Hi there, new to the forum but sadly not new to this journey.
It began back in 2015 when a regular smear showed up CIN I. Because I was on chemo and immunosuppressants for lupus), we did another smear in six months. CIN II. By this time I was in agony. I had been dealing with endo and adenomyosis for years, it went berserk. The next colposcopy showed CIN III.
Come Feb 2017 I had had 4 surgeries including cone biopsies, LLETZ etc followed by an emergency op because they had perforated my uterus with a Mirenaā¦ I had a radical hysterectomy. The pain was gone, as well as what was left of my mutilated cervix and my uterus. My first annual check up/colposcopy showed VAIN I. Last year it was borderline VAIN I/II. Now it is VAIN III.
3.5 yrs after the hysterectomy I went into menopause. I was 39.
I am having āexploratoryā surgery, where I can only assume that the oncological gynae will wear me for a hat to find out what the next steps are.
I am terrified that due to constantly having to be on immunosuppressive meds for the lupus, that my body will not shake it. There is so littler literature about it, and I really donāt have any I feel I can speak to. Hi, I have vaginal cancer is not the ice breaker I am looking for (and yes, I know VAIN isnāt cancer, but you get my gist).
Has anyone been on this path? Help? Advice? What is going to happen to me??
With love and thanks in advance,
Sofie
Hi Sofie
Just wanted to let you know your not alone.
Iāve had a radical hysterectomy for vain and vaginal cancer. I agree there is not a lot of information/support/research papers on the subject and I like to google even though everyone says donāt do it! Forewarned is forearmed in my book and I like to know what Iām up against. So having very little info is a problem for me too.
I have been on the same path but each journey is different, I had a biopsy under GA and mri to get my diagnosis.
It sounds like you have been through the wringer already, I hope all goes well with your surgery and I wish you all the very best
Jane
xx
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Hello Ladies
Iām sorry to hear about your situations and I agree it certainly does sound like youāve been through the wringer. I just wanted to say you may be able to find more people who have experience of VAIN and VIN on the Eve Appeal forum. They also have information and a support phone number. They are a charity specialising in support with all the gynae cancers, not just cervical cancer. I wish you both well and hope this helps. I can also recommend Jo"s helpline for support and information. A x
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Hi Jane,
Thank you for your reply and warm thoughts. I had the surgery last Tuesday, when they removed a 3.5cm x 3cm high grade lesion as well as taking some punch biopsies. The pathology results will return on Wednesday.
I lost some blood and the surgery kicked off a return of the old neuropathic pain, which was taken care of by the wonderful day nurses but the night nurse was a proper Nurse Ratchet who kept withholding pain relief, even though I was supposed to have Endone and Targin as required.
After the first night I complained to the anaesthetist the next morning and was told to call her at night if it happened again. Well, it happened again. Nurse Ratchet fought me for half an hour until I pulled the trump card out, and then gave me the meds that should have been given me 3 hours earlier.
Apologies for the vent. The oncologist/gynae told me that given my immunocompromised state it is unlikely that this will ever go away, a point that I will press him on when I see him on Wednesday but it was very discouraging.
I am a Londoner living in Sydney and we have just gone into a 2 week lockdown. It is all happening at once.
Thank you again <3
Hi Sofie
Iām sorry to hear you had a rough time in hospital. I think pain relief should be the number one priority when going through tests and treatment. I canāt understand anyone making anyone wait for pain relief. So glad your anaesthetist was on the ball.
I think we all need to remember that nurses canāt prescribed medication so if you are in pain ask to talk to your doctor or surgeon who can give you something stronger. I donāt like to be a bother so keep quiet, never a good move. But luckily when I had my RH the pain management person came to talk to me as I was so dizzy and sick. Speaking up is so important, really difficult to do when your feeling so vulnerable. Not getting help when you do speak up is utterly unforgivable.
Iām keeping my fingers crossed for your results on Wednesday and hope they bring good news.
Doctors have been known to be wrong!!! I do hope they are wrong and itās gone for good.
I said to my Dr that Iām weak not strong like other women, he corrected me and said , all women are strong. I think heās right we keep going .
I wish you good luck with your lockdown, we might be coming out of ours on July 19thā¦lolā¦if ever!!!
My treatment started at the beginning of covid, Iāve seen my consultants face once!! Unlike others who have only seen sets of eyes ā¦lol
Wishing you health and happiness
Jane xx
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Hi Jane,
It took almost two weeks for the pain to die down and you are absolutely right, speaking up is important but it felt like such a fight. One that no one should have to, particularly when so vulnerable. I have written to the hospital to let them know about my experience, perhaps that will help others in the future.
The results came in and it was all high grade VAIN III. The gynae expressed surprise that the punch biopsies were high grade too.
The large section came back with clear margins but not the punch biopsies. This is so triggering for me because, and here I apologise for bleating on like a broken record, but this is almost exactly what happened the last time round wherein the margins would come back āclearā only for me to go back for my 6 week check up to find that the CIN had not only returned but was a higher grade and marching upwards through my cervix.
My great fear now is that I donāt have a cervix so where are these lesions going to show up again and where, are they going to grow or progress to being actual cancer. This is exacerbated by my being immunocompromised to manage the Lupus so my body cannot fight this on itās own.
And now the Delta variant is running rampant in Sydney so it feels like I am sitting with a ball of anxiety.
Thank you all for listening.
Sofie
xxx
Hi Sofie
Well done for speaking up, it is the only way services improve, quite often like you say it doesnāt help us but the women that come after. I must try take a leaf out of your book and report poor behaviour. Making a positive out of a bad situation 
I feel having a second major health issue to manage doesnāt make it twice as bad but ten times as bad. I often worry about how my health issues impact on each other
I was just wondering where you are now, will it be more testing in the future. And how you feel about that
For me, I just wanted it gone so I can carry on with my life, I keep having to tell myself, life is today. I have just had a colostomy before radiotherapy, so pretty mind blowing as you can imagine. What helps me is a beautiful sunny day, a lovely conversation with a stranger, kind words, at the moment itās what life is all about, connections.
I do hope your overall health improves and always be kind to yourself
Wishing you all the very best
Janexx
