Compared it to endometriosis, endosal has maybe 100 references per year, whereas endometriosis has at least 1,000 new publishing references a year.

We don't know how wide of a population it affects. It's almost always an accidental finding. I have since joined the Endosal Foundation which was started out of Janesville, Wisconsin. Another young woman, here in Wisconsin, discovered that she had endosal about 20 years ago and realized no one knew what the heck it was. When she found out, there was nothing to be known about treatment, diagnosis, and only a couple publications.

I've joined as their vice president to help bring awareness and to just have an online presence sharing that endometriosis and PCOS aren't the only causes of pelvic pain and reproductive health concerns. We also hope advocate for the endosal to be added curriculum so that in the future, medical students, or reproductive pathologists, such as myself, are taught about this disease.

In my graduate studies, I had a month dedicated to learning the reproductive tract. So only, say, 8 lessons on just the female reproductive tract. We talked about endometriosis, but we did not discuss PCOS. We covered HPV and cervical cancer extensively, but nothing else as far as hormonal and women's reproductive pathologies that could impact life, fertility, happiness. The diagnosis has been a good thing because I've been able to advocate for it.

I work in a lab and with other medical professionals, and so I can say, “Hey, have you seen this? Have you heard about it? There's a paper over it, maybe it'll come up.” 

I did not intend to get my Ph.D. in Reproductive Pathology. I was very much into microbiology and pathology. The pathology part is what led me to UW-Madison, and there I joined a primate lab that studies Listeria monocytogenes which is a foodborne pathogen causing severe illness during pregnancy. Then through that research, I've gotten exposed to women's reproductive health and pathology. I started doula training so I can help women have better birthing experiences, and it's just opened this whole new world that I didn't think I'd be into. This diagnosis definitely led me in to have a personal investment in women's reproductive health.

I had a surgery in '21 to take care of most of the lesions and adhesions. I felt really great for almost six months. I felt like, “Oh my God, this is what women are supposed to feel like”, but I could tell when they started coming back. I'm now where I have about one “health day,” as I call it, or a pelvic pain where you just have cancel plans and rest per month. I only have one of those a month which is not too bad. Before the surgery, it was 10 a month, and so one a month is a great improvement.

Now with my husband, we're just in the family planning stage. We want to start having kids in the next couple years or so and then after that, I plan to have a total hysterectomy. My dog and I are going to have little matching tattoos. Spay dogs get little green tattoos on their stomach, so I'm going to get a little tattoo because I'll be spayed [laughs].

My health journey right now? I'm just in this waiting game where I'm weaning myself off of birth control and getting my hormones regulated, but also trying to get my body ready for pregnancy, which I think I'm going to really enjoy because apparently, I'll just feel wonderful during that and there'll be no adhesion growth. Then after that, probably within the next six to nine months after delivering, I'll have to plan surgery either to remove adhesions and lesions because after pregnancy they get really exacerbate by the postpartum hormone cascade, the withdrawal of oxytocin causes this inflammation that just makes it way worse, so I'll plan to either have a total hysterectomy or get another laparoscopic clean-up of everything then, but right now we're doing good. 

I'm in the fifth year of my graduate program now, and so because I study a reproductive pathogen, I can’t get pregnant, so I’m dependent on finishing my studies. It's a timeline controlled by my research. 

It's crazy to me as a pathologist to think that these cells grow so similarly to a cancer, but are still so similar to our own cells, and that we have these connections between our reproductive tract or, in my case, intestines, or in other people's cases, it's connected to their organs and to other tissues that cause them a lot of pain or symptoms.

Thinking about the fact that this tissue grows anywhere within the body and just causes these adhesions or connections between your reproductive tract and other places, is just crazy to me. It's just a crazy thought. 

I would agree that I see things through the lens of the scientist. Which has probably helped me cope with the diagnosis a lot in that I have the access to scientific articles because of my education status, and that I have the ability to just surf the internet, read, understand all these papers, and make these connections about what's happening in my body and the research that's out there. It's a blessing I don't take for granted.

Anna Marie

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

cervical cancer

Vulvodynia

post-ablation syndrome

Deep infiltrating endometriosis

undiagnosed

PMDD

uterine polyp

hydrosalpinx

Ovarian cancer

dysmenorrhea

cervical polyp

fibroids

menorrhagia

endometrial cancer

Adenomyosis

Endometriosis

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

abdominal pain

rectal pain

asymptomatic

acne

hair loss

night sweats

vomiting

moodiness

fatigue

ovulation pain

pressure sensitivity

infertility

anemia

headache

excess body/facial hair

pressure

diarrhea

constipation

bleeding or spotting between periods

bleeding after sex

Irregular periods

back pain

frequent urination

painful urination

heavy bleeding

Painful penetration

symptoms

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. 

It was this burning pain and it was quite widespread as well. Obviously, I'd heard that you would get period pain. Nobody said, “Oh, but it should be mild discomfort.” 

I remember a friend’s mum sent me chocolates and a note saying congratulations on becoming a woman. I definitely did not feel like I had suddenly become a woman. I think I often had a tendency to take things quite literally because I've got mild Asperger’s. I think this idea of “oh, now everyone thinks I'm a woman and that's it. I'm a grownup” really frightened me.

Then by the time I was 15, I started getting this pain with ovulation. It felt like someone trying to poke a knitting needle through a membrane. People said to me that makes sense because the egg has burst through the wall of the ovary.

No one told me it wasn't supposed to be agony. It would make me just gasp and cry. It was agonizingly painful and definitely way more on the left side. 

My periods got easier as I got to my early 20s when I went vegan.I had a few years there where they weren't as bad as they had been, but they were still very painful. I had internalized this idea that I have a low pain threshold. I'm one of those people who's just got tons of very, very mild forms of many different medical conditions. I've got very mild EDS as well, hypermobility type. One of the things that they say about EDS is that you can have a lower pain threshold because your body processes pain differently. It can affect your response to anesthetics. It can affect how the nerves respond to pain. I just assumed I had a low pain threshold and that I was just a bit of a baby. I would get very, very sick during my periods. I would get upset stomachs and then it was in late 2014 that I started getting these stabbing stomach pains every day. At first, I figured it’s because I’d massively overhauled my diet by going vegan.

I was the most unlikely person that would ever go vegan. I found that it also helped with migraines. I used to get migraines around my period as well, from the hormonal fluctuations. I did go to the doctor quite a bit for these symptoms as well around this time. I was having these sharp stabbing stomach pains and I was feeling very, very nauseous.

They chalked it up to anxiety and diagnosed me with IBS and didn't really do any real investigations. 

They gave me anti-anxiety medication, which helped a little bit with the stomach pains, but it actually didn't really get rid of them. The issues that I was having, it would be like, I would eat a small amount of food. I'd be ravenously hungry. I'd eat a tiny little bit and I would swell up like a balloon and then just couldn't stomach any more food. Then, obviously, half an hour later, get really hungry again, repeat, repeat. 

This went on and I remember the worst periods that I've ever had, in late 2016.

Once was when I was coming back on the train from Winchester, where my partner lived at the time and I was studying in London and I remember just being so nauseous, couldn't stop being sick, really, really heavy, painful period, clotting. It was absolutely dreadful. I genuinely was half convinced I was hemorrhaging or something and I wanted to go to A&E. It was honestly terrifying. I was just like in the station toilets for ages and ages. It was awful like, “Oh my God, what do I do? Is this a period or am I literally hemorrhaging in some way?”

Then the second time was when I was away doing an exhibition in Leads. I woke up in my hotel room and had got my period unexpectedly and it was just so much pain. The best way I can describe it is when you try to tear a piece of fabric apart at the seams and you pull on it. I just remember this like blinding flash of a tearing feeling and next thing I knew, I woke up on the floor and I'd slept through opening the gallery for the morning.

I'd, obviously, just fainted but it didn't even occur to me that I'd quite clearly just passed out from pain. I just picked myself up and just rushed to the gallery as quickly as I could. 

In summer 2018, it was over the summer and there was one time when I was about to go to a music festival and I was going to get my period at the festival, and then it didn't stop. I assumed it was just stress, but then, funnily enough, today is the first day my periods have ever come back to a regular cycle.

They used to go 28, 28, 28, 27. I had a really regular cycle and funnily enough, my mom, she has the same thing, 28, 28, 28, 27. Then my periods started getting further and further apart they would go up to 30 days 30 plus. It once got over 40.

Then today it was the first day since that summer that my periods have gone back to 27 days. I actually can't believe it. I'm so happy about that. 

I started getting so bloated. I looked like I was six months pregnant. I've got pictures of it now. I'm looking at it and I'm just like, why did I think this was normal levels of bloating? I would get it during my period, but I would also just start getting it mid-cycle, just literally my stomach would be sticking way out. People would actually think I was pregnant.

Then I started getting mid-cycle bleeding around early 2019, but I put off going to the doctor. My upset stomachs were getting way worse as well. My periods were so irregular. Sometimes they just wouldn't happen. They were getting really, really light too.

Then by the summer of 2019, I was like there's something incredibly wrong with me. I couldn't sit down without pain. When I sat down, it would feel like, my organs stacking up on each other and pinching one another. I didn't even know how to go to a doctor and describe that, but because it was getting a lot worse. I could tell that something was growing or changing or moving. That was the point where I was like, “I've got to go to the doctors.”

I’d started doing adult ballet and gymnastics classes in 2017. I had stopped lessons around the same age as start of my periods.