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Sexuality and lichen and a few thoughts and queries

Posted , 5 users are following.

sky23
sky23

Hi. Lichen sclorosis hits hard..simlpy because in my experience it does not just hit a body part..it hits at the core of who you are..a female...an emotional caring loving sexual being. I found the hardest thing to cope with was the loss of choice. When I say choice, I mean the choice to have open, natural spontanious joyful sex..no pre-preparation..no agonising of mind on what to say to your potential partner..no fear of being physically hurt or being physically and emotionally rejected. 13 or 14 years ago I made the choice to cut all relationships out of my life. I have to say that I was seeing people and I was truthful to those people(males) as to why. Do you know they were great..they could immediately put themselves in my shoes..and they are still supportive friends of mine. Now it was very different telling women..they reacted more with fear and aversion(bar a couple)..not a good experience..most wounding... It's a bit late now to say casting away relationships was not the thing to do..I guess that was how my grief was dealt with..or not maybe..Thing is there is more to sex and relationships than sexual penetration..and I guess there is more to be said for giving pleasure to another person in ways that do not give that much back to the self..as a selfish hedonist it has taken me time to work that one out. What has changed my mind..my own trigger was a book..a biography on Wallace Simpson..someone born without full female parts..and what a life this determined creature made for herself..running off with the King of England was no mean feat..So what I am trying to get across here is finding attitude and means to live differently..let's avoid the sackcloth and ashes and let's have a think..XX

4 likes, 47 replies

47 Replies

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  • hanny32508
    hanny32508 sky23

    Posted

    Sky, I thank you for expressing the above.  There are indeed other ways of still feeling respected female and loved.  Though it may take some time for couples to come to grips.  It took us a while to figure out and accept new ways. Indeed, LS hits the whole being, physically and mentally.  And that takes time to somehow overcome.  But certainly possible.   
    • sky23
      sky23 hanny32508

      Posted

      But sounds like you did it Hanney..or you are on your way..that is so positive..and it gives hope and direction to those still stumbling..thanks againX
  • suzanne00
    suzanne00 sky23

    Posted

    Active LS is difficult with sexuality.  I hesitated to write anything here because I don't feel like I have this one figured out.  I just started having symptoms this past year or so, and now sex is almost unmanageable.  Since a divorce from a long-standing marriage, now I have a long term partner in a better relationship, but we haven't decided on a permanent commitment yet.  Sex is pretty important to him and I already haven't felt like I've been such a great package deal with multiple health problems and issues with food restrictions that make eating out and travel almost impossible.  And now this. This was a nice part of the relationship and worked pretty well. Now, we can't be spontaneous, or free with positions, and the whole thing is just darn uncomfortable, if not painful or impossible. I know he worries about hurting me. Now I also wonder if I am damaging the tissues further by forcing the issue.  Geez.  This does not add to my "marketability" with him or anyone else. Sure, I would like to know that I am loved no matter what, but realistically, I don't know how many men would sign up for such a (now) difficult sexual relationship, unless they also have problems in this department (my partner does not, which at our ages, used to be a bonus).  So, I'm sure that I'll get through this and maybe even grow, but I'm kinda tired of challenges, losses, and life lessons.  I can even feel discouraged and wonder why everything has to be so darn hard at times.  I had a long life with bad health problems due to undiagnosed celiac disease and other health problems.  Now that I am getting a handle on my health a bit, out of a difficult marriage, and almost having raised my kids, and I am ready to live a little.  But it seems that it's just one thing after another, right?  Perhaps this is life...I'm hopeful that I can see the improvement in LS that others have seen, in time.  --Suzanne
    • sky23
      sky23 suzanne00

      Posted

      Hi Suzanne. I have been in your shoes..I gave up .change is inevitable with this disease. But...it may be we have to go a different way around this whole problem. Actual penetration may have to be kept to a minimum..as with any friction on our skin..no, this is about whether we can find ways and means to actually give our partner pleasure without to much stress on ourselves....and it has taken me years to realise I could have done this..its just I was too sunk in grief to try. and I wish I had..xxxxx
    • suzanne00
      suzanne00 sky23

      Posted

      Hi Sky--Thanks for the encouragement.  I can understand the grief part.  I think that I've had a lifetime of unbalance in the "giving" department, and more recently I was just discovering that I could receive too, only now I can't anymore.  This really stinks. I know that I will find a way to adjust, but I really wish that I didn't have to.  Sometimes I get tired of so much giving.  Sorry that I feel mopey tonight.  Still in process with this.  All my best to you.  

      --Suzanne 

    • marey
      marey suzanne00

      Posted

      This seems to be a very deep and profound issue for you Suzanne...and thanks Sky for all the thought you clearly put into raising this. Love you both and admire xx

      I was listening to something about karma the other day and one useful thing I was reminded about was that with the really hard, challenging, exhausting and full on times....karma can be operating. It can operate in an almost accelerated way for those who are fast tracking to enlightenment (whatever that may mean)  almost its for those that can take it because they are, or have previously, committed to a higher more exaulted  intention in life (or rather lives). After this clearance of so much previously acquired negative karma...the slate is wiped cleaned through the process of suffering.  And also how we handle it...for example with fortitude, generousity towards others, compassion, thoughtfulness, all those qualities still being exercised whilst experiencing profound and inexplicable suffering.

      Could this be about an opportunity for personal growth? And on different levels for each of us? For example with you Sky (thoughtful, reflective and academic) might it be that you are gaining insight into the power of giving inconditionally...as you mention this? Whilst you Suzanne...being so well versed in that (!!!) and I think we've all seen it in you ...you are so very kind and generous (right everyone?? xx) that there's a completely different thing operating for you...tho both have the same disease (and what's my karma of course I ask) something is operating which pulls us together. Perhaps we are each others teachers and are so lucky to have found the lessons we need all in one place.  xxxxxxxxxxx

    • hanny32508
      hanny32508 suzanne00

      Posted

      Very valuable sharing, Suzanne.  This is also LS.  Not pretty, and a sad reality.  The mental strain is enormous. And... hubby, if there is one, has to be willing to work hard too and make adjustments and be creative.  Plus -  both  parties have to keep respecting each other.  

      I know that for a while I acted as 'the lesser one'.  As if illness would be a choice. Better to 'stand tall'.  Though that is easier said than done.

      Health challenges are simply not easy.  At least here on this forum we can talk about it.  Thank you, Suzanne. 

    • suzanne00
      suzanne00 marey

      Posted

      Thanks for the thoughts and good will.
    • suzanne00
      suzanne00 hanny32508

      Posted

      Thanks, Hanny.  I'm hoping that you too are hanging in there while waiting for some relief in the coming days.  --Suzanne
    • suzanne00
      suzanne00 marey

      Posted

      Thanks, Marey, for your support and encouragement.  This suffering is a  fast-track to spiritual growth, eh?  I'll take it!  While I know that everyone suffers a great deal in life, sometimes I think that there are those people for whom it is worse, even though they can be really good people (my brother, for instance).  While some people see spiritual meaning in this, others do not.  After growing up in a heavily Christian family, my mother concluded that there is no God because He would not have allowed such suffering as my brother endured.  Sometimes I think that suffering is random.  Other times I do believe that we are here to grow and love, and that life does have spiritual meaning.  I guess we will all find out later, right?  Funny how a little discussion about LS turns into this!  Thanks for your thoughts and support.

      --Suzanne

    • marey
      marey suzanne00

      Posted

      hi suzanne

      when replying to you earlier I had not read the input from you about your brother ...but was responding to your later reply. I don't think I would have launched into talking about karma if I had seen that.

      so first of all apologies for being all in the wrong order!

      The loss of your brother.

      Oh Suzanne. I am so sorry. 

      This is unbearable.....I cannot begin to imagine your pain. I am really so sorry. And the circumstances. The anger that you and your family must have felt. Your mother's loss of faith is so understandable. How is she now? Is she still with us? are you close? Has she made some sort of peace with her god?

      You have obviously worked hard on discharging the grief, anger and loss you have felt since you are able to recount events...but we are here if there's more. there's always more isn't there?

      I felt really very agitated when you told me about the blood transfusion as part of the tragedy. there is synchronicity here. can you tell me the date of these events please? Gosh I wish I had known you then. There is so much harm from western medecine and its failure to listen particularly to other cultures or even just other perspectives within our own culture. a very narrow radar/receptivity. yet armed with such high level, weapons of reaction.

      you will remember that there is a religious group who spurn blood transfusions? can't think of name for mo...brain fog!!..can any one help with name of this group?? anyway they were at the forefront then as a child was forced to have a blood infusion against parental consent and against the family's religious belief. in that situation there were no consequences. thereafter during the aids thing late 70's early 80's...is that right?  ...the wife of a colleague of mine (the colleague and i both worked in a whole food store) had given birth. She suffered  near fatal blood loss postpartum...and a transfusion was indicated. the colleague sought my advice as he had misgivings ...which i endorsed ...about agreeing to a blood or even a platelet transfusion...  normal saline was given instead to address the volume crisis  whilst the husband had to make a  more long term decision about what to do. we devised a strategy using nettles to promote red blood cell replacement and he gathered these from the local cemetry every day and made a strong tea . circulating blood plasma volume was addressed by  the fluid transfusion and this was enough to restore consciousness so that she could swallow....she pulled through. Thing is this was Hackney...an area popular with the gay community...infected blood was later indentified in the banks and some hemophiliacs subsequently died. We knew none of this then but had only our instincts to go on...and the thought as to why at least one group spurn blood tranfusions. if she had had a blood tranfusion she would almost certainly have died from infected blood. 

      the knowingly proceeding with infusion in your brother's case is unspeakable....this was an inter-departmental problem or something? did you glean more about how this happened? I am so sorry. so sorry.

      thinking of you during this pause.

  • sky23
    sky23

    Posted

    Hi everyone..thank you for your replies..we certainly have and are dealing with heartache..it's very underestimated I think and it is as though we have been parked somewhere that does not get noticed... I guess we are all a sort of crutch for each other..but we brighten the way forward a bit ..even if it is only a couple of feet at a time.XXX
    • marey
      marey sky23

      Posted

      yes ...we are each others sunshine!!
  • suzanne00
    suzanne00 sky23

    Posted

    Hi Sky--Loved reading your comparison to being parked somewhere, not being noticed, and moving each other forward a few feet at a time.

    From what I've gleaned, it sounds like a lot of women here who are trying to have a sex life are making do without actual penetration.  I wonder if my perception is accurate. Is that something that even with remissions remains problematic often with LS???

    Still trying to figure this out.  --Suzanne 

    • hanny32508
      hanny32508 suzanne00

      Posted

      Suzanne, with me penetration is no longer possible and I don't expect that to ever change, since my diagnosis came so late.  But their is still touching and caressing (if that's the proper English word)  hugging, holding.  And I'm amazed how satisfying this can be.  This was unexplored 'territory' for us.  And no, it's not the real thing.  The situation is such that there are no other options.  It has been hard to learn and finally come to this different form of intimacy.  So far so good.    
    • sky23
      sky23 suzanne00

      Posted

      Well we have to ask them about penetration or advice on it. Now how to do that is a bit tricky. Your last sentence would make a good new posting..I don't know on the response..but it is questions like this one that really need to be aired and responses considered.XV
    • sky23
      sky23 suzanne00

      Posted

      Just before I quit I found that I could still endure penetration but not a frontal one which irritated my skin too much. However slight skin spitting was always there and could occur up to 2 or three days after. But I think with me this became a sort of mental thing. When I had oral lichen planus I went off mouth kissing and to this day cannot stand it..it is as though I cannot breathe and it is a form of torture..I think I would rather risk the sex than the kissing somehow it is less personal..but don't ask me why..clueless!
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