How are any of you dealing with the emotional component of the symptoms and problems with LS and related diseases? You can't talk t o friends about this, barely anybody, in fact. This problem has nearly ruined my life and I'm so upset. I am not dealing with the stress very well and the thought of being permanently bedridden from the surgery to remove all the skin and the resulting permanent catheter and ostomy, not to mention the pain is about driving me insane. There would be no quality of life there and certainly no going to work anymore. Anyone have a suggestion? Tried church, pastors, counselors, got nothing.
DR n- Not sure of all your issues, what you ate talking about sounds very drastic. I was diagnosed with LS a year ago ( JUNE). The first few months were hard, I couldn't wear pants most of the summer, couldn't ride my bike or work out much due to tight yoga pants being way too uncomfortable. I adjusted my diet, cut out sugar, ate lower oxalate foods, used emuaid to heal, got clobatosol after 6 weeks waiting, added immune boosting supplements to my daily regimine, and by SEPTEMBER was wearing pants, back at work, asymptomatic. I have been " in remission " for 8 months now. My sex life with my husband has lessened, my orgasims are less intense, my labia is smaller, my clitoris less sensitive, but it is not a death sentence. You must have other factors that are worsening your LS condition?? PLEASE don't give up hope!
ive been diagnosied with ptsd and no intimate relations for 3 years, i now have a "roommate" not a husband no fault to him this was new to us all right now just holding on hoping to die, sorry but the lonliness of not being abke to discuss is brutal
It sounds like you a LOT going on besides just the L.S. When I was diagnosed, I fell into a deep depression and had to seek counseling. my counselor had never even heard of this condition, but by our next visit, she had educated herself. I knew that she was a keeper until I could get a handle on this. My counselor specialized in treating patients with catastrophic illnesses. Now, my L.S. is not to the point where I have cancer and I am blessed to have a good specialist. I am also able to talk with my sisters and a few close friends about it, because I want them to pay more attention to their bodies, than I did. I am 59, single and have resigned myself to the fact that I won't date or ever have sex again, because despite counseling, this condition saddens me greatly and I don't want to bring anyone else into it. Right now, I am focusing on the other issues that I have that CAN kill me if left untreated; L.S. won't kill me. I know you said you have been in counseling, but you need to see one who specializes in dealing with more than just everyday stress.
Dear dr n, I am really saddened to hear of what you are having to go through because of this dreadful LS condition - I have been dealing with mine for 8 years now. I am trying to think clearly for you about the potential sources of Talking Therapy and Health Focused Counseling Psychologists who can help you to deal with the specifics of your situation. So, the initial potential source could be the Hospital where you had the procedures carried out - often these will have a helpline where you can get back in touch about associated issues related to your surgery and the resultant circumstances you are currently really struggling to deal with. Often hospitals or other surgical facilities will have a network of voluntary helplines who can help patients deal with the broader nature of what they are going through following medical procedures, often, initial contact can lead to the right source of expertise that you really need right now. In addition, as most of us have had in the past, we may know of family members, work colleagues or friends and other acquaintances who have had a severe health condition, and part of their recovery may have been down to the support of the likes of a health psychologist, talking therapist or other counselor, who helped them pull through. Perhaps you can think on someone you can call on to get a contact number from? It is often at times of severe stress like this that we cannot think of paths forward to help us deal with everything that we are going through at a particular time - and because of this there are many Voluntary Helplines in the Localities, Towns, Cities and Regions in which we live. Often many of these are health focused, and others deal with a broad range of sources of distress, or simply help people who are feeling at their lowest. Again, the whole relevance of all these sources of support is that once you start contacting other people and you briefly outline what you have going on, they can then think in-turn where it is you may get precisely the right form of support that you need. I do sincerely hope that you can begin the process of finding just the right form of expertise that can help you with your health and broader psychological circumstances. Stay Strong and Good Luck .....
How long did it take for clobetasol to work? Six weeks? I am on it six weeks now and I feel better (can have sex with minor irritation) but it still looks awful.
Dear Wee, I don't think there's that much going on down there. There have been no procedures or surgery but I am losing my job in 60 days as I cannot sit to get the work done and will have to move out after that as cannot stay where I am with this condition. Have seen 5 docs, no answers, only 1 said she knew what it was. Two counselors that I could afford said read the bible and be patient. Cannot file for insurance because then employer would fire me right away. No family left and friends don't want to hear about it. Three have walked away. I appreciate your support!
Hello Karen, Thank you for your response. There's been no biopsy to definitively tell what's going on. Dr. just "said" it is LS but then next 4 drs say no. What to do? IF one were to have this surgery it is very radical and life-ending and I'm trying to find a definitively answer to this pain. Ibuprofen does not touch it. Have adjusted diet and taken supplements and am heading into 6th month of issues. Don't much care if sex is no longer possible just trying to stay productive and not bedridden. I am glad to hear you are doing better! You are lucky to have support.
Write to me Christine. drnanswers@gmail.com I do care.
Hi Angela, I don't think I have many other health issues other than getting old. I am very fit and active, at least until this condition, whatever it is, began. One of 5 docs say it is LS but no tests have been done. After 5 months it still hurts and I cannot sit or sleep. Am glad you have a good specialist and sisters and friends to talk to. Emotional support is very important. I have none of that. In fact, most of my friends have walked away, my family has died, and I can't talk to the other remaining friends. What hurt most was my best friend of 30 years walked away from me saying she didn't want to hear about it because she was too busy and I must have done something to cause it. I am losing my job in 2 months and will have to move. No health insurance then either. Trying to figure this out. Thank you for writing.
Hi JJ, Clobetasol worked in 4 weeks to rid the white patches but then the skin got irritated and inflamed and has been sore for 4 months. Have not tried sex and glad to hear you feel better. Do you have skin pain with the LS? If so, are you using anything else on it besides Clob.? Best of luck.
Sorry dr n I am a bit confused by what you state in your original post: . " the thought of being permanently bedridden from the surgery to remove all the skin and the resulting permanent catheter and ostomy, not to mention the pain is about driving me insane " . so has this actually happened to you, or is this more of a nightmare scenario you imagine could well happen to you? Don't forget, the Wonderful ladies on here will not walk away from you, they are a constant source of support for others who are suffering from this horrible LS that we have in common ......
Dear Dr. N.
My careful caring long email yesterday was deleted by the admin. So I'll just send the guts and I apologize for the shortness of it.
So sorry about 6 months of pain. I"m not sure if you've tried some of the soothing creams we've all discovered? Coconut oil, olive oil, A&D diaper rash ointment, castor oil with a few drops of lavendar, Aloe vera gel with drops of tumeric extract; also soaking in a bath with borax and baking soda (they are both alkaline). Some are barrier ointment and the others actually have healing properties - especially the aloe/tumeric.
When I discovered this about 2 years ago, I spent quite some time searching online M.D. and N.D.s all the nutritional deficiency aspects I could correlate for autoimmune diseases. Here is what I discovered, these two are in my discussions list.
https://patient.info/forums/discuss/nutritional-support-protocol-for-autoimmune-diseases-636963
and as much science behind it all that I could find. https://patient.info/forums/discuss/pathway-into-and-out-of-autoimmune-diseases--661033
Nancy, Asheville, NC USA age 73
Hello Wee, This surgery is what is done when the situation continues. It is a last resort. It is a well-documented procedure in the medical journals and 2 docs have confirmed it is a possibility. I regularly read medical journals as I h ave free access. People who have this drastic surgery generally lose all or most functionality and have to have 24/7 care as long as the bank account held up.
Hi Nancy, Thank you for your intentional caring. I know about admin deletions..... I will check these links out. Yes, I have used all you mentioned except the borax/baking soda but have no bathtub. Have to figure out another way.
Do you live alone or with someone and if with someone, is that someone supportive? I hope so. We need support. That's what I don't have and trying to talk to friends has left me with 5 fewer "friends." I am losing my job because of this and maybe my place to live. (Am sharing house).
Have read books on auto-immune problems but docs refuse to do tests and I am already out of pocket quite a bit of money. I have a virtual drug store at home! Think I'm going to try bourbon on it. next. Hah hah. Trying to keep my sense of humor. THANK YOU!!!
OH Dr. N. So sorry you have such miserable friends. That comment about you "must have done something" is so ignorant. If you want to try to resurrect your best friend relationship, you might want to let her know that LS has finally been confirmed to be an autoimmune disease... just a different version of things like psoriasis, vitiligo, etc. Skin diseases are all evidence of liver under distress. NOthing to do with sex etc. and not communicable etc.
Anyway, other women here have mentioned using a sitz bath. That should help tremendously, I take one regularly.
Oh, yes I live alone, but I have good neighbors and a couple women friends at the other end of the telephone. But like others here. I don't go into details, but appreciate the commiseration. So many of us here are in our 50s 60 70s and up!
When you've had time to read my articles you'll find that I discovered that autoimmune conditions of any sort respond best to Vitamin D 25OH at greater than 60 ng/dl. Many doctors don't know this, so you might want to call the office of one of your docs to find out your exact number. Most literature let's the minimum be their reference point - but if you(anyone) have cancer or any other autoimmune condition - the bare minimum won't do sh** for healing.
I just mentioned to Jeannie j on here today that when I first figured this thing out, before even seeing a gynecologist, I took 15,000 iu daily and felt somewhat better within 2 days. Of course each person's needs are different.
by the by, are you in the U.S by any chance? If you are feeling in such dire stress as it sounds like, have you considered simply applying for early social security? age 62.
ONe more thought... about 33-35% of us LS sufferers are ALSO Hypothyroid. Have you been tested? I spent 15 years asking one Doc or another to test me for low energy etc... the TSH and T3 and 4 always came back "normal". It wasn't until I looked for a second opinion cardiologist for a heart issue that this amazing man said that most other Docs forget to also test something called TPO ( antibodies to thyroid). BINGO, DUH! oh my gosh I hadn't realized exactly HOW low energy, mental fog I'd been in for some years before getting on Levothyroxin. so you may want to get that tested too.
Why are they trying to make you have surgery if they don't even know what you have? I wouldn't get surgery until you try everything else. LS can be controlled.You can still have a wonderful life! Get an LS specialist and have them test you (biopsy) before you have any surgery. So many doctors aren't informed enough on this condition!
drn, this is very confusing. What "situation" are you referring to if the drs aren't in agreement with what your ailment is? You seem to be describing a vulvectomy. Why would that be necessary if you do not have cancer? What exactly is "this situation"? Is it your extreme discomfort? Please clarify. Several of us have recommended a donut pillow. Have you gotten one? You say you haven't a tub to soak in yet for very little $ you can get a sitz bath at a pharmacy. Those are 2 simple and affordable things that may offer physical relief immediately. If I were you I would get on an anti-anxiety medication ASAP so you can calm down and deal with your problems one step at a time. I'm a pretty loyal friend, but have distanced myself from people whose anxiety became toxic to me. Could that be what happened? I'm not blaming you; just trying to understand why long term friends have pulled away. It's only normal that you would be stressed by your possible (?) upcoming job loss. If your issues are in fact causing you to lose your job (if that is what's happening) find out about collecting disability. If that isn't possible unemployment insurance should be available. You sound totally overwhelmed so you really need to break it down in steps. Write a list of options. I wouldn't drink too much as that is a trigger for LS for some women and alcohol doesn't exactly promote clear thinking. Do you have a GP? That might be the best person to help with the anxiety issues. People here will listen as we have LS, but in order to offer any possible help we have to understand what it is exactly that you're dealing with. This may sound silly but try deep breathing and look for pictures online of whatever makes you happy: puppies...whatever. It will release endorphins and calm some anxiety. Petting animals does also if you have any or know anyone who has them.
Hi Nancy, All good points you mentioned. Yes I told my 30 year "friend" Roberta that it was likely auto-immune which she did not understand. Have been taking synthroid for 30 yrs and all was well in Dec '18 on thyroid and the Vit D was 42. Am taking more D3 now. Yes, I know about D's powers to heal. Had thyroid antibody test (thyroid peroxidase) long ago which was high but current doc will not repeat it. (??) Early SS gives me so little that I would have to begin digging into savings to pay bills and insurance in US, in my area, is $1,000 a month plus $5,000 deductible and many carve outs. Retirement is not an option plus I love what I do. It is all I have left in life. Update- doc this morning said she does not think I have LS but did not do the biopsy either and says vulvar atrophy and maybe colon problems. Have NO trouble with colon as of now. Doc does not know what to do next so I am likely on my own. Am taking probiotics, enzymes, (serripeptidase), A & D, extra D, Good B vits, natural C and E. Have read of the liver congestion issue. Have to check that out further. I will seek out all of your posts. Thank you. Will check back
Hi Beverly, The surgery was presented as an option if the vulvar pain never decreased or symptoms could not be managed. Current Doc doesn't think it is LS or know what's wrong but suggested I take neurontin. I have a donut but it is little help. Will get sitz bath. Have also tried North Pole Magnetics which have helped a little. Have you ever tried that? Have 14 different emollients. Nobody really knows what's wrong with me at least none of the 6 drs I have seen including the naturopath. So, I am sorry if my posts seem vague. That was not my intent.
OTC anti-anxiety stuff helps and I do take it. It's hard to be calm when you've lost all family members (death) and two best friends (death) in the last year and a half, 3-4 other close friends (walked away) and your job is at risk. I don't drink much but a little calms one down, especially when I get home at 10 pm, from working 12 hour days. I am also expected to work weekends. I have a house to maintain and do much of the work myself because no one can afford services here. My landlady has pets but as she is getting senile, I am assuming more and more of their care. Cannot afford to move out. As far as friends, I don't bring up my problems unless one asks. It was ok when two friends were in the ICU for a week with their life and death issues and wanted my support but the minute I needed their support, they are gone. Of 5 remaining friends, 3 are bedridden with cancer, lung and heart problems or a stroke (all recently), one is doing well and the other so-so .
Doc will not write a disability letter and GP does nothing. Need new GP. Unemployment insurance won't pay if they fire me because I cannot sit all day to do my work because that is a "for cause" termination.
Maybe you're right. Maybe people feel my anxiety is too high. I will take that into consideration along with everything else. Thank you.