Hello. I am new to the group. I found your group when I was searcing for what is going on with me. I have had LS for about 6 years. All had been fine until the last few weeks. I have had a major flare up and now have a painful, tender, mobile, lump near my clitoris that seems to have stumped my doctor. It is not a cyst or lipoma. They seem to think it is an abcess, but hasn't quite presented itself as such on an ultrasound. I saw someone posted something about a pseudocystic smegma abcess on this board. I watched the lecture by Dr. Goldstein linked to on this discussion board and he mentioned it too; however, he didn't say too much about this. Can someone with experience with this tell me how it presented and how it was resolved? There just isn't much info out there about this problem. I appreciate any advice. Thank you so much!!!!
That was me! I'll tell you the whole truth about how I feel it arose. My LS was flared up quite badly (I wasn't diagnosed, I had thought all this stuff was an aspect of psoriasis for 40 years). My inner labia were in the final stage of zipping closed over my clitoris. There grew a bit of a lump and without knowing the (very accurate) name of this problem, I gathered that smegma was collecting in this enclosure, so I was (foolishly) squeezing it out on a regualr basis, through the pinhole opening that remained. I figured because there was still an opening, there was a risk of infection. Finally, despite my attentions, one day it swelled up and the hole was shut. I put up with a painful spot for a day or two, but then it really swelled up and hurt all across my groin. Did I go to the doctor then? Nope. I squeesed the abscess and a scary amount of pus came out. Then I took myself to emergency, knowing that I would definitely need antibiotics ASAP. That was when the emergency doctor looked at my vulva and said, "You have quite a bit of atrophy there" and sent me to the gynaecologist who instantly diagnosed LS.
If I had it to do over, I think it would have been safer to have the doctor lance the abscess. Dr. Goldstein didn't say much about it, but he did indicate it's a thing that happens. I believe my experience does a good job of explaining why it happens.
The upshot is, yours is likely to get worse before it gets better. Do go to the doctor again if it swells up more.
I'm so glad you posed this question!
Thank you for your response! I am so hoping this is what I have. The ultrasound looked like an abscess, but the radiologist said he couldn't rule out a neoplasm which I am assuming would mean cancer! It seems like the abscess is responding to antibiotics, but from the few articles I could find on this condition, it seems that having it excised is the only cure. Did you have yours excised, lanced, or just used antibiotics?
I had never heard of Dr. Goldstein. So glad I stumbled upon this board and his name. I have not been doing a good job of keeping my LS in check and it seems that is why I have this problem and could have many more problems in the future. His info about the cancer has scared me. When I was diagnosed my doctor did not mention a thing about cancer or increased risk!
Thank you so much. This info has put my mind at ease a bit. The doctor said where I have my abscess is a strange place to have one, but I bet he hasn't worked with too many women that have LS. From what I have read about LS and other boards, and what DR. Goldstein said, it would seem to make sense that I have this smegmatic pseudocyst abcess.
We won't get cancer. No worries at all. As long as you get checked out every year, there are plenty of early warning signs. Constant open wounds on untreated vulva are what cause trouble.
I popped my abscess, bad thing to do, but same effect as lancing. I'm not any kind of medical person, so you need to trust the doctor as far as whether the antibiotics will kill the infection in there.
Thank you. I will find out Wednesday if they think the antibiotics worked. It seems as if they are working. The pain has subsided significantly, and I am only on day 3 of the antibiotics ( have to take it 7 days) . I will let the group know how this goes. Hopefully, I never get this again. I had never heard of smegma pseudocystic abscess, and I hope never have a thing like this again!
It sounds like the drugs are doing the trick. My theory is that this happens as the labia fuse while there's still a bit of an opening left so bacteria can get some oxygen. Once fusing is complete, what could get under there? It's kind of like once your ear piercings grow shut, there's no more guck...
Not that we're happy to have this fusing happen, but this almost-done situation is rife with trouble, it seems.
On the antibiotics thread I invited Michaela to see this discussion and mentioned that I heard this condition named by Dr. Goldstein, so here's the link to his lecture, where he mentions this near the beginning.
https://patient.info/forums/discuss/dr-goldstein-lecture-271556
I went to the dr. yesterday. The lump is definitely smaller, but still there. It is no longer painful. I told him about Dr. Goldstein and the pseudosytic smegma abscess, and I think he thought I was crazy. He said that only happens with people with LS that is out of control (mine is not), but I don't think that is correct from what Dr. Goldstein said in the presentation. He hopes that the abscess will continue to get smaller; if it doesn't I will need to go back and maybe have it excised. What a mess! Is there anything else anyone can suggest to get rid of this thing. I am just relieved that it is not cancer, but I don't want to go through the pain I just experienced. Thanks!
It sounds pretty good. Is it getting smaller because you're on antibiotics?
I read a great article in Harpers that talked about the new way doctors diagnose. I forget what it's called, but it's flow chart thinking. They make one hypothesis and won't let go of it till they're sure they're wrong. The journalist highly recommended doing our own symptom searches. These new doctors are not Marcus Welby! My LS was not what anyone would have called 'out of control' – except an abscess and how is that not 'out of control'?
Yes, I think the anitbiotics are helping the abscess shrink. I really thought he would drain it, but he didn't want to because of its location. I am also putting a hot pack on it 4 times a day. He seemed to think I would probably always have a little lump there and he mentioned that it could flare up again. I am really thinking I should have requested that it be excised. It sounds like trouble that will probably come back.
I think most doctors really don't know much about LS. It just isn't common to get an abscess in the area where I have it, but it is common for women with LS. I just really hope this thing doesn't flare up again.
Have you ever gotten another abscess? Did your abscess completely go away after you popped it?
I never got another after the course of antibiotics and I really believe this happens at the final stage of fusion when just enough oxygen gets in to feed bacteria. When I got it there was a visible 'seam' with a pinhole opening. After it healed the seam disappeared. I'm glad you've caught it before it burst.
Having said that, I've had many like it in the crook of my groin, ever since I was a teen and I'm nearly 63. I think they were usually ingrown hairs. LS skin is just more prone... But I haven't had one in the year since my diagnosis and prescription for clobetasol.
Why are you so sure...we won't get cancer?
Hi Laura, with twice-a-year checkups the doctors will catch any slight beginning of bad cells. Squamous cell carcinoma is relatively slow and curable. My mother has had it in two places (head and neck) and her doctors were in no hurry to cut it out. She had a festering spot on her neck for years and still it all came out fine. My sister had quite an extensive patch on her vulva after years of neglect (she just thought it was psoriasis) it was removed many years ago with no recurrence. The other thing is if we manage our LS well, we won't be constantly badly flared – it's a chronically irritated lesion that provides fertile ground for cancer. And we're checking ourselves in the mirror daily, so we'll notice the slightest change.
If you watch Dr. Goldstein's presentation (on the list of links in the "New to LS - start here" discussion pinned at the top of this forum) you'll hear him say he has 1200 LS patients and the only one who's gotten cancer (statistically he should have dozens) is a woman who left his practice and her treatment for three years. When she came back she had cancer.
Worry and stress are our enemies, so thinking this way is just one more positive thing we can do for ourselves.
i know this post is old, but wanting to reach out I have the exact same situation as Morelli19. My question is about the scarring, once the 'seam' closed fully and the little whole was not there, did you require surgery to release the adhesion? I was diagnosed about 5 months ago with LS, when i was referred to the gyne doc for this ?abscess/cyst? that my family doctor was not sure about. i have had 4 flare ups now of the cyst forming, draining through the little hole once it gets quite large. my doctor had mentioned doing surgery to remove the cyst and release the adhesion to expose my clitoris again. It makes me nervous to have surgery there and have worse scarring from the LS
Hello. I have exactly the same question and am hoping that a previous poster will reply. I joined this forum just to reply to you, as I saw your post was only 7 weeks old. While waiting to see a gynae, the hole that I have left is getting smaller and smaller and I am very concerned about what happens next. It is reassuring to hear about antibiotics potentially being enough, as I had convinced myself that surgery was the only outcome... I would be very happy to not have surgery, as I have no issues with my clitoris otherwise - it works as it should - and I am afraid of worsening the LS (I am only 30 and have been mostly asymptomatic)! In fact, my whole life I didn't realise that my clitoris wasn't supposed to be buried under my skin and I didnt realise the hole should be there... I was never warned about fusion over the clitoris, when diagnosed with LS, and noone ever commented - I feel let down. I was prescribed some flucloxacillin by my GP but that wasn't enough - my guess is you would need stronger antibiotics? I'd be grateful for any reassurance from anyone on this thread. Thank you.
When you say, "get worse before it gets better", does that mean there is a chance I can go back to being pain free again, once it closes up (assuming antibiotics work)? I am really hoping to avoid surgery and this gives me some hope. Thank you.
I'm arisen from the retired to answer these two questions! My feeling about surgical re-opening of the fused labia over the clitoris is that LS wants to erase 'architecture' and LS flare-ups are triggered by skin trauma. So slicing doesn't seem like a good idea. When I look back on the time when I had the burst abscess, I was in a bad relationship (the last of many) and having sex too frequently to heal from the cracks that always formed. I honestly can't relate to women who are with loving men and want to make love. It's been quite a few years now that I've been happily alone. I throw all my passion into learning piano.
One development last few years: I was a bit stingy with the Protopic ointment for years and I've had two bits of suspicious cells nipped off at my annual colposcopy visits. I always used the mirror to check my perineum, but the little nib formed under the lip of my fused labia. Now I use a bit more ointment and every third night religiously.
Not sure this was any help... I do feel for anyone having this happen at age 30!
Thank you for coming out of retirement, as you put it! I am grateful. I agree with you on surgery and would like to avoid it. I feel like I've had to drain my own abscess multiple times now, while waiting for an appointment. It keeps returning. I am concerned I will finally fuse completely and it will cause all sorts of problems. But I am reassured by yourself and the other poster that antibiotics might be enough and surgery might be avoidable... I was actually disgnosed at 19 but never really believed it. Noone properly explained what they were seeing or what changes i should look out for - only scar tissue, which didnt surprise me because I had an accident as a child which could have caused it (and, in hindsight, probably triggered LS). I've had very little itching or pain until turning 30. I am hopeful that, once this period of clitoral hood fusing is complete, I can get on top of treating the LS and go into remission for long periods... I am very scared of how this might progress over the next 50-60 years. I am lucky that I have s very supportive partner and I am hopeful that he sticks around. I am glad you have found the piano and are enjoying learning something new! I've always wanted to learn but never gotten around to it :-).
I think as long as you don't have penetration & friction while you're flared up or cracked, you'll have a fine life.
I'm very glad I saved learning piano till I was 68.