abscess!?

Nancy -

Thank you for taking the time to share all this information with me. I really appreciate it. I probably should be taking more supplements to build up my immune system to try to avoid these problems, but since things have been under control for the most part, I got lazy. I won't let this happen again. Ouch!

Monday morning can't come soon enough for me! I did request an antibiotic, but he didn't think I would need it.

Thanks again!

Nancy, I have to agree with your questioning why the doctor did not prescribe an antibiotic. I wonder if he were sitting on an excruciating boil that couldn't be lanced for days what he would do. I'm also wondering what LS has to do with a boil forming as boils are caused by staph. Is there some connection? Is it that LS just makes us more susceptible to infection?

Re taking supplements I have been taking quite a few based on a book written by a person (an MIT trained chemist) who experienced a total collapse of his immune system. Despite taking them the LS, which seemed to be almost completely disappearing, returned and spread requiring a stronger steroid. Have you found any evidence that supplements are helping you lessen your LS or infections? Are you continuing to use a steroid?

I am awaiting a date for an appointment with an MD who applies a more holistic approach. He accepts my insurance so I hope to have the ANA and any other tests that might help me identify any foods my body may be reacting to. Have you had these done? My gyn who is a vulval skin specialist was very much in favor of my going this route. Finding a doctor has been the biggest obstacle. Why most doctors are willing to just stop at prescribing steroids is a mystery to me. Also, have you or anyone reading considered seeing an endocrinologist?

I think, if I remember correctly from the last time, the abscess first appeared a few years ago when I was having a difficult time controlling the ls. I had just had a baby and a serious bladder infection too that required antibiotics. I was a mess down there, partly due to the pregnancy I suspect, and nothing I tried helped to control the LS. He speculated that the abscess was a result of the trauma to the area, the fissures and tears as a result of the itching, and my weakened immune system due to giving birth and the bladder infection. He had told me that once you get an abscess, unless the whole thing is removed, there is always a chance that it may come back. It was dormant for 5 years. I have no idea why it decided to come back now! So strange. I did just do some international traveling, so maybe the schedule was too much for my immune system or just bad luck. I don't know.

This is a wake up call to get me vigilant in keeping this LS under control.

Thank you!

kbo, you are doing a good job at re-affirming that my decision to not have children was the right one. Yikes! Not sure how you are juggling all that you must be handling. You may be right about the reappearance of boils. I know people who have gotten them tend to get them again.

What does your vigilance to control LS entail?

Funny! Some of the pregnancies (I have 6 children) were a lovely vacation from LS with absolutely no signs of LS for 9 months, but 2 of the pregnancies definitely made the LS worse. The pregnancy that resulted in the abscess was by far the worse which is probably why I got the abscess. There was nothing that helped the burning and itching, so I just had to deal with it! It was not fun. I truly couldn't wait for the epidural to numb the area.

I really haven't been doing much to manage LS because it hasn't been much of a problem for the last few years, probably since I resolved the last abscess issue. I usually get a little flare up right before my period. If I am paying attention to my cycle and use clobetesol a few days before, I am able to prevent trouble. That is why I was surprised the abscess reappeared! But, this abscess has reminded me I better pay better attention to the LS and be more vigilant. This isn't fun!

kbo, there is a theory that LS and estrogen are connected, but maybe inconsistently. Most people who get it are menopausal women (drop in estrogen) and next I think prepubescent girls (no rush of estrogen yet). But as women can get it anytime in between (though in lower numbers) the estrogen theory could somehow be involved. Haven't a clue why men get it. I believe women produce more estrogen while pregnant, right? In my case the doctor said it was because of too little estrogen; I had already been diagnosed with atrophic vaginitis . But there are women with AV who do not develop LS, so clearly no one has a consistent explanation. It is said to be an autoimmune disease, but that's not agreed upon by all medical people. I have also read that it's genetic. Does anyone in your family have it? No one in my immediate family had it, but that's all I know of.

OH Beverly! oh yes, my personal experience is that nutritional supplements have helped tremendously. I also kinda proved it for myself a few months ago when I had run out of most of my supplements that I had discovered are all interconnected. Here in the states vitamins aren't covered by insurance - at least not mine. It was 3 MONTHS before I could rebuy the whole complement... and I had been back to discomfort for a bit. Then big smiles back to calm. I don't think I'm gonna let that happen again!

Oh, but I've never taken the steroid - because that is not covered either and cost $180 here in the U.S. My social security doesn't cover that much. For me I'm actually glad because it set me on the course of serious study to find out about nutritional requirements for any autoimmune disease... and along the way I've realized that these are the same nutrition at is needed to live a long life - grin - I've got a 3 year old grandson I want to see graduate from high school and I'm already 73.... smiles.

Yeah, we can all agree here that the lack of research interest by out doctors is unfortunate.... we just have to help them along.

Even my brilliant cardiologist who also became an integrative doctor knows all about how important vitamin D3 is - that there is a worldwide deficiency.... but he didnt' know that we HAVE To take K as well; and magnesium and several others. Co-factors is the key word here if anyone wants to become their own expert. I printed off for him what i'd learned and he was appreciative...

You can build on what i"ve discovered. please do...

https://patient.info/forums/discuss/pathway-into-and-out-of-autoimmune-diseases--661033

Nancy, are you sure your insurance wouldn't cover a steroid ointment? I had a Medicare HMO and have switched to a PPO but under both companies the steroids were very affordable. Think I just paid $8 for the clob (which I have graduated to). Do you use Medicare with a separate plan for meds? This may vary state by state. I'm in the more liberal Northeast where the ACA was welcomed, not rejected. Maybe that's the difference?

I do pay for the supplements which certainly add up. I have read about K but forgot about it, But I can't say what I have been taking has made any difference. I'm afraid I have tried a few times to get through your page of references, but haven't been successful.

I'm waiting to hear back from an MD who practices integrative medicine and will hopefully be helped by tests re antibodies, etc. Have you had any of those? I feel this is too complex for me to figure out on my own. I did have my GP test for thyroid, which he said was normal, but I have since read it's the antibodies that are most important. Hence I want a Dr who is working with a more comprehensive approach to disease. Am reading O'Bryan's book on autoimmune now. Have you eliminated gluten? I've been eating little if any for nearly a year, barely drinking any wine (sob) and haven't eaten much sugar for many years. I see some women do the paleo diet. Too many directions to go in on one's own. Eagerly awaiting contact from the new doc's office so I can get started.

hum... i did change to united health recently for medicare and they definitely offer more than whatever I had.. I might check, Beverly... but I'm not really drawn to steroids anyway... Listening in here for the last year or so it seems that just as many women say they can't handle the clob that it causes burning etc... well. and I guess things are working okay for me now and I working on checking out LDN for a good test.

OH! and by the way... my great Doc told me the reason that I had asked about getting tested for thyroid on and off for 15 years and told no I didn't have a condition.... is that most docs only test the T4 and and TSH.... BUT that the proof is in something called the TBO (sorry I've forgotten was it stands for) - and dang! I have those antibodies or whatever. I am SO happy that I've been on levothyroxin now since all winter.... it's just so sad that I've spent 15 years eing made to feel stupid and lack of energy....

we gotta teach our own docs when we an with love.. they are overworked as it is. I couldn't beieve my luck to find the doc i have now - haha I went looking for a second opinion 5 years ago when the cardiology group told me I'd be dead in 5 yers if I didn't take statins........

GEESH..... Dr. Bailey a cardiac surgeon just likek the rest of them but more brilliant or insightful or something.... took one look at me and said, 'I don't see heart failure in front of me - you must have gotten the flu which landed in your heart instead of the lungs - yeah it'll take a while but you'll be fine... ! and I am 2 years later...

GOod luck finding such a one in a million... !