ktgrok Posted June 3, 2016 Share Posted June 3, 2016 They are back!!! Ugh ugh ugh!!!!! I've been keeping them at bay by using a chlorhexidine wash down there every time I shower. Seemed to work. But now they are BACK! Not sure why, other than hot weather maybe? Hormones? I just got my IUD out last month. Oh, and my period just ended and we are about to start trying to make a baby, and it is going to be a LOT less fun if I have painful cysts down there!!!!! I have 3 right now...two painful, one just a baby one. Which isn't as bad as the time I had FIVE big ones, but it's not good. This started a week ago, with just one, and I was hoping it would be gone by now, but no. I started using the clindamycin ointment on it she prescribed, and just called the dermatologist office to ask for another round of antibiotics. I want it cleared up now, before I get pregnant and become more concerned about using/taking meds. And I want it cleared up so I can enjoy the baby making process! I HATE these things! I never had teen acne that was very bad, I guess this is what I got instead. Bergh. Quote Link to comment Share on other sites More sharing options...
mamiof5 Posted June 3, 2016 Share Posted June 3, 2016 ðŸ˜ðŸ˜ðŸ˜hope they go away very soon! Quote Link to comment Share on other sites More sharing options...
StephanieZ Posted June 3, 2016 Share Posted June 3, 2016 Warm soaks . . . and, if you are getting cysts in an area you shave, you might try "TendSkin" post shaving -- it is a sort of after-shave -- and it works like a charm to prevent ingrown hairs/bumps . . . I get it on Amazon. It's awesome. For sure, if you're shaving those areas, try it. (Stings for a second when applied, but not too bad, and WAY worth it.) Other than that, I'd just be sure that any antibiotic you use would actually help . . . Do your research . . . The last thing you want is to trigger yeast infections . . . which, for me, commonly occur with antibiotics! Anyway, you aren't going to want to go on ABX willy nilly, and if you've been getting the cysts frequently, you'd be best off with another approach if there exists one! Sorry you're suffering. Those things SUCK! FWIW, I'd totally hypothesize that hormonal shifts could play a role . . . as could any increased attention those "fun parts" are getting in the TTC warm up and/or grooming . . . IME, those sorts of things seem to have correlated with a spike in cysts. (And, I didn't get any more once I discovered TendSkin, but that might have been coincidental.) Quote Link to comment Share on other sites More sharing options...
ktgrok Posted June 3, 2016 Author Share Posted June 3, 2016 Warm soaks . . . and, if you are getting cysts in an area you shave, you might try "TendSkin" post shaving -- it is a sort of after-shave -- and it works like a charm to prevent ingrown hairs/bumps . . . I get it on Amazon. It's awesome. For sure, if you're shaving those areas, try it. (Stings for a second when applied, but not too bad, and WAY worth it.) Other than that, I'd just be sure that any antibiotic you use would actually help . . . Do your research . . . The last thing you want is to trigger yeast infections . . . which, for me, commonly occur with antibiotics! Anyway, you aren't going to want to go on ABX willy nilly, and if you've been getting the cysts frequently, you'd be best off with another approach if there exists one! Sorry you're suffering. Those things SUCK! FWIW, I'd totally hypothesize that hormonal shifts could play a role . . . as could any increased attention those "fun parts" are getting in the TTC warm up and/or grooming . . . IME, those sorts of things seem to have correlated with a spike in cysts. (And, I didn't get any more once I discovered TendSkin, but that might have been coincidental.) Nope, not in a shaved area. But, yes, we DID have more um, activity, leading up to this!!! I didn't even think of that. But the doctor had previously said friction/sweat/bacteria could be issues, and to bathe immediately after exercise and not wear tight clothing that might rub. But now that you say that, I wonder if bathing right after um, adult time, might keep this from happening? I've gone 6 months with nothing, and now boom..lots. But we did increase our adult time recently, right before this started. Hmm.... 1 Quote Link to comment Share on other sites More sharing options...
Caraway Posted June 3, 2016 Share Posted June 3, 2016 Google Hidradenitis Suppurativa. Is it that? If so, the book "The Hidden Plague" is really good. Sent from my iPhone using Tapatalk Quote Link to comment Share on other sites More sharing options...
ktgrok Posted June 3, 2016 Author Share Posted June 3, 2016 Google Hidradenitis Suppurativa. Is it that? If so, the book "The Hidden Plague" is really good. Sent from my iPhone using Tapatalk I don't think that is it, mainly because that is something that ruptures/drains and these never do. I think they are just regular old sebaceous type cysts, or something similar. Quote Link to comment Share on other sites More sharing options...
Caraway Posted June 3, 2016 Share Posted June 3, 2016 HS is not always rupturing. Do you have any autoimmune issues? Thyroid? Celiac? Sent from my iPhone using Tapatalk Quote Link to comment Share on other sites More sharing options...
ktgrok Posted June 3, 2016 Author Share Posted June 3, 2016 HS is not always rupturing. Do you have any autoimmune issues? Thyroid? Celiac? Sent from my iPhone using Tapatalk Read some more, and it might be mild HS. Nothing else really makes sense, as supposedly cysts are not painful and these are quite painful. And antibiotics don't help much,if at all, which is also common with HS. Seems there isn't much treatment for HS, although it is linked to hormones. Sigh. At least if that is it, it's a very mild case. No thyroid or celiac problems, but I have in the past had a higher than normal sed rate. My mom has something called inflammatory arthritis, which is not osteoarthritis but also not rheumatoid arthritis...my aunt has it too. It's autoimmune. I thought I had the beginnings of it a while back, but then symptoms mostly went away. Quote Link to comment Share on other sites More sharing options...
Caraway Posted June 3, 2016 Share Posted June 3, 2016 The book I mentioned is more informative than most doctors on this topic. Sent from my iPhone using Tapatalk Quote Link to comment Share on other sites More sharing options...
ktgrok Posted June 3, 2016 Author Share Posted June 3, 2016 (edited) Just read the reviews/description of the book. I CAN say that I was eating some crap food before this flare up! Normally I eat similar to paleo, with high protein, low carb foods. But I was eating more crap. Hmm. If avoiding wheat/grains would get rid of it I'd be all over that in a heartbeat. These HURT! (and I JUST ate a handful of animal crackers while pouting that my girly bits hurt - oops) I've also had less sleep lately and been stressed. Edited June 3, 2016 by ktgrok 1 Quote Link to comment Share on other sites More sharing options...
TammyS Posted June 3, 2016 Share Posted June 3, 2016 You might want to try using the wash a few times during the day, not just when you shower. And definitely after any activities. Quote Link to comment Share on other sites More sharing options...
Guest Posted June 3, 2016 Share Posted June 3, 2016 That just stinks, I'm sorry! I hope you can get to the root of this and won't have another flare up. Quote Link to comment Share on other sites More sharing options...
ktgrok Posted June 3, 2016 Author Share Posted June 3, 2016 You might want to try using the wash a few times during the day, not just when you shower. And definitely after any activities. I started twice a day last night...hoping that helps. And yes, will start using it after any "intimate" activities. It would make sense that that kind of friction could irritate things. Can't hurt to try using the hibiclense afterwards. And going back off grains, just in case. (sigh...I have croissants in the house) Quote Link to comment Share on other sites More sharing options...
ktgrok Posted June 3, 2016 Author Share Posted June 3, 2016 That just stinks, I'm sorry! I hope you can get to the root of this and won't have another flare up. thank you. I hate it. Not only is it painful (this isn't nearly the worst flare up, but it is still painful), but it's honestly embarrassing. Even making the appt at the dermatologist, they were like...you have a cyst on your elbow? No, no, on my VULVA. Sigh. Quote Link to comment Share on other sites More sharing options...
TammyS Posted June 3, 2016 Share Posted June 3, 2016 I started twice a day last night...hoping that helps. And yes, will start using it after any "intimate" activities. It would make sense that that kind of friction could irritate things. Can't hurt to try using the hibiclense afterwards. And going back off grains, just in case. (sigh...I have croissants in the house) If friction irritates, I wonder if it would help to put some personal lubricant on the spots, just to decrease friction from other skin or clothes that might rub as you go about your day? Quote Link to comment Share on other sites More sharing options...
ktgrok Posted June 3, 2016 Author Share Posted June 3, 2016 If friction irritates, I wonder if it would help to put some personal lubricant on the spots, just to decrease friction from other skin or clothes that might rub as you go about your day? Maybe? Right now I'm using some antibacterial ointment, but I'll try it once things clear up. I don't KNOW that friction causes it, but the doctor speculated it might. Quote Link to comment Share on other sites More sharing options...
Caraway Posted June 3, 2016 Share Posted June 3, 2016 (edited) I have HS (hello Internet!) and it was AWFUL in high school. I saw all kinds of doctors and nobody had a clue. I did antibiotics, which helped sort of, lancing (yuck), extra washing, different underwear. As a young adult it was mortifying. Dermatologists sent me to obgyns, obgyns sent me to dermatologists. Now that I've treated my other autoimmune issues and eat mostly paleo I rarely get them. If I do get a flare up it is way less of an issue and can usually be tied to stress or accidental gluten. That book actually made me cry - even all these years later, when I had basically "cured" myself. Sent from my iPhone using Tapatalk Edited June 3, 2016 by Caraway Quote Link to comment Share on other sites More sharing options...
ktgrok Posted June 3, 2016 Author Share Posted June 3, 2016 Ugh, there is ANOTHER one now!!!!!!!! I think that makes four so far. My record is five. UGH UGH UGH! I did buy smaller underwear a while ago, but it certainly isn't tight, and is the same kind as I have been wearing. It's lace, so extra air, lol. That's it. No more grain. (I've had dairy all along, with no flares, so hopefully that can stay). I've had, recently, croissants, cookies, ice cream, and all sorts of stuff I shouldn't. In fact, it could be sugar, not grain, but time for both to go. And yes, gynecologists had NO idea what it is, and the dermatologists don't seem to either. I need a gynderm or something. Quote Link to comment Share on other sites More sharing options...
ktgrok Posted June 3, 2016 Author Share Posted June 3, 2016 Found some blog posts written by the woman who wrote that book, and saw more photos. Um, crap. It probably is stage one HS. Lovely. And nightshades are my favorite veggies. I don't think I'v had more though..I really don't think that could be the trigger. I have had more chocolate, more bread. Quote Link to comment Share on other sites More sharing options...
Caraway Posted June 3, 2016 Share Posted June 3, 2016 Nightshades don't normally trigger issues for me. YMMV. Sent from my iPhone using Tapatalk Quote Link to comment Share on other sites More sharing options...
Catalytic Posted June 4, 2016 Share Posted June 4, 2016 The book I mentioned is more informative than most doctors on this topic. Sent from my iPhone using Tapatalk It has to be, in 20+ years, I've yet to meet a doc who knows much at all about HS, if they have heard of it at all :cursing: Quote Link to comment Share on other sites More sharing options...
Catalytic Posted June 4, 2016 Share Posted June 4, 2016 I thought nightshades were a trigger for me, but I've pretty much eliminated them for over a year and I still have raging HS. Haven't seen any improvement at all. Was on tons of Clindomycin after I got HA-MRSA, and I still had flare, had to restrain myself when the last derm I was referred to in 2012/2013 handed me a script and said "This'll cure it!" Yeah...not. His next offer was the year of abx, no, I'd rather suffer honestly. Maybe you all can inspire me to go Paleo once I get settled from the move. I started Whole 30 last year, but there's like literally 5 things I eat on the AIP list, sigh. Quote Link to comment Share on other sites More sharing options...
Guest Posted June 4, 2016 Share Posted June 4, 2016 Googling this condition is truly awful. It looks horrendously painful and the stage three sufferers look more like chemical burn victims than something like acne. I hate that things like HS and cystic acne have no real fires and the treatments are so individual :( Quote Link to comment Share on other sites More sharing options...
ktgrok Posted June 4, 2016 Author Share Posted June 4, 2016 Googling this condition is truly awful. It looks horrendously painful and the stage three sufferers look more like chemical burn victims than something like acne. I hate that things like HS and cystic acne have no real fires and the treatments are so individual :( Yeah, I'm not going to lie, googling has me a bit terrified. If this is what I have (and honestly.....it seems it probably is) I'm in stage one. Dear lord, let me never get to stage 3!!!! I'm hoping I won't, given I'm 40, have had this for decades and am still in the same phase. However, the last two flares have been the worst so far, with multiple lesions at once. Mine never rupture, they just go away eventually. That it isn't bacterial makes SO much sense to me, as I've used bactroban, bacitracin, and clindamycin topically and various antibiotics orally and they do little to nothing. The hibclense does seem to help some, but it has some other actions other than strict antimicrobial, supposedly. Treating it as inflammation rather than infection gives me another way to think of this. And explains why hot compresses sometimes make it worse. I did cold compress last night, with ice water, and I'm using cortisone cream along with the bactroban. And, I took an Aleve last night, which I think helped some. And will go strict AIP (well...except for dairy, I really don't think that is related). Quote Link to comment Share on other sites More sharing options...
mmasc Posted June 4, 2016 Share Posted June 4, 2016 I admit that I know nothing about this condition, but if you think it's inflammatory and responds to anti-inflammatory products, have you thought about getting a cortisone shot? I only have gotten them for sinus infections (which I know is totally different), but man, they are really awesome. Almost instant relief. Hope you feel better soon. Quote Link to comment Share on other sites More sharing options...
Farrar Posted June 4, 2016 Share Posted June 4, 2016 Hugs. I also have, um, skin issues in that area. Different, but oh gosh, it's no fun. I know exactly what you mean about seeing the dermatologist and having to explain where we're talking about. Every dermatologist seems surprised, like, oh, I'm looking somewhere I don't usually look, which, good grief, that doesn't help! Quote Link to comment Share on other sites More sharing options...
ktgrok Posted June 4, 2016 Author Share Posted June 4, 2016 (edited) I know they sometimes do injections into the cysts, but haven't heard of doing just a regular injection. It makes sense, but don't know that a doctor would do it. Right now it's a bit better I think....two are smaller, one is almost gone (the most recent one to pop up) and one is quite painful and swollen. Of course, that one is on the labia minora and in a tender spot. I really am thinking there may be either a diet, stress, or something connection. Because I'm sitting in Panera writing for a deadline and I vividly remember having this same pain at least one other time while scrambling for a deadline. And the doctor says the last bad flare up was January, but that's just when I went in, I think it started more like december...when I was eating a bunch of sugar, and under the stress/lack of sleep of the holidays. I'm avoiding sugar for the time being (which I need to do anyway) and didn't have anymore bread/grains/carbs yesterday after lunch. Already my belly is smaller, which is insane. Edited June 4, 2016 by ktgrok Quote Link to comment Share on other sites More sharing options...
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