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Re: CLITORIS VULVA AND LYMPH GLANDS REMOVED DUE TO CANCER
From: anon (anonymous@obgyn.net)
Sat, 2 Sep 2000 22:24:56 -0500 (CDT)
Hi,
I really appreciate your advice.
I also offer my sympathies for experiencing something so horrible.
Unlike you, and the other woman who started this thread, I have never
had any kind of irritation, just "brown" spots. And I find it extremely
frustrating that I can't find any information regarding HPV/VIN. You
can find the most indepth material regarding CIN and warts, but VIN?,
forget it!!!!! ARRGGGGG! From what I HAVE learned, there is a
distinction between the women, like yourself, who complain of
irritation, pain (no HPV)for years and those with HPV seem to have a
slower more subtle, sometimes regressing "lesion".......I'm being a
little vague here and will probably get bashed if I misinterpreted some
of this incorrectly. :)
I have contacted a GYN though and hopefully will get it done and over
with soon.
Good luck and thank you..............
At Fri, 1 Sep 2000, anonymous@obgyn.net wrote:
>
>Anon....for your own piece of mind I would do whatever needed to be done
>to get a diagnosis.
>
>Two years ago I had a partial vulvectomy for VIN III (ouch). I had been
>complaining about the itching for NINE years...the last general
>practitioner I saw (female) wrote me a prescription for an ointment with
>29 refills!!!! I guess she was tired of hearing me complain :(.
>
>I finally made my way back to the ob-gyn I was seeing before my daughter
>was born. I knew it was not good when the first words out of his mouth
>were "Oh God."
>
>Yes, biopsies are painful...but it could be something that can be
>cleared up now. Having had both biopsies and surgery...(and not meaning
>to scare you), I can tell you that the pain only increases if you let it
>go into something that needs surgery.
>
>At Sun, 20 Aug 2000, William F. von Almen, II, MD, FACOG wrote:
>>
>>At Sun, 20 Aug 2000, anon wrote:
>>>
>>>After reading her post I have huge knots in my stomach. I have also
>>>posted on this board previously about some abnormal discoloration on the
>>>inner vulva. My GP never commented on it during exams and when I
>>>finally asked HIM, he said it was probably nothing but he would send me
>>>to a skin specialist. The specialist examined me, said it was probably
>>>nothing but said we could biopsy one specific spot just to make sure.
>>>Coincidentally, around this time, I was frozen down there to have a cyst
>>>removed. Whoever says a local feels like a bee sting is LYING. If I
>>>had to rate some of my most painful experiences, that local gets slot
>>>number two. Needless to say I chickened out of the biopsy. Well, the
>>>discoloration has slowly increased over the past five years and in
>>>between this time I have also asked an obgyn about it only to be told
>>>that I was probably BORN this way, when I know for a FACT that I was
>>>not. Totally given the brush off...
>>>So, point number one:
>>>Why am I being sent to a skin specialist for something that sounds like
>>>an obgyn problem, probably related to HPV. (I had cryotherapy for
>>>cervical dysplasia one year after the discoloration started, with no
>>>recurrence for 5 plus years.)
>>>2. Why does it appear that people involved in healthcare are so obtuse
>>>when it come to a patient's comfort. I don't mean this as a personal
>>>attack, just one that comes from my own experiences. What harm would
>>>there be in conducting an exam initially with a colposcope? If something
>>>abnormal is detected then the patient could mercifully be knocked out
>>>for whatever would ensue, could they not?
>>>I realise that this is quite lengthy, but the thought of having my body
>>>mutilated is not very appealing, in addition to dealing with doctors
>>>that just DO NOT listen.
>>>Thank you.....
>>>
>>>At Sun, 20 Aug 2000, William F. von Almen, II, MD, FACOG wrote:
>>>>
>>>>At Sun, 20 Aug 2000, anon. wrote:
>>>>>
>>>>>Wow, my heart goes out to you.
>>>>>I hope some of the other doctors on this forum express their opinion on
>>>>>this issue. I have scoured the internet for information on VIN.
>>>>>
>>>>>At Sat, 19 Aug 2000, Harvey S. Marchbein, M.D. wrote:
>>>>>>
>>>>>>YOU are very brave and it is so unfortunate that you went through such a
>>>>>>difficult time.
>>>>>>
>>>>>>Glad you found us. I never understand when people in pain, whether
>>>>>>physical or psychological, benign or malignant don't get compassion from
>>>>>>the health care providers.
>>>>>>
>>>>>>If your site "members" need a place for info, we're here for them as
>>>>>>well.
>>>>>>
>>>>>>HSM
>>>>>>
>>>>>>At Sat, 19 Aug 2000, kath wrote:
>>>>>>>
>>>>>>>I have had the above operation after I went to 2 gps and 2 gyns with a
>>>>>>>lump in my vulva and being told it was common to have lumps in the
>>>>>>>vulva. 18 months later I asked for it to be removed. Turns out it was
>>>>>>>cancer.
>>>>>>>
>>>>>>>After the operation I literally felt dumped. Where was the support for
>>>>>>>me with a gyn operation the same as the breast cancer women have.
>>>>>>>Nothing was there.
>>>>>>>
>>>>>>>Why did this happen to me and why do people turn their back on me when I
>>>>>>>speak about this issue.
>>>>>>>
>>>>>>>I only speak out so that I can save at least one other woman from this
>>>>>>>devistation.
>>>>>>>
>>>>>>>I have a support group called GAIN Gyn Awareness Information Network so
>>>>>>>that we can spead the word about the wart virus and its risk factor to
>>>>>>>cervical AND vulval cancers.
>>>>>>>
>>>>>>>I dont seem to get any feedback from medical people, like as if I need
>>>>>>>counselling or a tablet to calm me down. I am in perfect control and am
>>>>>>>appauled that this can happen to women and WE know very little about gyn
>>>>>>>cancers or pre cancers.
>>>>>>>
>>>>>>>We have women in our group who are not in the stats of cancer however
>>>>>>>they suffer in silence with pre cancers often having some of their
>>>>>>>sexual organs be it vulva or vagina cut out.
>>>>>>>
>>>>>>>This is deplorable that NO ONE seems to be taking any notice about these
>>>>>>>issues. Surely there must be a doctor out there that realises what I am
>>>>>>>saying and trying to do. We need to work together WOMEN and DOCTORS to
>>>>>>>face this issue head on and put the cards on the table.
>>>>>>>
>>>>>>>Is anyone there that may help. I will not go away until someone
>>>>>>>recognises what I am trying to achieve.
>>>>>>>
>>>>>>>Please wont someone hear.
>>>>>>>
>>>>>>>--
>>>>>>>Kath
>>>>>>>GAIN
>>>>>>>Women have a lot to GAIN with more knowledge of gyn issues.
>>>>>>>
>>>>>>--
>>>>>>Harvey S. Marchbein, M.D. FACOG, FACS
>>>>>>Great Neck, New York
>>>>>>
>>>>>>**Note: Opinions expressed here are for educational purposes only
>>>>>>and, as such, do not constitute a physician-patient relationship.
>>>>>>This information is not intended to supplant the need for you to
>>>>>>consult with your physician prior to choosing therapeutic options
>>>>>>and/or interventions.
>>>>>>
>>>>>>**Private emails cannot be entertained due to time constraints,
>>>>>>consequently no private emails will receive a response.
>>>>>>
>>>>>>**Thank you for your understanding ;-)
>>>>>>
>>>>>>Please be aware that all e-mail on this forum is archived and can be viewed at
>>>>>>http://forums.obgyn.net/womens-health,
>>>>>>http://forums.obgyn.net/pregnancy-birth or
>>>>>>http://forums.obgyn.net/young-women
>>>>>>and is accessible to anybody on the
>>>>>>internet including internet search engines. This should be taken into
>>>>>>consideration before sending postings of a personal or confidential nature.
>>>>>>
>>>>Anon
>>>>
>>>>A truly difficult issue for healthcare providers and patients. VIN and
>>>>VAIN can be very cryptic diseases, not like cervical neoplasia (thanks
>>>>to paps). We can all use all the support we can get here, and I support
>>>>Dr. Marchbein in his comments.
>>>>
>>>>--
>>>>William F. von Almen, II, MD, FACOG
>>>>Editorial Advisor-Pregnancy and Birth
>>>>Private Practice
>>>>New Orleans, La.
>>>>
>>>>*Please understand I can not respond to private emails.
>>>>
>>>>*These comments are for educational purposes only. They are
>>>>not meant to take the place of an examination by a qualified
>>>>health care provider. They are not intended to be the start
>>>>of a physician-patient relationship.
>>>>
>>Anon
>>
>>I agree that sometimes you need to hit us over the head with a tree
>>trunk to get our attention.
>>By the same token, it is just not feasible to examine every patient with
>>a colposcope! Better for you to patiently discuss this with your MD,
>>even if it means another visit to him to do an extra procedure. My 2
>>cents worth.
>>
>>--
>>William F. von Almen, II, MD, FACOG
>>Editorial Advisor-Pregnancy and Birth
>>Private Practice
>>New Orleans, La.
>>
>>*Please understand I can not respond to private emails.
>>
>>*These comments are for educational purposes only. They are
>>not meant to take the place of an examination by a qualified
>>health care provider. They are not intended to be the start
>>of a physician-patient relationship.
>>
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