Who does a biopsy and when?

Posted , 3 users are following.

Hi,

I am seeing my urogynocologist this week to see what's going on with the ferocious itch and other LS symptoms I've been dealing with for the past few months. If I get a diagnosis is my provider likely to perform a biopsy right then? Am I likely to be in pain for some time?

Thanks!

0 likes, 3 replies

3 Replies

  • Posted

    I saw a gynecologist when I was diagnosed with LS. The doctor did a biopsy that day in her office. The biopsy was painful when performed. It was quickly done. The only thing I can compare it to is like a paper punch. For me the pain did not last long.

  • Edited

    If you're as unlucky as I have been, the pain will never end. It's over 6 years on for me. Yet again today I have heard (informally) from a private doctor's office in London that he sees many female LS patients with punch biopsies that remain problematic. I recently heard exactly the same from another private doctor, although most NHS docs are more reticent. I am male and I was browbeaten into a scalpel biopsy for LS that has pretty much wrecked my life, and made relationships very problematic and physically painful. I was enjoying a fairly normal sex life before the biopsy, albeit suffering with LS; any sort of normality is now no longer possible. I do hold myself responsible for being an absolute fool in submitting myself to this brutal process of biopsy. Only to be told over the intervening months and years by several senior specialists that diagnosis for LS can be performed visually alone. This should typically be done with the aid of a hand lens; no such lens was used before I was biopsied. When they did the histology (i.e. stuck my destroyed skin under the microscope) it did rule out squamous cell carcinoma (SCC), but as to a diagnosis of LS, it was no more definitive than visual examination ... so was utterly pointless, as SCC will normally be diagnosable visually too. If something more than a conventional visual diagnosis is absolutely necessary, please get yourself to a facility that offers confocal microscopy. Effectively, this process enables doctors to perform a non-invasive "biopsy" in situ, by light microscopy of your living, intact skin. It'll find SCC and enable diagnosis of LS. Don't end up like me, with a wound that never heals, never stops hurting, and is persistently inflamed. Yes, this biopsy was performed by a (very arrogant and condescending) "dermatologist". I believe he has put me at greater risk of SCC, because of the persistent inflammation, which before the biopsy was scary enough, but intermittent. Diagnosis might be more difficult in women, and I am not for a second advising anyone to put off diagnosis, but don't be fooled into thinking your experience of biopsy and its aftermath will be anything less than awful. If visual diagnosis is deemed insufficient, ask for confocal microscopy, which is available in some NHS hospitals, to my understanding. Otherwise, just pay for it privately, if you can. A couple of hundred quid is worth paying to avert a lifetime of pain. Get diagnosed safely and sanely. Biopsy is likely to aggravate this awful disease, even in the best case. If your doc tells you that's rubbish, your doc is arrogant and wrong; please get a second opinion. Don't end up like me. I hope this doesn't get taken down, because I'm just telling the truth.

    • Posted

      Update: On Thursday, after I posted my reply to the OP, I was finally diagnosed with nerve damage, resulting from the biopsy performed on me 6 years and 7 months ago. This diagnosis was made at the hospital where the biopsy was originally taken. This physical damage is layered on top of a disease that was already causing considerable discomfort, so if you have LS already, imagine it four, five, or even ten times worse. Plus the fear. I would do anything in my power to avoid having another biopsy. In general, the doctors do not understand how much extra damage, inflammation and pain they can cause with a hamfisted surgical intervention (which is what a biopsy is). Beware.

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