Diagnosed with LS 2 days ago. So afraid. So depressed. Any info is greatly appreciated.
Posted , 18 users are following.
I have had excellent vaginal health up until a month ago. What started as a suspected Yeast infection has ended in a diagnosis of LS & Vaginal Atrophy. I am a 3 yrs post complete (minus cervix ) Hysterectomy due to complications from Colon surgery, 40 yro, happily married, healthy sex life, Woman. I have been very "willy-nilly" about taking my estrogen and assume thats at most to blame for the atrophy but the diagnosis of LS has left me utterly floored. It seems to be very early and mild but the horror stories and photos over the internet are so disheartening; I feel absolutely doomed, forever. I feel as if my Womanhood is gone and that my Husband will lose interest in a Woman who is unable to be intimate even though he promises that isnt the case.
I am consumed with thoughts of it, day and night . So many questions.... So many fears....
One of the symptoms I've been having this past month is an overwhelming amount of pressure in my Lady Parts. Can anyone tell me if this is normal of LS? Or possibly the Atrophy? I started steroid cream and estrogen cream ( and changed over to a patch so i won't forget ) and am Praying something gives at some point. Can anyone please tell me the normal symptoms of LS (and atrophy if anyone is familiar)? I appreciate any feedback and any responses at all. I feel so alone and so utterly useless It feels as though my GYN handed me a Life sentence, without Parole. Thank you all, in advance
0 likes, 102 replies
beverly52803 Ifeellostnow
Posted
Feeling Found Now, I hope! There are a good number of us here and we all have different stories, different symptoms, different remedies. A year ago I went to the gyn with a fleeting internal itch. Next thing I knew I was looking at those incredible photographs of LS in the books the doc brought in for me to peruse. Part of my response was shock, part complete disbelief ! Fortunately for me I don't have the discomfort most have, but I'm not alone in this. However, that means I can't tell what is going on and I truly can't see anything much. I had been diagnosed with AV three years prior but did not choose to use a hormone cream because of family BC issues. That was a big mistake. But as I said I wasn't uncomfortable. Figured I could just age without issues. Wrong. The vulvar skin specialist said mine was brought on by too little estrogen.
So now I am using a steroid ointment and a hormone cream. Read back on these older posts & you'll find mention of all sorts of individual remedies & discussions which will be helpful to you. Everyone seems to have rather unique ways of experiencing LS and they find unique ways to feel better. In my case I got great results with the two meds right away which fooled me into thinking it would go away. Seems it's still lurking, but I'm more or less determined to find a way to have it not loom large. Truly, your life is NOT over. Everyone will tell you stress is what exacerbates it more than anything, so you've got to calm down, remind yourself there are far worse problems you could have and you will manage this as it comes.
You can chill the coconut oil (be sure you are buying organic) to make it extra soothing. But you'll read some women are allergic to it so try a little of this and a little of that. You can always use the coconut oil for cooking. Drinking alcohol is not a good idea so you might want to find some alternatives if it helps you to calm down and maybe have a few laughs with your husband.
BTW I understand your feelings about FB. I haven't gone to that site either. There's plenty on here for me.
sue162 Ifeellostnow
Posted
I have the same symptons as you Ifeellostnow, Mine is definately post meno. I used the clob but things slowly disappeared. I use the clob twice a week as once a week areas of the majora were getting shiny so the clob seems to keep that at bay but it didnt stop things melting away. I agree its so upsetting. I think my skin had thinned due to lack of oestrogen too. I hope the cream works for you x
Ifeellostnow sue162
Posted
thank you so much for the encouraging reply. I think that mine is definitely hormone related but then again I question every single thing I’ve done in the last month and if I could’ve, shut up, would’ve… I guess that’s all of us though? I hope the cream works for me too and yes you are right it is so upsetting sometimes it’s all I can think about it’s consuming me. Today I’m trying to do things around the house and listen to some music and be more my normal self to see if that helps. What did you mean by things melting away?
Ifeellostnow sue162
Posted
My ipad autocorrected "should've" to shutup. forgivr me. but.... it did make me chuckle...
RosieView Ifeellostnow
Posted
I was diagnosed two years ago, but I'm sure I've had LS for many years.
beverly52803 RosieView
Posted
Rosie, I think you are the first to mention having had PRP injections. I have contacted mainly spas in my area and one gyn out of state who give the shot. One MD who had her own spa claimed to have the injection without laser treatments was a waste of money. The MD out of state said unless I had a serious case of LS there would be no sense in getting it, For those serious cases she said a series of 3-4 injections are required and they should be administered differently than the O-Shot .
Most of the spa people hadn't a clue about LS. I found a nurse practitioner who had never dealt with it but was willing to give the shot and a nurse who teaches people how to administer it who was also willing to give me the shot. There was no mention of a special protocol.
Most charge around $1200 . Those that thought it was most effective along with other treatments charged a considerable amount for those procedures.
Was yours given at a spa? Was it administered by an MD , nurse or a spa technician? Was there a protocol you had to follow before and after the injections and was the price in this range?
Looking forward to your answers as I am still trying to decide if I should have it and who I should trust to do it.. Thanks.
jackie15098 Ifeellostnow
Posted
You were not handed a life sentence! You are a woman and we are able to handle anything and everything!! We are tough that’s why we were made the women of this earth. Are you old enough to remember the song from the 70s by Roberta Flack called, I am woman?
beverly52803 jackie15098
Posted
jackie, that would have been Helen Reddy 😉
Ifeellostnow jackie15098
Posted
Yep, I know what song you're speaking of, tho I didn't know who the artist was. I so appreciate your encouragement!
beverly52803 Ifeellostnow
Posted
Thanks, Nancy. What about vitamin levels? I can't get a clear answer online if standard blood panels indicate those levels or not. If not are we supposed to ask for a specific test?
I think I may have already posted that I called my GP's office to see if my thyroid anti-bodies were being tested and she told me only specialists run those. I had already requested to have my thyroid levels checked which my GP ordered, but it was the TSH only.
It's pretty frustrating.
beverly52803 Ifeellostnow
Posted
sarb, I asked my GP for a thyroid test shortly after getting the LS diagnosis. I did wonder why the gyn hadn't ordered one. Unfortunately the GP ran the TSH test only. Seems they need to run the antibody test which gives more specific info as can have issues that don't show in the TSH test. This baffles me completely. It's as if doctors would rather NOT know. I have actually suspected for years that I have thyroid issues, but would be told the TSH numbers are fine so no problem.
If you read up on this from a Functional Medicine standpoint they think you must identify what is causing the antibodies . I can hardly explain it because I hardly understand it and not finding a doctor that practices it isn't helping me at all. If I were you I would go with as much info on thyroid that you can gather before asking for the tests.
good luck.
sarb73328 beverly52803
Posted
Thanks Beverly. What symptoms would I have for over or under active thyroid? I will specifically ask for the TSH test.
beverly52803 sarb73328
Posted
You'll get plenty of info by googling. We are not allowed to include links...unfortunately.
Guest sarb73328
Posted
HYPO: Underactive, sluggish, weight gain, cold
HYPER: opposite, heart racing, losing weight, anxious. can't sleep.
I would ask for antibodies to the thyroid. At least then you'd know. Tell you doc that because you have LS and because 67% of those with LS have antibodies attacking the thyroid that you want to know whether this is you too. Then you want to make sure, if you have hypothyroidism, that you get on a quality drug, levothyroxine or synthroid.
biscuit
sarb73328 Guest
Posted
Thank you Biscuit. I will ask but can't say I have one or other of those symptoms - more a cross section! Anxiety, weight gain, sleep disturbance. Will see what doctor says.
Guest sarb73328
Posted
Anxiety will make you gain weight. Can you stop eating after 6 and walk outside after supper? That has helped me
beverly52803 sarb73328
Posted
sarb, I also don't fit into one category so I've never been able to figure it out. I'm sluggish half the day and can get cold easily, but then I can't take anything over 82* without feeling like someone has pulled the plug. I am the poster child for not being ale to get enough sleep. Have gained weight since not working full time, but that may be more circumstantial than a thyroid issue. I had the racing heart thing just 2 days ago. It causes me to cough when I have it.
Based on the fact that LS appears to be accepted as an AI disease I want to know for sure my thyroid is functioning properly. and I do think it's something we all should have tested. My gyn felt my thyroid the last time I saw her (she's never even mentioned thyroid) and my GP feels it each year.
sarb73328 beverly52803
Posted
Yes I want to have test to make sure thyroid working properly. My weight gain has slowly occured over years and I am sure is due to overeating and nothing else. My temperature control has never been great since menopause and my sleep is always disturbed by mad bad dreams. I swim, walk (when arthritic knees allow) do pilates and yoga which all help a little. But the knowledge of having LS now for the rest of my life is depressing.
sarb73328 beverly52803
Posted
Beverly - I have realised that I said I would ask for TSH test here - but meant I will ask specifically for the anti-body test. Thanks for the PM and the link - I will read it.
Strikes me that the reason docs don't do anti-body testing as matter of course, could be to do with the fact they can do nothing about it? There are no remedies for the body attacking itself in this way.
Nancy_K_B sarb73328
Posted
HI Sarb, interestingly just yesterday a friend called to share about going to the doctor and asking about her weight gain - she's 63 - her GP, a woman doctor, said it is because of LOW ESTROGEN.. and suggested that she get some supplement - I'll have to ask the name again - that has black cohosh and St. John's wort and something else in it.. dang I shoulda known this years ago - argh. but I think I"ll do the ame and see if I an slowly reverse this belly.... smiles.
Nancy_K_B sarb73328
Posted
Uh.. Sarb, have you had a chance to read my nutritional support list I worked up last year that are all helpful for autoimmune diseases? I definitely credit my comfort level with LS to taking that whole slew of supplements this last year. I've come to realize that my body KNOWS it within 3 weeks if I run out and don't replace the Vitamin D3 for a bit ( I don't which other ones are critical to my bodies needs but hey - no pain = happy camper.
beverly52803 Nancy_K_B
Posted
Nancy, I still can't go back further than 6 weeks re your posts so I can't get back to the list of supplements. I think biscuit couldn't get to it either. Something seems to have changed re access on the site.
sarb73328 Nancy_K_B
Posted
Yes thanks Nancy, I read your list and research and as a result am taking many of the vitamins and i am sure they are helping. Thank you.
sarb73328 Nancy_K_B
Posted
Beverly - sounds interesting. Please let me know when you remember the name! Although I know simplest way for me to lose some weight would just be to eat less!
Guest Nancy_K_B
Posted
Weight around the middle accumulates after menopause, I can attest to that but it's not only due to lack of estrogen. Many factors: we slow down, for one, gradually. We eat more food we don't need. (Well some of us ) We tend to exercise and go out less, especially I'm finding after 55. As my father said, "If I had known getting old was going to be this bad, I wouldn't have done it." There is always the option of getting desicated thyroid. A compounding pharmacy can produce it if your doc will order it. Most insurers won't pay for the real stuff, only the man-made Big Pharma version.
Nancy_K_B beverly52803
Posted
HI Beverly - that is so weird yeah I think they really did a number on their website.. making it LESS useful. 20 months ago when I was doing my initial learning curve I could read back 6 years of women sharing their experiences, Wonder if they just ran out of bandwidth??
ANyway, here is the link, Biscuit needs it too. It is 15 months old and I've ony added a little bit. I'll try to post an update soonish.
https://patient.info/forums/discuss/nutritional-support-protocol-for-autoimmune-diseases-636963
argh it's not he best but really the super important ones on in here.
Nancy_K_B beverly52803
Posted
Oh, bev and Biscuit and anyone else who is interested. My nutritional protocol or autoimmune ( with special attention to skin issues) was built in excel ... SO much easier to read than what come up here.
If you would like please message me with your email addy and I will forward the excel file. grin, COLOR-CODED TOO! makes my heart happy!
Guest Nancy_K_B
Posted
I am good with the one you sent but then I have more computer options than most.
Thank you for all you do for us on here.