Lichen Sclerosus & Vulval cancer UK Awareness
  • Home Page
    • The Vulva
  • Symptoms
  • Overview of Lichen Sclerosus
  • Lichen Sclerosus In Men & Penile cancer
  • Lichen Sclerosus in Children
  • Diagnosis
  • Treatments
    • Tips and partner support advice >
      • Vulval Cancer & Pagets Disease
  • Vulval Biopsy results explained
  • Vulval Lichen Planus/Erosive Lichen Planus
  • What can be expected after Vulva cancer treatment
    • HPV >
      • Checklists
  • Eve Appeal's Research Fund and training program for medical professionals
  • Links to Charities
  • 5 Gynaecological cancers
  • British Society for the study of Vulval Disease (BSSVD)
  • Guest Blogs
  • Articles on Lichen Sclerosus and Vulval Cancer
  • Borax And Lichen Sclerosus
  • Leaflets, posters and badges
  • Awareness Images & Video's
  • #Knowyourvulva Campaigns
  • Campaigns
  • Website links
  • Literature
  • Research opportunities
  • Home Page
    • The Vulva
  • Symptoms
  • Overview of Lichen Sclerosus
  • Lichen Sclerosus In Men & Penile cancer
  • Lichen Sclerosus in Children
  • Diagnosis
  • Treatments
    • Tips and partner support advice >
      • Vulval Cancer & Pagets Disease
  • Vulval Biopsy results explained
  • Vulval Lichen Planus/Erosive Lichen Planus
  • What can be expected after Vulva cancer treatment
    • HPV >
      • Checklists
  • Eve Appeal's Research Fund and training program for medical professionals
  • Links to Charities
  • 5 Gynaecological cancers
  • British Society for the study of Vulval Disease (BSSVD)
  • Guest Blogs
  • Articles on Lichen Sclerosus and Vulval Cancer
  • Borax And Lichen Sclerosus
  • Leaflets, posters and badges
  • Awareness Images & Video's
  • #Knowyourvulva Campaigns
  • Campaigns
  • Website links
  • Literature
  • Research opportunities

Guest Blogs

It has taken me 3 years to come out about my diagnosis by Caroline Kohl

13/8/2020

13 Comments

 
Picture
It has taken me three years to ‘come out’ about my vulval cancer diagnosis. I was 29 when I was diagnosed with a rare form of vulval cancer, mucosal melanoma, and in one year I had five operations to try and remove the primary tumour with clear margins. I had just started working at my dream job, and nobody – least of all me – expected that I would need time off work due to a shock cancer diagnosis. And what could I tell all my new colleagues?
I told a few people that I had skin cancer – specifically, melanoma – and I got some sympathy, but not a lot of understanding. A couple of people told me that as a redhead, I should have expected a melanoma diagnosis (though mucosal melanoma is unrelated to sun exposure). At the end of business meetings, someone would inevitably take me to one side and show me one of their moles. Did I think it looked suspicious? Did it look like mine?
None of these moles resembled what I’d had: a 4mm nodular growth that sat uncomfortably close to my clitoris.
Outside work, I tried a different tack. I told friends that I had a ‘gynae’ cancer, and I left the rest to their imaginations. Some found a new way to blame me. Had I developed this disease because I had an STI? I heard more than a few jokes about my sex life. I tried to take the high road.
Unfortunately, multiple wide local excisions could not ‘cure’ the disease. The post-surgery pathology results reported amelanotic (colourless, and invisible to the naked eye) melanoma that proved too challenging to detect and remove. I moved to a ‘watch and wait’ protocol, with regular gynaecology and dermatology visits, as well as routine body and brain scans managed by a melanoma oncologist.
I enjoyed a few months of clear scans before the mucosal melanoma appeared in one of my lungs. The disease had progressed from stage II to stage IV. I had multiple tumours and this meant that I couldn’t have surgery to remove them. Instead, I started immunotherapy treatment (ipilimumab and nivolumab) – the standard treatment for metastatic melanoma. This time I only told a handful of people. I kept working during treatment and tried to keep my life as normal as possible. Immunotherapy didn’t give me any visible side effects so I was able to stay under the radar – but of course this meant that I didn’t get much support.
Immunotherapy didn’t work. Melanoma doesn’t routinely respond to chemotherapy, so my next step was a targeted treatment on a clinical trial. There was no hope of curing the disease, but the trial drug was supposed to buy me six months of stability. I got married, went on a ridiculous number of holidays, and wrote my will. But the targeted treatment worked far better than anyone had anticipated – and as I write this, I’ve been taking the medication for 14 months and have had No Evidence of Disease (NED) for six months. For someone with incurable cancer, NED is as good as it gets.
Nobody knows how long the melanoma will continue to respond to treatment. I’ve been wary about talking openly about my disease because of its intimate nature, and more recently I’ve struggled with the irrational fear that by sharing my lucky response to treatment I’ll somehow ‘jinx’ its future success. Starting my blog felt like a huge decision.
I’m fortunate to have had access to phenomenal psychological support over the last three years, so I’ve never felt stuck for someone to talk to. As well as having a fantastic oncologist and trials nurse who always take the time to listen to my concerns, I have benefited from free therapy sessions at my local Maggie’s Centre. I can’t speak highly enough of therapy! It’s brilliant to have a non-judgemental, non-medical, sympathetic ear – and my therapist has helped me make sense of my diagnosis and my reactions to it.
One of the topics I have yet to cover on my own blog is sex. Sex wasn’t really discussed during my gynae oncology consultations, although I had multiple wide local excisions rather than an immediate vulvectomy because my surgeon was working hard to maintain my sexual function. They hadn’t expected me to need so many repeat excisions, and my final operation resulted in a partial vulvectomy. Although my surgeon told me that my ‘vulval architecture’ had been preserved, i.e. all the nerve endings were still there, I no longer recognized my own body. I was struggling to keep up with all the physiological changes that had taken place in a relatively short space of time.
Shortly after moving to ‘watch and wait’ (before I progressed to stage IV), I went on a retreat with the young adult cancer charity Shine Cancer Support. The long weekend (known as the ‘Great Escape’) involved a few discussions about sex after cancer, and I heard about psychosexual medicine for the first time. Why had nobody mentioned this to me before? It seemed as if I would almost certainly benefit from psychosexual therapy, but I was warned that there were relatively few practitioners out there – and if I wanted long-term support, I would probably have to pay.
I wasn’t sure that I could afford to pay privately for this type of therapy – but I decided to explore my options and see if I had enough savings to fund a course of treatment. I didn’t know about the College of Sexual and Relationship Therapists at the time, but I’d seen a lot of adverts at bus stops in my local area that offered support to survivors of female genital mutilation (FGM). I emailed the FGM clinic to ask if they could recommend a therapist for me to contact.
The FGM clinic sent my email straight to a psychosexual therapist in the NHS – as it turned out, the only person practising this specialty in my area – and two weeks later I started treatment via my local Sexual Health Service. I didn’t have to pay.
I had multiple appointments over a period of two years, and as part of my therapy I was also referred to a trauma specialist who helped me to manage the PTSD symptoms I’d developed as a result of cancer treatment. My husband attended many sessions with me and we’ve been able to work on our relationship and explore the impact of my diagnosis together. Psychosexual therapy returned a sense of normalcy to our lives, and later gave me the confidence to start sharing more of my experiences with others.
I found it very challenging to speak up about my diagnosis and the impact it has had on my mental health, but doing so has paid dividends.

13 Comments
Debbie Arnold
20/12/2024 10:30:58

I am out here to speed this good news to the entire world on how I got help from Dr Kachi a great lottery spell caster that will help you cast a lottery spell and give you the rightful numbers to win the lottery, I didn't believe lottery spell at first but as life got harder i decided to give a try, I spend so much money on tickets just to make sure I win. until the day I met Dr KACHI online, which so many people have talked good about, that he is very great when it comes to casting lottery spell, he told me the necessary things to do and behold it was like a magic, i won $20 Million Dollars Florida Powerball Double Play with the numbers Dr Kachi gave to me. his a really trustful person worthy and reliable, i am sharing this to you who have been finding it so hard to win the lottery, Thanks you Dr. Kachi who helped me contact email [email protected] OR Text Number and Call: +1 (209) 893-8075 Visit his Website: https://drkachispellcaster.wixsite.com/my-site

Reply
Manuel Franco
17/4/2025 04:03:28

I promised Great Dr. Odunga to post this testimony and I really want to say "Thank You" to everyone who supported me through the years. My name is Manuel Franco, New Berlin, Wisconsin. My story of how I won the Powerball lottery of $768.4M is a bit of a tale. I was feeling very lucky that day because I had contacted Great Odunga to help me with the winning Powerball numbers. I really had that great great feeling that I looked at the camera wanting to wink at it. I only did a tiny part of it when he told me he would give me the numbers and trusted him. He gave me the numbers after I played a couple other tickets along with it for $10. I checked my ticket after the winnings came online and saw the numbers were correct including the Power play. I screamed for about 10 minutes because it felt like a dream coming into reality. I had won $768.4M. Thank you Great Odunga. Well, his emails are [email protected] and [email protected] You can also call or Whats-app him at +2348167159012 so you guys can contact him

Reply
josh mavis
7/1/2025 15:28:51


I was really stressed by Erectile dysfunction issues and had consulted Dr Moses Buba. He gave us a thorough consultation and the medicines were equally effective. In a couple of weeks there was big improvement in me and we are very pleased with the progress. We cannot thank Dr Moses Buba enough. Highly recommended. Email [email protected] WhatsApp +2349060529305. you can also reach on his Facebook page ; https://www.facebook.com/profile.php?id=61559577240930 / website page https://bubaherbalmiraclem.wixsite.com/website

Reply
Christine Davis
18/1/2025 08:09:09

Am so happy that just 3 days after taking DR ODUNGA Herbal treatments my herpes was cured permanently. DR ODUNGA also have cure to #HIV #Diabetes #Lupus #Tinnitus #Fibroid #Cancer #Hepatitis B, #Syphilis #Infertility etc ... If you have this ailment or whatsoever you might be suffering from you should contact him at his EMAIL: [email protected] OR VIA Whats App +2348167159012

Reply
Benjamin Coleman
10/3/2025 12:36:20

I struggled with Herpes since 2015, feeling trapped in a cycle of antiviral medications that only offered temporary relief. My life changed when I stumbled upon a blog where someone shared their incredible journey to recovery with **Dr. Utu’s Herbal Cure**. Intrigued and hopeful, I reached out to him. To my amazement, after following his natural treatment plan, I’ve been free from the virus for over a year now! Dr. Utu is truly a miracle worker. If you’re tired of just managing symptoms and long for real healing, I wholeheartedly recommend reaching out to his direct email [email protected]. Don’t forget to mention that Benjy referred you. Thank you, Dr. Utu! 🌿💖

Reply
Lilian Jose
21/3/2025 17:24:55

I want to use this opportunity to testify of the marvelous work of Dr. Odunga and how he has helped me in curing my sickness and bringing happiness into my life. I can really vouch for Dr. Odunga in herbal treatment. I was suffering from Cervical Cancer and infected with HPV 16. I used to have unusual vaginal bleeding and painful urination. There was nothing I could do until a childhood friend introduced me to Dr. Odunga Remedies. I spoke with him and ordered his recommended medication which was delivered to me through DHL. Immediately I began using herbal medicine, and within a week I couldn't feel any pain. It took me 2 weeks to finish the medicine and afterwards I was completely cured. I highly recommend that you order your herbal medication through Chief Dr. Odunga. Contact his email [email protected] OR What'sApp/Call him at +2348167159012

He is 100% reliable to help you too.

Reply
Holt Deere
17/4/2025 17:34:14

CBEX SCAM


I was recently scammed out of $325,600 by a fraudulent CBEX investment scheme.

Which added significant stress to my already difficult health issues. as I was also facing cancer surgery expenses. Desperate to recover my funds. I spent hours researching and consulting other victims. which led me to discover the excellent reputation of TROJANHACK CYBER SECURITY SERVICE.

I came across a Google post It was only after spending many hours researching and asking other victims for advice that I discovered Trojanhack cyber security service’s stellar reputation. I decided to contact them because of their successful recovery record and encouraging client testimonials. I had no idea that this would be the pivotal moment in my fight against CBEX cryptocurrency theft.

Thanks to their expert team. I was able to recover my lost Funds back. The process was intricate, but their commitment to utilizing the latest technology ensured a successful outcome. I highly recommend their services to anyone who has fallen victim to CBEX fraud.

For assistance, contact them via email: [email protected]
Telegram: TrojanhackQservice

Reply
Emma Van Der Wal
24/4/2025 22:09:02

My life was nearly unbearable due to a herpes virus infection. I experienced frequent and painful outbreaks on my penis, which were incredibly difficult to manage. The blisters and sores would often appear whenever I was feeling ill, making an already tough situation even worse. I became extremely frustrated and exhausted from the cycle of pain and discomfort. I tried various medications, including Valtrex and acyclovir, hoping they would alleviate my symptoms and possibly lead to a cure. However, my doctor informed me that there was no permanent cure for the virus, which left me feeling hopeless and desperate for a solution.
I couldn't help but believe that there had to be a remedy out there. I was particularly intrigued by natural remedies, as I am a big supporter of Dr. Sebi and his holistic approach to health. It was during this search for answers that someone recommended Dr. Utu’s Herbal Cure. This person had previously used the treatment and promised me that I would be completely cured within four weeks. Skeptical yet hopeful, I decided to reach out and order Dr. Utu’s herbal cure.
To my amazement, after completing the treatment, I found that I was completely cured of the virus. This was a life-changing experience for me. I felt like I had regained control over my life and my health. I can confidently say that I no longer suffer from the painful outbreaks that once dominated my existence. You deserve to live a life free from the burden of this virus, If you're struggling with herpes, don't let anyone mislead you anyone can contact Dr. Utu at [email protected]

Reply
susan Shaw
1/5/2025 01:40:20

There is no other medication that can cure herpes and other STDs, or STIs, permanently, I have come to find out that herbal medication is the only form of medication that has cured herpes successfully, I was once tested positive of herpes but herbal medicine I got from Dr Ofua Ofure help me to get rid of herpes totally, now am free from herpes virus permanently. contact Dr ofua Ofure [email protected] to know more about his herbal healing products and get cured just i have been cured. WhatsApp/call +234-705-595-5394 website: https://neal-hypooght-scealy.yolasite.com

Reply
Sharon Wesley
8/5/2025 01:07:23

Do you need assistance recovering cryptocurrency that has been lost to scammers, recovering lost cryptocurrency wallets, or reporting a Bitcoin scammer to recover cryptocurrency? The only viable solution is to work with a reputable Wizard James Recovery expert. a specialist with Wizard James Recovery to retrieve money that has been stolen from fraudsters. After losing $170,000 to a fraudulent online investment firm, I had made numerous attempts to get my money back. The majority of the recovery firms I looked at ultimately defrauded me of additional money. My former neighbor told me about Wizard James Recovery, so I contacted the Expert. The Expert was able to retrieve my money when I sent him the necessary documents. Contact email [email protected]

Reply
Wendy Gunn
15/5/2025 13:18:57

LORD MEDUZA IS THE BEST SPELL CASTER ONLINE

It's an honor to share my testimony with the world. You merit all the accolades that mention you. Lord Meduza has been a gift to me since our meeting online. He is the only one that knows everything about creating spells. I adore him immensely for his kindness, compassion, integrity, and the support he offers to everyone who interacts with him. Without Lord Meduza, I wouldn’t have survived this difficult situation. His magic turned me into a Lottery winner of £177 Million Pounds, transforming my entire life into something beautiful and extraordinary. The numbers he provided for the lottery were transformative, elevating me from grass to grace, and I want to express my eternal gratitude to him. Thank you, sir, for being a source of help to those in need. Anyone who reads this article and requires assistance can reach him through his Email: [email protected] or WhatsApp +18079072687 as he is unmatched in crafting spells.

Reply
Louisa Gagne
16/5/2025 03:56:30

It is really important to have a trustworthy hacker. I just had the idea to post this here in order to assist others who might require this kind of assistance! They literally saved my life; at the very least, I owe them advertising and notoriety. I recommend Wizard James Recovery, a hacking company that I trust for personal and private hacking, because every project I handed them turned out well. My credit card debts and personal credit loans were erased since I was unable to stick to the debt repayment schedule that the scammers had put me in, and Wizard James Recovery hacking service assisted me in recovering my lost money and Bitcoin from scammers. Contact them now at, [email protected] WhatsApp: + 4 4 7 4 1 8 3 6 7 2 0 4

Reply
Kevin Patmore
29/5/2025 22:50:09

Good day everyone, some statements people make may appear unbelievable, yet they reflect their truth due to their personal experiences. I'm a truck driver and I enjoy playing the lottery, but it's been 8 years without winning anything significant. I became upset over this and chose to seek help online from anyone skilled in using spells to win the lottery since my grandma had faith in spells and a story about Lord Meduza spells drew my interest. I obtained his contact information, and we discussed all aspects of how he could assist me. In less than 72 hours, Lord Meduza provided me with the lottery numbers I required after he completed the spell for me. I purchased my ticket online, followed the guidance of Lord Meduza, and now my life is fortunate because I won a $42.5 million Jackpot in the lottery I participated in. I’m thankful to Lord Meduza because he truly keeps his promises and I will donate $1 million to the orphanage homes in my city.

Email: [email protected] or WhatsApp +18079072687.

Reply



Leave a Reply.

    Author

    Write something about yourself. No need to be fancy, just an overview.

    Archives

    August 2023
    August 2022
    April 2021
    November 2020
    September 2020
    August 2020
    February 2020
    January 2020
    December 2019
    November 2019
    October 2019
    September 2019
    August 2019
    December 2018
    November 2018
    October 2018
    September 2018
    August 2018

    Categories

    All

    RSS Feed

Powered by Create your own unique website with customizable templates.