Trying to raise awareness

Thank you thank you thank you! For all your work with public awareness. There is also a Facebook page for LS but it shows that I belong to it on my Facebook which makes me uncomfortable. I have told all my women friends what I have but I don't really want casual friends to know. I am a bit of a private person, but I do believe that the medical profession and all women should know about this. We have to help support each other. I am very lucky to have a wonderful husband that understands. He is 7 years younger and I was so worried this would hurt our relationship but so far it hasn't. I was a very sexual person but now everytime I have intercourse I bleed and it hurts. Plus being menopausal doesn't help. I am 65 and still want to have a sexual life. It is interesting how doctors that I have encountered here in the US don't see that as a huge loss. I guess they figure I am old so I shouldn't care, but I do....

I had the opposite experience. The (male) gynae was totally uninterested in the fact that I was in pain. He blanked out when I was trying to get across to him that LS comes with a process of grieving, for your sex life, your femininity, your changed relationship. He couldn't care less about any alternative therapies that I'd found helpful. But when he asked me how often I was having sex and I said 'I'm not,' he suddenly came to life and said 'well that is a problem...' Grrrr.

This is so familiar, B of S. Gynaes and GPs can be very casual. 'Grieving' is a good word to describe our feelings when faced with this deforming disease. When I tried to discuss the psychological impact of LS  with my GP, she said doctors can only deal with the medical side of things and that there just aren't the resources available to help with the mental aspect of many diseases, not just LS. I guess that is true and that is why it is important to have this forum. She was interested to hear about Borax however. I hope you get that letter published.  - Sarb 

I got referred to a councillor before they knew it was LS, they thought my pain was psychological. I had two sessions of 'How does it make you feel?' and quit. The low point was in the second session, when I told her I had had a bad reaction to the HRT (she was also a gynae) and she said 'Oh it doesn't do that!' (subext...you're obviously highly hysterical...), and when I showed her the symptom leaflet with excessive nausea clearly listed, she said 'yes but it's under the "rare" column so doesn't happen often, so can't be happening to you!?!?'

I despair, I really do.

Thank everything for this site, and all you lovely sane women.

I can not believe you were referred to a counselor because your doctor dismissed your LS as a "psychological" problem. I am infuriated to hear that!!! B of S, I am sorry you had to go through this, and that you had to deal with such incompetence from both your doctor and your counselor, by the sounds of it.

I will share a similar incident. My understanding, from everything I've been reading on this site, is that hormonal problems are often associated with LS and, in my case, the onset of LS was preceded by severe hypothyroidism for approximately three years. While I was going through that period of severe hypothyroidism I was feeling deeply vulnerable. In my compromised condition, I visited my doctor and intimated that I might be depressed because of the hypothyroidism. She responded with an emphatic "No," that hypothyroidism doesn't cause depression. (Funny, because everything I've read -- and I've read a lot -- lists depression as a possible side-effect of hypothyroidism.)

Anyhow, when I was at my lowest, sickest and most vulnerable and I confided my fear of depression to my doctor -- I was left feeling alone, crazy and bereft because she responded by dismissing my own personal experience and doing nothing.

I don't know if a validating response on the part of my doctor and some action to address the depression might have prevented the LS. But who knows? Maybe it could have. While severely hypothyroid and depressed, I was not taking very good care of myself. We know so little about LS that depression, stress, isolation and compromised self care may indeed be factors.

Anyhow, my apologies for going on... it's just that I felt for you when I read your post, B of S, and thought I would  share part of my experience.

I am all for increased awareness about LS and have my thinking cap on...

Oh I am so sorry that you had an awful experience too. A big hug to you. I wish we were all in the same place and could go to the pub together and have a good old chat. Wouldn't that be fun...?

Yes wouldn't that?!!!

Yes, that would be wonderful. A pub with comfy seats... lol.( ;

Are you serious? I'm sorry you had to be on the receiving end of that.

Wouldn't it be great if we could attend our gyno appointments with a group of seasoned LSers from this site? Then we'd have a chorus of support -- and the doctors would learn so much!

This is just my opinion, but I don't see why any man chooses to become a gynecologist to begin with. The only motivations I can come up with are intrigue, money or perversion. Of course they could be good or bad at their job regardless of their motivation. On the other hand, simply being a female gynecologist doesn't mean you'll necessarily be sensitive or great at your job either.

When I was in my 20s, I had to see a specialist for a colposcopy due to a pap smear that showed some abnormal cells. On my first try, I was asking the male doctor some questions because I was quite anxious about the whole thing. He told me not to worry, that the vagina is tough... so tough that you could beat on it and it would be fine. I was so appalled at what he'd said, I left the hospital like a skittish squirrel without having the procedure done. On my second try, I specifically asked for a female doctor. I was splayed on a hospital bed in a large room with bright lights on my privates when the female doctor asked if she could bring in a male intern to watch. Ummmm... "No thank you." I could see him off to the side waiting for his cue from the doctor, and he was old! I thought why is this old guy an intern? Anyway, the female doctor was frustrated at my response and, with one hand on each of my knees, she slapped my legs together and told me I was the fifth one today to refuse the intern. She then went over to him and told him he could stay in the room behind the curtain and listen. Then she did the colposcopy.

That was when I learned a female doctor is not necessarily nicer, more sensitive or better at her job... although her motivations may be. That whole experience was somewhat traumatic for me, and I felt deeply disrespected. It may have happened half my life ago, but I still remember it vividly.

Sorry to go on, but I appreciate being able to describe this situation to you, a group of women who have sensitivity and personal experience in this area.

Thank you for your time.

Metta

How humiliating for you Metta it’s this bliddy ugly LS it puts us and our vaginas right in the spotlight and not in a good way !! 

On a lighter note, however I was being examined quite thoroughly by a very charming lady consultant at QE women’s in Birmingham many years ago

Obviously we all have our ways of distracting ourselves from the rummaging going on down below. 

I was talking to the attendee nurse about my dog Theo  when Mrs Byron told me that’s it get dressed biopsy over. 

I went to get up, I turned my head to the right and up there on a television screen was a close up of my ‘ladyship’ frozen in time !! 

For a moment I was totally taken aback and let out a cry of Ooohhhh or something. 

All the women present turned looked and in my embarrassment I said, “mmmmm glad you got my best side “. 

Kinda broke the ice and we all laughed together in a mixture of hysteria and pity.  

They understood those woman but unless you suffer with this unforgiving condition you really don’t know how it affects every aspect of womanhood, no matter what age you are. 

Glad you all there to help us deal with the good, the bad, and the simply unbearable time 

L❤️VE

Ha Ha!

Bought my husband a book called 'This is going to hurt' by a doctor turned comedian, because I'd heard it was funny. He was quite pale for a lot of it, I didn't realise the doc was a Gynae/Obs. Then he started giggling. He read out a bit where a woman was face-timing her friend while having a pap test! Apparently that's getting normal...?!

Ho hum, maybe there's less embarrassment out there then we realise...

Kids about to come home and computer in open-plan room. More on Monday. Have a good weekend everyone.

That is just horrible!! I am so sorry!!

Oh Sedg you have a great way of telling a sad story but making me smile regardless. If men went through what women have to endure with their sexual organs it would be totally different. There would probably be tons of $$ for LS research by now. I think our shame keeps us down when in reality we should not feel this way. Men sure don't seem to. I mean who funded Viagra?? Anyway ladies we are amazing creatures and beautiful to boot!! I try and pat myself on the back every day, plus thank the powers that be for all the great things in my life. Just the LS gets me down sometimes. Have a great weekend you two. So sorry you both went through that!

If you wanted to join the Facebook page couldn't you just sign up to Facebook with a different name and email address.  Just a thought.  I have two facebook accounts.

😂😂 

Yay B of S  great way to get husband involved in the magical working of a woman’s ‘Ladyship’

As we all know 

‘‘Tis not all plain sailing 😉

Good morning Ladies of Light 😊

Galen I agree that if men were to have this condition in greater numbers possibly more funding for research would be available who knows ?? 

One thing I will say to you is No way am I ashamed of having LS

Saddened and frustrated Yes but this condition has been affecting woman for years  

Usually hidden under a different name. 

Our generation have no problem speaking out   I hope 🙏🏻

I had a friend of 84 who had LS for 30 years   But sadly endured silence because vaginas were not spoken about to Ladies who Lunch !!! 

??

No way am I ashamed of it, either. However, I am a wee bit fearful of the reaction and gossip that might happen were I to speak openly about it in my community. And I wonder what my future holds regarding potential partners and physical intimacy. But honestly, I feel blessed to already have had a good sex life and now to be a mother. This one life we have truly is a blessing and although challenges arise from time to time in every aspect of life, I feel we should try to make the best of it. Otherwise we could spend the precious minutes allotted to us in misery... and what kind of life is that? At the same time, I do think it's important to let out our sadness and anger and find supportive friends/family. Sometimes sharing sadness and pain is the glue that makes our relationships stronger.

About raising awareness, there are things we could do if there was enough interest among us. My profession is actually in the field of "awareness-raising", so if any of you want me to start a thread on potential courses of action, just say the word.

Much love to you all,

Metta xo

I have spoken openly to a few friends, one of them then recognised the early signs in herself and got to her GP early enough to get sorted out before it got too bad. I'm so glad. There's one person I do regret telling as I thought she'd be good for spreading the word, but now am wondering if it's more likely to be gossip. But then if it gets someone diagnosed, that's the point isn't it?

Did I say that My GP thinks that nearly every post-menopausal woman will have it to some degree in their lives. That's how common she believes it is... People need to know. And they need to know that they're not alone. Again my GP said the main problem she sees is isolation, because people don't like to talk about it, so they suffer alone. That's where we can help isn't it?

Good on you for talking about it to a few friends. I haven't actually told anyone yet (aside from you ladies), but it's still early days for me. I'm just trying to get my LS under control and learn as much as I can about taking care of it. However, I will eventually speak to a few trusted friends about it.

I agree with you, BofS, that as women approach menopause, their doctors should be telling them about LS at every visit and advising them to check their vulvas often for signs of LS. I sure wish I had known earlier, and that my doctor had given me a better-informed course of treatment. Doctors need to learn more about LS, as does the general public. It's almost like post menopausal women are treated as inconsequential, insignificant. Post menopausal women are significant, we are sexual beings and I believe that even if we're celibate, we still need to get blood flowing through our genital region regularly to keep it healthy. We need to get ample exercise, and we need to eat well (among other things). If I may be so bold as to say, men generally go through life (especially when younger) being taught and believing that they need to masturbate daily or at least often to release and control their sexual energy, but women are still pretty much taught the opposite. I'll bet part of the reason men don't have LS as much as women is that they have a much healthier, open attitude towards "keeping the blood flowing" through their genitals.( ;

I am thinking of asking women on this site, and maybe elsewhere as well, whether they would like to contribute personal experiences with LS through anecdotal stories -- with a view to publishing a book. What would you (and anyone else reading this) think of that?

Regards,

Metta

 

I'd been thinking a similar thing. It needs to be featured in a novel or something, then suddenly it would get attention. Anyone know any authors of women's magazine stories? or books where it might make a good plot line?

I'd be happy to contribute to a book, but who would read it? and how would it be disseminated to where it needs to go?

I would happily contribute to a book as well BofS if I felt it would get the word out there. A while back I heard a Radio 4 Woman's Hour broadcast mention LS in passing (on a talk about vulval injury I think) and someone who has LS had written in to express that rarely did we ever hear LS mentioned anywhere and to ask for it to be talked about properly in order to raise awareness which Woman's Hour agreed to do. I tuned in to hear the piece and was disappointed to hear it being glossed over as a skin disease that can be caused by injury to the vulva. Once again LS is obviously too taboo to be spoken about on a radio show; the words labia and clitoris are clearly not to be broadcast, let alone what can happen to them with this horrible disease!  

I wrote to woman's hour and asked them to do a piece on it a while ago, and was told that they had already covered it a couple of years previously. maybe a concentrated campaign of people writing in to request it would help? I'll start a new thread.