LS...still with me even though I have been MIA on this group

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Hi All,

I have been MIA for some time now on this group...

Unfortunately I still suffer badly from my LS.

What I have been doing these past months (years)...

Femilift - Co2 Lazer...started Dec 2016 every month and then to every 6-8 weeks. It does help even though it is painful and costly. It burns the skin off and I have about two days of recovery (that we call bed days in our house as it is very difficult for my husband and I to even try and explain to our two boys...now 7&8, about my LS when they don't even know what a vagina is)! I had a 3 month break end Nov 2017 to Feb 2018 and I could see how much worse it was from not going regularly. The Dr I go to had never before used it for LS when I started goibg and now he treats quite a few women with LS.

My skin is raw and peels and it is incredibly painful to wee in the first few days (when possible i quickly jump into a shower as it really helps by watering it down). Slowly over the next week or so it heals and pinks up a bit. I get about 3/4 weeks of itching relief which I am very grateful for! Then it is nearly time to start all over again...

I have had three stem cell surgeries (at age 38, 39 and now a month ago at 41). Also very painful (both in my abdomen where they remove the fat cells and where the injection sites are all over the figure of 8 area) and costly. I am fortunate in that my family has been so supportive and my parents have helped pay medical bills as my private medical aid/insurance doesn't cover LS in South Africa. That is a fight that needs to happen with the medical aids as they have to be shown that they have to recognise LS as a legitimate medical condition and not just making pretty...they think it is cosmetic as the surgery involves a plastic surgeon! Makes me mad!!!

In the last stem cell surgery I also had a procedure called Fenton plasty (spelling?) to widen the opening as my perineum had started to form a web of skin or a flap of skin... difficult to explain...(where I had a fatty lump removed last year...could be from a previous stem cell operation as they get the stem cells from fat cells or just bad luck).

Anyway, my Dr cut a large Y shape to remove the skin and to make it more comfortable for me to have intercourse (don't know the result yet as we are still 3 weeks away from being able to try)! The skin she cut away was sent to the lab for testing.

It was very painful as 8 stitches in that area is not comfortable and it pulls which is not ideal! I also developed a huge haemotoma (spelling?) on the one labia which was rock hard and so painful but thankfully has gone down a lot and is much better (the blood apparently takes about 3-6 weeks to be reabsorbed by the body).

I also do the Dovate ointment twice a week. I have not used any soap to wash with for 5 years now and even avoid shampoo/conditioner from washing down there by using a removable shower head. I don't bath at all (can't really as we have hectic water restrictions in the Western Cape). I am very careful about swimming and not staying in a wet costume, wearing tight clothing etc.

I am also on a mood stabilizer and I was taking an antidepressant with a pain killer attached to it (can't think what it is called) but have stopped that recently. It seemed to work for a while but not sure if it actually did or it just had a placebo effect?

I think I have Lichen plantus on the inside of my vagina as it is bright red (almost looks like red pen it is such an unreal colour) and LS does not go into the vagina...need to investigate that. sad

Anyway, I have gone into a few FB groups and found them useful but I haven't engaged a lot on there really. I think for a while I thought if I stayed away and ignored the messages and stopped constantly reading posts/articles it might just help me (like it might go away...hahahaha...not) but it hasn't so here I am...again!

I look forward to catching up with those who were on here with me before and meeting all the new ones...

Leah xXx

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16 Replies

  • Posted

    So sorry Leah for all your pain and hardship. This disease is horrible and it sounds like you have been through terrible stuff. I myself am having a hard time, so far I would say it has not improved and maybe worsened a bit, more fusion to the clitoral region I am afraid. I am happy for you to have a very supportive loving family, you have that blessing. Blessings your way....
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    • Posted

      Hi Linda,

      Thanks for the reply, it is a terrible, horrible unexplained disease...often I have the 'why me' question.

      Sorry to hear that you are suffering too at the moment! I have had quite a lot of fusion of the clitoral area and labias. The most stubborn areas to treat (both with the Lazer and Stem cell operations) have been the clitoris and perineum...they have stayed very white and itchy which is so frustrating!!!

      I hope that yours improves and not get worse. Really feel for all of us suffering this painful could.

      I am busy trying to write my story down and get more public awareness while still staying anonymous as there is very little awareness in South Africa.

      Sending love & strength to you!

      Leah xXx

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  • Posted

    Hi Leah ,,, I’m a new addition to the group. Sorry for all you’ve gone threw. I’m very grateful for this group really helps me alot. The old timers really make you feel like you almost have a LS family lol.... ah.,. Hoping one day LS be recognized as the medical condition it really is. But for that we need to be players in our game and stop watching the game.   Sometimes I feel like calling a certain woman magazine and giving them an interview in this. I’m in Canada and nothing is ever said here about LS... maybe we are supposed to make the cause advance.... welcome back, sure you’re old gals will be pleased to have you back...
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    • Posted

      Thanks Brigitte! I think more awareness needs to be done all over the world. We really shouldn't be ashamed of our condition and I hope that someday diagnosis of LS will be swifter and more action taken by the dermatologist/gynaecologist doing the biopsy as early detection is key I believe...

      If we can get more awareness out there, especially into the medical training then hopefully there will be less woman who have to suffer. I think the rate (and lower age) of woman coming forward with LS is quite alarming so it isn't such a tiny percentage of sufferers as it once was.

      More Doctor's and nurses need to be made aware of the symptoms and the treatments available.

      I was misdiagnosed for nearly three years by my gynaecologist (in the private sector) and on a routine check up with my dermatologist who is practically opposite my gynaecologist on the same floor in the same passage diagnosed me in a few seconds... I plucked up the courage to say to her that I have a problem with very intense itchy skin and it seems the skin looks different...

      One would think (& hope) that if a Doctor can't solve a 'thrush problem' after a few months of different treatments they would seek advice from their fellow Doctors??? sad

      Leah xXx

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  • Posted

    Reading this I'am scared for you if the insurance doesn't pay for it. And don't look at it as disease, be careful your not guinea pig for them at your expense. Use good judgement. Will pray for you.

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    • Posted

      Thanks Diana,

      My main gynae is a friend from school and I do trust her judgement and I believe that she has done a lot of research and has a genuine concern for my condition. I am very lucky to have her on the case so to speak. The other gynae I have who does my Lazer is a colleague of hers and he is so a lovely man who is really trying to help where he can. He charges me a fraction of the normal cost of the Lazer that he does on patients for cosmetic reasons.

      I do totally understand where you are coming from and I probably am a bit of a guinie pig when it comes to some of the treatments but I do like having a plan...hate sitting around with the constant pain doing nothing.

      Really hope some of these plans and treatments pay off...

      Thanks, Leah xXx

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  • Posted

    Glad to here that. It is great to be a friend also to someone so far away. Keep your faith and I will continue to pray for all us. Love Diana
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  • Posted

    HI Leah! and good morning from North Carolina, USA. I'm Nancy, 72 years old, not diagnosed until 5 months ago but now realize I must have had it for some time.  I don't have a partner, but I do have a wonderful 33 year old daughter who has had thyroid removed - cancer - and also is/was hypothyroid and as well now has a bit of urticaria (itchy skin) and a bit of vitiligo (discolored patch) These are ALL Autoimmune diseases - so besides solving this horrible LS for myself I've got a mother's passion for saving her dear daughter from adding another autoimmune disease to her list. 

    I don't know what you have learned about nutrition and this autoimmune disease? I've spent the last 5 months and still reading/researching and adding to my protocol .. which seems to be working.   

    Your story made me soooo sad, Leah. Sad that you have had to endure so much... and I can't help thinking that in your case the "cure" is worse than the disease, maybe. 

    IF you haven't read up here in ages you may not know that LS HAS been determined to be an autoimmune disease, and that most all autoimmune diseases are now being determined to have a similiar nutritional deficiency profile: vitamin D, magnesium, Omega-3's and more.  My apologies - you may know all of this  already.  Perhaps the autoimmune protocol that I posted a few months ago would be helpful in educating your doctors.  I've posted 2 articles, an 11 page paper and also a short list of the supplements.   I think anyone can find them by clicking on my name and then scrolling down to what I or anyone has posted, is that right?

    In any case I'm also finished making the list with the amounts I'm using that several women asked for.  

    Thanks SO much for updating us, Leah. We learn for each other, every single persons posting has been teaching me. 

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    • Posted

      Hi Nancy,

      I have done some reading on the subject of nutrition and vitamins etc in relation to LS but would be very interested in reading your paper and findings and will therefore look them up.

      My other autoimmune disease is Hypothyroidism.

      I don't believe the cure is worse then the disease for m...yet and hopefully I will recognise it when it gets to that point. I am only 41 and hope to still have an active sexual relationship with my husband ( we have been together for 17 years) for many years to come so I won't be giving up some of the treatments that I believe are helping me at the moment just yet.

      The Lazer is intensive and requires a lot of mental strength to keep going back knowing just how painful it is going to be...it also requires a lot of physical healing strength. I am prepared for it and do believe that it is helping enormously. My gynaecologist who does it has been tracking it will photographs and the evidence is clear in the pictures that it is helping.

      Thanks for your insight, there is such a great variance of this condition from one person to the next and therefore it is great to get feedback from everyone so it is much appreciated!

      Leah xXx

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  • Posted

    Hi Leah, I hope your not offended but I don't believe constant laser work every month or so is the way to go with LS...The main problem for LS is diet and lack of certain vitamins etc.   

    With regard to the Fenton plasty, that sounds interesting, and I do understand why you would go ahead with that.  Some of us have a band of skin at the very bottom entrance to our Vjays and it is literally like a roadblock to sex!  I have the same problem.  I would be interested to hear how you find things when you are finally able to have sex again.

    The colour of your Vjay is probably okay as I asked this very same question to my Gyno and she pulled out her bottom lip and showed me how red it is inside and how that very same  colour is normal in ones Vjay

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    • Posted

      Hi, 

      I am not offended at all by any comments as I believe we are all trying to find our way in this LS hell! I do however believe that if I had not had laser as often as I did over the past 18 months my doctors would have advised a vulvectomy already...the reason being is that the laser literally burns the LS skin and forces the body to heal it by doing this (I have copied and pasted off Google to save me having to write it all down)...

      'Most of us take wound healing for granted. If you get a small cut, you may clean and cover it with a bandage, and move on with your life. Yet under that bandage (or in the open air), the body orchestrates a complex cascade of events designed to heal wounds big and small.

      Stopping the bleeding (hemostasis). When your skin is cut, scraped, or punctured, you usually start to bleed. Within minutes or even seconds, blood cells start to clump together and clot, protecting the wound and preventing further blood loss. These clots, which turn into scabs as they dry, are created by a type of blood cell called a platelet. The clot also contains a protein called fibrin, which forms a net to hold the clot in place.

      Inflammation. Once the wound is closed with a clot, the blood vessels can open a bit to allow fresh nutrients and oxygen into the wound for healing. Blood-borne oxygen is essential for healing. The right balance of oxygen is also important — too much or too little and the wound won't heal correctly. Another type of blood cell, a white blood cell called a macrophage, takes on the role of wound protector. This cell fights infection and oversees the repair process. You might see some clear fluid on or around the cut at this time. That is helping clean out the wound. Macrophages also produce chemical messengers, called growth factors, which help repair the wound.

      Growth and rebuilding. Blood cells, including oxygen-rich red blood cells, arrive to help build new tissue. Chemical signals instruct cells to create collagen, which serves as a type of scaffolding, and other tissues to begin the repair process. Occasionally, you see the result of this process as a scar that starts out red and eventually dulls. 

      Strengthening. Over time, the new tissue gets stronger. You might notice stretching, itching, and even puckering of the wound as that happens. Within 3 months, the wound is almost as strong in its repair as it was before the trauma. The entire healing process might take a couple of years to complete.'

      https://www.hopkinsmedicine.org/healthlibrary/conditions/surgical_care/how_wounds_heal_134,143

      So I am wounding myself in order to heal myself...another thing I never ever thought was something I would have to do in my life! The strengthening part doesn't really happen as much as the time frame between every laser is probably too short to get the full benefit of that but unfortunately we aren't talking about normal skin here. sad

      The Fenton plasty was necessary especially because not only did I have that band you speak of but I also had a lypoma (lump of fat the size of a grape) removed from that section last year and by removing and stitching the hole that it left behind closed it made that band even more prominent. I really hope and pray that it is going to make a difference!!! I promise you I will let you all know if I have comfortable, enjoyable sex again (you might even hear me shouting it from the roof tops of Cape Town. wink

      I have unfortunately seen my Vjay far more often then I ever thought I would over the last 5 years and so I have a pretty good idea of how it looks and how it has looked over the years. The red that I have more recently seen was not like that before, so either the skin has just changed or I possibly have lichen plantus...I am not taking any chances and going to investigate because of a misdiagnosis and not having early detection with my LS I am in the position I am today...

      Leah xXx

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  • Posted

    Hi  Leah, I am relatively new.  You have done a lot of interesting things and it made me realize we are all somewhat guinea pigs for LS.  I have done some of the injections.  It’s hard to tell how well it works because how bad would it have been had we not had them?  You never know.  But hopefully all our efforts are adding up to something important.  Welcome back!
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    • Posted

      Hi Pat,

      Thanks for the message! I think like with any condition/disease that is relatively new (I know it was first diagnosed a long time ago but it is a 'new' or rather 'more known'/'diagnosed' condition nowadays) that Doctors all around the world are facing with patients and trying to figure out different cures or at least ways of slowing down the rate of the infected areas there will be an element of guinea pig to it. We have all kinds of medical advancements and technology now that they did not have all those years ago...

      Many years ago I had all kinds of tests done, including blood tests, and I didn't have any deficiency in any vitamins and minerals. What I did have was hypothyroidism, I come from a higher income bracket in our society/country and the only reason I am saying that is that we have always been able to afford and eat a diverse range of foods from all food groups.  We have the most amazing fruit and vegetables in the Western Cape, a lot of it gets exported all over the world and we definitely don't get the best of the crops but we do get amazing fruits and vegetables here. We also have excellent fishing grounds and get awesome fish. We have great beef and pork... what I am really trying to say is that I eat all of those and seeds and nuts etc. and I do not believe that it is mainly diet and a lack of certain vitamins and minerals that has caused my LS...that's the bottom line. 

      Yes, absolutely, having a healthy lifestyle, eating correctly, doing exercise, not smoking or drinking too much or at all...but I find my glass of wine is really necessary at times wink ... doing all those things is going to help your body and your immune system be in the best condition that it can be in order to fight off any illness, disease or autoimmune disease but I don't believe that a lack of some vitamins and minerals alone is the cause of us getting LS.  It must also surely have something to do with an overactive immune system, genetics/family history, predisposition to getting it, hormones... The pharmaceutical companies would love us all to believe that it is only a lack of vitamins and minerals...

      Anyway, for now I am quite happy to be a LS guinea pig and hopefully along the way I get some much needed relief from the incredibly debilitating itch.  I might even be able to be with my husband, who I love very much, in a more physical way, which is both necessary and important for both individuals as well as for the relationship. I might be able to swim with my children without worrying what the water is doing to my vagina. I might be able to sit and watch athletics day without first having to apply an anaesthetic cream because I know that I am going to be in a position for most of the day sitting on a stand and I can't hop up every 10 minutes to adjust my clothing because it is hurting me. I might  be able to wear clothing that looks good and not look at pants in the shop and think...that might be a bit tight around the V area. I might one day buy a new bike as I gave my one away to a charity...I don't have use for one at the moment!

      If I get a chance to get rid of some of these debilitating things in my life...and not have LS consume all aspects of a life I love I will be so much happier for it!  I honestly believe I have an awesome group of Doctors (which include two gynaecologists, a vulva specialist, a dermatologist and a psychiatrist) who, with me, are trying to find some way for me to live a less painful more enjoyable life!

      Sorry so long...I do however feel much better after putting it down in words and reading it! 

      Leah xXx

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