Unable to urinate, just trickle, trickle, going out of my mind with worry

Hi Hanny,

Somehow, your situation is close to mine, except I am very open. Why? The only reason I can think of is because I had 3 kids. I use the dilator once a week regardless to keep it open. From talking to Claire on this wonderful board, I discovered that after my doctor at the Vulva Clinic told me that I should be concerned about my clitoris and the bit of white on it, and then told me she will book an appointment for November 2018, that was it, before she walked out of the room. The worry of that kept at me and that worry and fear gradually and eventually made me so tight that I had trouble urinating and defecating, both. It was a vicious circle of the more I worried, the more I tightened, and the more I tightened and couldn't eliminate, the more I worried. I was worried sick for 3 days. I was aware that I was very tight, but was not fully aware of why I was so tight. Very bad. Doctors are supposed to make you well, not make you worry. I hope it will be someone else next year. 

I was doing well up to this point and was doing borax alternately with Clob on other days. but I think the borax is too strong for me and I will try the baking soda. There's also Epsom salts and saline the doctor at the Urgent Care clinic told me about.

I think I have an issue with acid. I have Gerd which I eased by watching the acid. I remember you saying that you're on an alkaline diet? Is there such a diet? I know that I used to eat a lot of acid with my love of tomatoes, vinegar, etc.. Did you have that problem?

Maybe I should have reworded the question of my post still being moderated. I was digressing. No, my problem is not my vagina opening oddly enough. It is still very much open, but it does get a tiny bit smaller when the LS is agitated, so that's why I use the dilator once a week to make sure it stays open. Come to think of it, when I mentioned the dilator to the doctor at the Vulva Clinic, she yes if I have intentions of sexual relations in the future. She's wrong. It can affect the elimination processes, as you've mentioned and are living proof of it. I asked about food, and she said no effect. I've heard of other doctors saying that, but again wrong. I had a personal experience with sugar, so now I'm wondering about acidic foods.

The shrinkage is permanent because of my age. I know what I looked like before will never come back. I wish I knew though how much of it is age and how much is LS. I'll never know. The problem with me is my fear, tenseness and stress. I didn't realize just how much it can affect your body, but when you think about it, everything comes from your brain.

My other question to you was about acid. I know you had mentioned you're on an alkaline diet and stay away from acidic foods. Is it because of the LS? Does acidic foods impact or affect the LS? That was my question.

Michelline, it was because I was afraid of infection that I started to use the old method of my mother - rinsing with water in which a small amount of baking soda.  To my surprise the whole area improved, fusing gradually disappearing.  So I asked my doctors about it and both explained about the pH level in that particular area.  My nature path informed me about the food intake and gave me a list.  You can also find these lists on the internet.  These lists will clarify better than I can. 

?However,  the urethra doesn't always like the baking soda rinses and feels as if a uti is about to happen.  That's when I rinse with unpasteurised apple cider vinegar, a small amount diluted in water of course.  Usually that works wonders.  After that I go back to either baking soda or borax. 

Hi Hanny,

I will try and do the rinses, but I'm more prone to soak in a full bathtub with baking soda. I did the borax on alternate days to the clob and there was improvement. I stopped everything except the clob when I had noticed my labia majora turning black to see what I was doing wrong. The black has faded and I think it was the borax and the Premarin day doing it being too close to each other. I was soaking in borax and waited about 20 mins. and then the Premarin. It looks like the Premarin didn't like the borax or vice versa. So, I might try the borax or baking soda again during the day with the Premarin at night. I asked the doctor at the Vulva clinic about the black and she told me it was just the pigment, but it had faded by then when she saw it. I am naturally darkish in that area but never that dark. It was nearly blue black with a demarcation line about half way. 

I looked for this list on the Internet but was not too successful. I hope I find something. Do you mean the raw organic unfiltered apple cider vinegar with the Mother? I have a bottle of that. If that is what you mean, how much vinegar diluted in how much water? Also, are your rinses 1 tsp baking soda to a bottle of water? Are you still taking your full baths with borax one week and baking soda the next? I'm asking because you have been successful?

When I use the word alkaline, it probably will be removed.  But I'll try.  That's the kind of list you will be looking for. 

Unless you mention a brand, I don't see why they wouldn't let you post it. It will help a lot of people with this horrible disease.

Hi Sedg,

Thanks for your response. I can handle LS most of the time as it is stable right now, but not being able to pee is one big scary episode, let me tell you. What doesn't help me is that I have a vivid imagination to go along with it, thinking I was slowly poisoning myself not knowing where the urine was going.

Well, I have things under control for now. I'm not taking anything for granted. I'm taking note of your suggestions and products. Right now, I have a bowl of high fiber cereal, bran buds thrown in, and chia seeds, with almond milk every day and that works well. I get sick of it though after a while, so maybe taking your product on alternate days would help heaps.

Not sure right now if Clobetasol is too strong for me, but if it does become that, I've taking note of your product.

Thank you so much for your wonderful message.

Love and Peace to you Sedg

Micheline 

For woman,  I understand that lack of good flow peeing is not generally a symptom of LS 

Though I know for men who have LS it can be dreadful.    

Obviously our architecture is different. 

I know you said you were a worrier, well truth be told, I think we all get anxious at times with this Ugly condition. 

I would advise you getting medical advice on pee issue separate from LS.  I would ask for specific investigation and not second guess that everything ‘down there’ is linked to LS 

Good girl on the almond milk stakes 😊  I too cut out dairy n sugar 

I do think as many do diet has a way to go with LS 

HaPpY DaY Micheline 

Love n Peas X 

As far as possible. 

Thank you Sedg for another great message. For these three days I didn't even have a poor flow. It was only a little trickle trickle. That's what was scary. Yes, I do try to get on top of things. I have an appointment with a urologist on January 18. I saw her on Oct 23 for a consultation to make sure everything was ok in that department. Of course, this problem came on long after. I was going to contact her for an urgent appointment but things got better. I'll report back with more information on it if I get it, hopefully. Sometimes, doctors have no answer to things. I've seen posts before on this trickle trickle issue on this forum. Maybe I can help with some answers hopefully.

Yes, I found out about the sugar. I heard about that on this forum. I wanted to test it to see. I got the proof of it when I drank a soda and had a major flare-up on my back-side. The whole area became red with white spots. It went away as fast as it came. Strangest thing. Now I make sure I order water with my meals at restaurants. Sodas have 40% sugar. Now I'm appalled at those drinks being sold. There should be a law against it.

Have a great day Sedg.

with love and peace.

​And the trickle, trickle as you describe it,  sounds familiar as well.  As I said earlier, the fusing ever so gradually melted away, but not without me having the urethra becoming super sensitive.  With that sensation I used a small amount of apple cider vinegar instead in my Perin bottle.  Till now it works. 

​Not until all fusing was gone in that area the infections stayed away as well.  And yes, I always use a small amount of coconut oil at the top after the rinsing.  Gradually my feeling of the urine passing is returning.  But not as much as I would like to.

Thanks Hanny for your reply. Sounds a lot like what I have but we're not identical of course. For instance, I don't have a feeling of a UTI coming on from the urethra. My trouble is I have no feeling of the urine passing at all, so I have to listen for the noise it makes to reassure myself that I'm voiding. I haven't started doing the rinses yet, although I want to do it soon. I'm still looking for a Perrin bottle. They are hard to find. In your case do you think that the urethra became sensitive from the baking soda in the rinses? Do you think I should maybe start with one pinch of baking soda just to test?

I'm half fused meaning the bottom half of the labia minora are totally fused and the top half only a little bit fused. I had read that the inner labia is what guides the urine, acting sort of like a funnel, and I guess that's why if you lose those, the urine sprays or just leaks out depending how strong it is. What a horror this is.

Thanks for telling me you use coconut oil after rinsing, but do you apply the oil right after or do you have to wait a few minutes? I have the hardest time with the process or protocol. I read some people wait 20 minutes between applying this or that.

Thanks Hanny.

For the longest time I had to listen as well. 

?Good plan to start with small amounts for baking soda first.

?I don't wait after rinsing.  I pat dry and apply a small amount of coconut oil.

?Above all -  do what helps you.  If something gives you comfort and noticeable improvement somehow, go for it.

Thank you so much Hanny. I wish I could give you a big hug, but I'll just say big hugs to you. I have a urologist appointment on January 18 and I will report back. I just hope that by miracle there is a revelation of some sort that would answer my questions.

Thank you.