Emotional Component of LS & Related Diseases

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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.

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  • Posted

    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!

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    • Posted

      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.

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    • Posted

      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.

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    • Posted

      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.

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    • Posted

      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!

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    • Posted

      Dear Texin- They aren't trying to get me to do this, they only said it was a possibility if they could not figure it out or manage symptoms. Five of 6 docs said I do not have LS but I wonder. So far nobody has done anything but a culture which was negative so I guess , like most things, I will be left to figure this out myself. Six docs said I didn't need biopsy but maybe I need to find dr #7. There are no specialists where I am. Wishing you well and thank you for writing.

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  • Posted

    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

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    • Posted

      Write to me Christine. I do care.

      Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

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  • Posted

    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.

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    • Posted

      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.

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  • Posted

    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 .....

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    • Posted

      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!

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    • Posted

      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 ......

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    • Posted

      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.

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    • Posted

      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.

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    • Posted

      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.

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    • Posted

      Neurontin may be a very good choice, but I think you have to ease of it. I'm sure the dr will explain. Didn 't know there was OTC stuff for anxiety. Herbal ones maybe?

      Are you in a big enough city that has reputable specialists? Do you feel these people are experienced enough to handle an unusual case or are you in a rural area? Not sure why you are having such a problem getting help from them (not cures, but at least understanding).

      Sorry, I have not tried magnets lately. Did try for a shoulder injury eons ago. Did nothing...for me. But who knows. However I have just had my 2nd lower back spasm in less than a week (new to me) and would probably try anything! Was doing better after acupuncture, but just had a repeat spasm getting out of the tub today. Yow!

      I would look into the disability possibility. If you are terminated because of a disabling condition...what else is disability for? Is there a HR person where you work?May come from social security. I've had no experience with it, just know people are on it in this state for depression and that would be difficult to prove other than with a doc's diagnosis. Have you spoken with a social worker? May be free help there?

      I've lost most of my family also and as I've moved several times don't have a host of friends so it is tough if you get sick. Needless to say working 12 hours a day will add to your stress Are you trying to build up a cushion? Understandable, but maybe that is adding to the stress not to mention exhaustion. Have done that also when I was younger, but it really is damaging.

      If your landady has pets borrow them! Seriously, they give a lot of comfort.

      B.

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    • Posted

      Hi B,

      I am near a big enough city but fear driving there due to the shootings and carjackings. There is likely a specialist there somewhere. Dr. did explain the neurontin process.

      Work requires me to be there 12 hours a few days a week and bring work home on weekends. Am actually behind and I have to catch up soon or they will fire me for cause even though I have tenure and rank.

      Docs have said my condition is not disabling even though I tell them I cannot sit w/o pain. We have to make appt to talk to HR. Their doors are locked! They don't even accept FMLA signed documents. You have to threaten them with a lawsuit.!!! It is a crazy place but didn't used to be that way.

      Yes, have spoken with 2 social workers. Hoping to work until I can get Medicare and full SS.

      What do you do for your spasms? Hot water or cold? Icy Hot Patches always helped me and the magnets do as well. Going to do research on liver congestion--a possible source of auto-immune problems. Have a good evening.

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    • Posted

      Oh Beverly! so sorry about the spasms. MAGNESIUM. Are you taking Vitamin D3 or the rest of the nutritional protocol that I worked up for us all?

      So your recent muscle spasms implies that perhaps you have gotten the RATIO of magnesium to the other needed supplements out of whack. If you are taking calcium supplements - stop!

      IN any case, the deficiency of magnesium is a worldwide issue. takes LOTS. until bowel tolerance and the spasms should stop.

      Here is a quick guide I created for myself last year from lots of reading:

      *Remember: When you read any articles that throw around scare statements about the amount of D (or anything else) be sure to notice if the writer knows a dang thing about the required cofactors of Vitamin D.  IF they don't mention the interactivity with Vit. K and Vit. A plus magnesium, it's not a complete enough article. *

      If an article doesn't mention autoimmunity, it doesn't refer to our SPECIAL NEEDS. 

      Test your real need for magnesium, and then feel safe to increase your D - AND be sure to be taking K and A as well. APPROX. RATIOs

      CALCIUM Dr. Thomas Levy, MD: “Calcium is essential for body function and that’s not being called into question. The goal is to expose the real and grave danger of pumping excessive amounts of calcium into our bodies. The amount of calcium needed for a healthy cellular function is infinitesimally small relative to the amount found in bones. Most adults have no need for significant calcium intake and older people already are significantly accumulating calcium.”

      VITAMIN D3    helps regulate calcium and other minerals in our bodies   Using a Baseline of 5,000 iu/day, after getting bloodwork up to ~ 70 ng/ml

      VITAMIN K2    is required to move the calcium from our intestines to our Bones.   Two types; both are needed - MK-4 500 mcg

      MK-7 180 mcg

      VITAMIN A       prevents vitamin D toxicity, and vice versa Ratio of 1X to 3X Vit A to D intake, ie. 5,000 to 15,000 iu

      MAGNESIUM  prevents calcium from lodging in arteries 400- 1,400 mg a day. If you take calcium supplements, the ratio of magnesium to calcium should be 2: 1 MAG. to calcium.

      BORON      helps to activate Vitamin D, and keeps calcium out of the kidneys ~ 6 mg/day

      ZINC               grasps the Vit D molecule to hold it to its receptor on our genomes. Vitamin D must have zinc to get it into bone cells minimum 10 mg extra/day beyond food intake

      SELENIUM 200 mcg - 400 mcg.

      OMEGA-3 FATTY ACIDS

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    • Posted

      Recently watched a Tom O'Bryan FB clip about castor oil packs for liver. Seems easy to do and only the cost of the oil. Check it out. On my way to FM doc now!

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    • Posted

      Hey there again, N.

      Two ideas for the moment: You are hoping to work about 2 plus years to get full social security and you say you need to catch up with your work.

      Have you ever heard of standing desks? or just simply modifying your current desk? with something to raise you laptop or books etc.

      My son-in-law, a microsoft computer engineer, suggested this to me some years ago.

      Buy some of those support hose if your legs get tired.

      do anything to make this work for you.

      The LIVER CASCADE - when you get to reading my two articles that I posted to you earlier, it starts with something a simple as taking apple cider vinegar in water every single morning for the rest of our lives! and Boron/borax ditto.

      I looked up the Neurontin that you and Beverly have mentioned. Apparently PAIN management is an off label use of it... and one article i found said that it didn't really work that well for that.

      IF you are willing to consider another off label use of a drug, i just learned about Low Dose Naltrexone (LDN) this last winter. It has over 30 years of off-label use for a multitude of issues. oh my gosh the anecdotal stories to read online are so heartwarming. It is being used worldwide. Getting it does require a script so you might want to get back with one of the Docs you've been to and take some literature - it's all over the internet. There is even a yahoo egroup for it with very knowledgable people helping out the rest of us.

      The thing is... even if it ends up that you don't have LS - the thyroid issue that you've had for 30 years is an AUTOIMMUNE disorder so anything you do to reBALANCE our system will surely help. You'll find that the list of issues helped by LDN has a whole lot of autoimmune conditions on it.

      Hope this helps, Blessings,

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    • Posted

      Hi Nancy,

      Yes, the standing desks are available but my office is hard wired to the net and they say they will not allow me to adjust the connections so my computer has to be where it is now. The VeriDesk would require moving it, so yes, I have thought about it. Then, too, those desks are pricey, around $1700. I don't think well standing up, especially for deep statistical work.

      Yes, I know the hypothyroid is auto-immune and I have researched it quite a bit. Think my years of overwork and stress have caused the immune system to say to me, "Well the hell with you then, if you won't slow down, we will slow you down." Hah hah.

      I tried the vinegar last year but did not notice any improvement. I know the neurontin is not likely to do much but promised doc I would try it. Anything that affects clear thinking will not work for me to keep the job but will look up LDN. Have some over the counter herbs that help and don't make me drowsy. Am also on milk thistle and detox tea. Am ordering Oregano oil and Carniflora today. Thanks for your concern!

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    • Posted

      OH! yeah...our body (subconscious mind) definitely has its own educational task to get us to wake up... I have learned to laugh at myself each time I get my "come

      upence".

      well now - you really have tried a whole slew of wonderful complementary things. Maybe some of the other things that we've been mentioning her are worth a try or a renewed attempt.

      yep those veridesks are pricey - I wasn't even thinking of the commercial solutions. I don't know what kind of situation you are in office space wise, but since I work at home I started by finding a few encyclopedias to put under my monitor right on my standard desk- ha! Then I graduated to various other solutions, getting a bit more "elegant" each time.

      Einstein was famous for saying that his best intuitive solutions came from lying down! smiles.

      OH! the oregano oil is going to be very helpful! Keep at it, and let us know, N.

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    • Posted

      drn, my first experience with back spasms so don't have a repertoire to fall back on. Using ice packs, hot showers, naproxin but most importantly found my late mother's wee dose valium (need 4 at a time). Lots of pain this AM, barely able to get out of bed; hobbled off to an appt , forgot the naproxin, but by afternoon I was able to sit on a stool and do some weeding so I'm hoping (by some miracle) there's normalcy ahead. If not will see GP next week for an xray as acupuncturist suggested disc issues because of location of inflammation. Ugh.

      But today's BAD news was my long awaited appt with an FM doc turned out to NOT be an FM doc! He suggested I return to see an Ayurvedic practitioner at their office. So back to square one. The office mgr said the FM doc who left now charges a hefty initial fee and $250 a month to be his patient. IOW concierge medicine. $$. This quest may prove to be fruitless.

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