Collage of a green lacy vulva with multicolor lichen sclerosus and vulval cancer lesions, on a gold metallic background. 

vulval cancer

lichen sclerosus

swollen lymph nodes

white patches on labia

cuts and tears (vulva)

ulcers (vulva)

labia shrinkage

burning

Itching

painful urination

Painful penetration

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

name

placental abruption

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

Endosalpingiosis

endometrial cancer

Adenomyosis

Endometriosis

Ovarian cyst

PCOS

diagnosis

labial resorption

clitoral phimosis

decreased clitoral sensation

tearing on insertion

chest pain

rectal bleeding

insomnia

weight loss

leg pain

joint pain

numbness

shoulder pain

shortness of breath

abdominal pain

rectal pain

asymptomatic

fever

acne

hair loss

night sweats

vomiting

moodiness

fatigue

ovulation pain

pressure sensitivity

infertility

anemia

headache

nausea

excess body/facial hair

pressure

diarrhea

constipation

bleeding or spotting between periods

bleeding after sex

Irregular periods

back pain

menstrual pain

painful bowel movement

bloating

frequent urination

heavy bleeding

pelvic pain

symptoms

Torrance Art Museum

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Ever-Emerging Magazine

Painful menstruation has been a generational trauma passed down in my family. Almost every woman in my family has either had surgery on their uterus, like having a hysterectomy or a laparoscopy. Most recently, my sister had a fibroid removal surgery that ended her life. It shouldn't be something that ends your life. It shouldn't be something that spiraled my life so far out of control.

My period started when I was 13 years old, but it wasn't until I was 15 that I noticed that it was 

ainful. I remember one day, I had asked my mom to stay home from school because I just couldn't get out of bed. I was wrapped up in blankets and she left. She said, okay, because it was the first time

she came back home and I was in the same spot she left me, she was 

. She and my step-grandmother were just kind of laughing

, “If you can't handle this, how are you going to handle childbirth?” And I remember getting so angry

that I started cursing and was upset. I just remember thinking, “I have to deal with this like every month for years on end.” It only got worse. I went to the doctors and got Tylenol with codeine because my pain was so bad. By my senior year, I had missed, I think, like, close to 30 or 40 days of school in that one year because my commute was over an hour on the train, and it was just too exhausting to get to school sometimes. It was normalized for me because every woman in my family had to deal with pain and the expectation was to 

, I was rushing home from student teaching because I was so exhausted. I collap

my painful period never registered to me as a reason why I was so exhausted. 

I didn’t know then but I was disassociating from reality in order to continue going through life “normally” without acknowledging my body’s need for rest while I was bleeding heavily and battling menstrual pain.

When I started going to work after college, I had at least four incidents at four different jobs where I bled through my clothes. When I spoke to my mom she goes “Girl, you know you have to carry your change of clothes!”

I was blaming myself for not being prepared for extreme pain and heavy bleeding because that was just normal to me. I live in New York City, and taking the train was so hard. And by the time I started working, I was sitting on the train for so long and then having to stand for so long

 it added stress to my pelvis and uterus that I simply accepted.

I just planned my life around my periods. 

f I had an important meeting coming up, I would just pray my period would start on the weekend, so at least the first two days 

be painful at home, and then I could focus on work. But hose are your two days to get a break from work, and I was over here praying that my most painful experience happened then, so that I wouldn't miss work.

By the time I was in my early twenties, I was constantly taking ibuprofen. It was a crutch that I needed to survive. My PMS had started to come three to four days before my period. So now it wasn't just the week of my period. Now it was three to four days before I'm gonna have mild cramping, I'm going to be exhausted, and have migraines.

I got married, and I moved out of New York. I thought that would help lessen the stress 

. My mom and other women liked reminding me if I couldn't handle my cramps, I wouldn't be able to handle childbirth. So I was excited to get pregnant to have a child, but secretly I also wanted to know how bad childbirth was. In my family that was also a badge of honor to have birth without any pain meds, and I wanted to know 

In my first trimester in pregnancy, I was spotting and 

, and I was like, “Are you shitting me? This is the time I'm supposed to get a break.” The pain was so bad that my midwife sent me to the ER. I didn't think about it then as intergenerational trauma because I didn't understand epigenetics and how we can pass on stress hormones in utero. But when I wa

s getting the ultrasound to determine the cause of the bleeding, the 

ultrasound tech told me, “Hey, I'm not allowed to do this usually for emergency ultrasounds, but I need you to see the baby so you calm down.” I'm like, “I am calm.” She zoomed in and I saw my child curled into a ball on the screen and that was something that resonated with me. That's when I first started getting an awareness of how much stress impacted my body. She said, “Yes, the baby can feel your anxiety.” So I made a commitment. I decided to go all natural, to do yoga and monitor my stress to calm my body.

My last trimester was so painful that I couldn't work. My midwife would send me to the ER and 

, “Oh, it's just Braxton Hicks,” the false contractions

time she was technically safe to get out I was ready to get her out

, “No. This has to happen now. She's healthy, she's big enough, I have to get her out.” So I did everything suggested: I ate spic

 acupressure and acupuncture. And within 

 day, I went into labor. I remember driving to the midwife's house and timing my contractions. I 

kay, great, they're coming every five minutes

f my period was like this, it'd be so much easier because I could time it, and I'd know when it was coming

 every month with my period was significantly more painful and draining. Labor was

When I gave birth, I didn't even consider an epidural. It literally felt like my period. I had a fourth degree tear. I felt the pain externally, it was a different kind of pain. But for me, I 

’s startling that I silently dealt with that level of torture every month like it was nothing, so much so no one really knew the severity or impact on my overall physical and mental health.

 Pregnancy was the hardest part for me, because it went on for so long. 

I couldn’t relate to the stories I saw in the media of women yelling for epidurals. 

, I was committed to the breastfeeding journey, it was great for 

I’d get a break from my periods. My entire life 

 around my period pain or anticipating it. And so while I was breastfeeding, it was amazing. The first year I didn't even have my period. My daughter slept so well because I co-slept and it just felt like heaven.

I had gained a lot of weight. I was like 200 pounds by the time I gave birth and I'm only five two. I felt so self-conscious about my weight, but other than that, I was 

Breastfeeding hurt too, but it didn't matter. I had her 

beautiful chunky cheeks and baby smell to keep me going. 

I was fine. I was safe. I felt great because I didn't have my period.

And then after the first year, a woman who I went to the birth class with told me she got her period and I was like, “all right, it's gonna come.” Cause she gave birth like a week or two after me. I think it was another three or four months and then my period came back but my pain wasn't that bad. At the time another family member came to live with

us, and I remember noticing when she had her period, she didn't have pain. It never occurred to me that 

 “This is amazing.” I was buying into all of the really stupid myths about period pain, that after you have the baby, maybe that will get rid of it. So I thought that maybe this was it, that I wouldn’t have period pain anymore.

And then October 31st, 2021, Halloween, my period pain came raging back after 

. I got my kid dressed and I was so excited but I was so exhausted. That's when I noticed the pain again. But I recognize now too, that I had been so used to pain

the warning signs had started months before but I just 

believe so badly that my painful periods weren’t coming back. 

the pain again, I had enough notes to look back at the past pattern of my menstrual cycle.

I knew that this time felt drastically different. 

I was like, “What is going on? I can't do this anymore.” Usually, I tough things out. But

, “I have to go to the doctor.” So I made an appointment.

The next week, I went to my primary care physician

, “This pain feels really different. It's on my right side.” And he checked me out and he goes, “I think you need to go to the ER. And I was like, I'm not going to the ER.” It was during COVID. I just wanted to go home to my baby. He 

think it's either appendicitis or endometriosis.” Prior to that, I hadn't ever heard of endometriosis. It terrified me, 

 “This is another thing to deal with, with my stupid periods.” I didn't want to keep dealing with this. And it was really heartbreaking. Looking back, I didn't realize how much I was putting on a brave face. So I remember he was like, Do you want me to call the ambulance or drive yourself? And I was like, “I'll just drive myself.” 

, why didn't you call the ambulance? He was very concerned. He was more concerned than I was, because I 

was more concerned about it costing too much money and not being perceived as hysterical than my own pain.

 to the ER and they ran a bunch of tests, they did an ultrasound,

 it was another cyst, and constipation. And I was like, “Why am I in the ER for this?” And I was angry because

hearing them say that, and the pain I was feeling, it didn't make any sense. I remember specifically telling the doctors

this pain felt like nothing ever felt before. I've felt constipation before. Every woman who has painful periods knows how to deal with that. I knew what it felt like.

From October all the way till June, for eight long months, I was in and out of the ER. I was in and out of doctors’ offices, doing research online, trying to figure out what 

 with me. I started to have pain after my period, then I started having pain a week before my period, then it turned into having pain all month long on the right side. I 

t to my family and friends compared to those of doctors.

This was the first time having to deal with managing this pain and then taking care of somebody else. Luckily we were blessed to work from home and I was able to be home that entire time, but I was just so exhausted. I kept working and trying to be normal and taking pain medication. Ibuprofen and acetaminophen were not doing anything anymore. But 

after I got a concussion from slamming my head into a pole at the park, I reached a breaking point.

 I started taking medical marijuana because it was legal in Illinois.

I knew from other members of my family, how much it could do to your brain and so I never wanted to use it regularly. I see now how desperate I was, and how I think the doctor took my pain more seriously because marijuana is not something that I wanted to use. W

Because of the possible hormonal impact, endometriosis became the primary diagnosis concern.

but my sleep was disrupted because I was in so much pain. Then I was up at 10 or 1

to be with my kid all day. It probably made my pain worse by staying up so late because I was not getting any of that restorative sleep. By May, I'd had enough. I was in so much pain, I started to think weird things. My head was pounding from the migraines 

I was in so much pain I had to keep going back to the ER. They kept telling me it's just constipation. By that time, I also had already had a colonoscopy. I had done multiple ultrasounds, and tho

usands of dollars on tests that turned out “normal”. 

Every time I was just dismissed. They pumped me with so much stool softener, laxatives, ibuprofen, acetaminophen, and then I tried all natural routes with probiotics, fish oil, multivitamins, even Chinese herbs from my acupuncturist. I had so much medication in my body on top of the marijuana.