Speed of increase in changes?
Posted , 13 users are following.
I have been aware of new shrinkage and fusion recently which has all happened within a month. Steroid has calmed it down but not unfused me. I had no symptoms (itching or soreness/pain) but it all seemed to happen so fast. My GP told me all looked ok in July. I have seen her today and she still thinks not much has changed and also told me that changes don't happen fast, that LS is insidious and it is just that we don't notice the gradual change. She was happy to refer me to vulval clinic to ease my mind but only because I asked. Appointment won't be for another 6 weeks.
I can't think why I have had this sudden change again when everything seemed reasonable, we were on holiday and I was relaxed. GP asked about the temperature where we were and whether I had been swimming a lot, but I can't see that those things would have brought this on as I swim regularly and heat doesn't seem to affect me.
Has anyone had a similar 'speedy' increase in changes and what have you done about it, if anything?
0 likes, 50 replies
msbutterfly sarb73328
Posted
I noticed a change very quickly--I think drs want to downplay this but, to us, it's pretty devastating.
pat0423 sarb73328
Posted
Hi sarb- so sorry you have this happening. Yes I’ve experienced rapid fusing, too. The only thing I’ve found that truly stops it in its tracks is borax soaks like Hanny talked about. And for me small amount of steroid cream as well. I use a very small amount of borax in a sitz bath (1/2 teaspoon) with a little baking soda too.
I ended up with an unusual situation personally so I cut back some temporarily- but most women say soaking once or twice a day in it is helping them stop symptoms. It can take some time and can get worse before better so hang in there!
To all of you: there is a Facebook page/group Healing With Borax that has information and support that I’ve found helpful and hopeful!!!
💜💜💜
deethebee pat0423
Posted
pat48434 sarb73328
Posted
Thanks to all who have responded to me. I, like all of you, I'm sure, rely on the information we get on this blog.
By the way, I am feeling more relaxed having told my daughter I needed some time as well as herself. Its been two weeks of bliss and I have had a big difference in the LP. Don't let your body kid you, stress gives us our bodies really bad vibes listen to them.
susan49619 sarb73328
Posted
Dear Sarb. I have also had a very speedy disappearance of my tissue. I don't have an answer but I am looking into the immune system. Basically, I just wanted you to know that you are not alone and I know exactly how frightening this feels. Hang in there.
Susan
susan49619 sarb73328
Posted
Susan
Lodge sarb73328
Posted
Yes, GP kept saying everything looked fine despite pain when having sex and by the time he referred me to a gynae everything had disappeared and I was told I had Lichen Sclerosus et Atrophicus.
That was seven years ago and have never had a follow up.
sarb73328 Lodge
Posted
Lodge - this sounds a little worrying that you have never had a follow up in 7 years? Did the gynae not suggest you use steroid cream and come back for regular check ups?
Lodge sarb73328
Posted
I know, but some of it is probably my fault because I haven't pushed for it. Getting to see a GP in our area is almost impossible. I have been trying for over three weeks and have only managed a brief telephone consultation and then an appointment made for 27th November!
I definitely feel there is something going on with my urethra, it seems to be and feel more inside the vagina than it used to be (if that makes sense) and I can feel pressure and fullness in my bladder all the time.
Have now taken up three samples this week and they now say they don't think it is (or was) a UTI.
Also I have feeling constantly sick for six days now and have told the GP this:(
karen23320 Lodge
Posted
I too thought I had a UTI, same feelings, all turned out to be related to LS diagnosis, Please go to DR AND GET RE- checked!
Lodge karen23320
Posted
Thanks, I am feeling awful this evening, just sick to my stomach.
As I said, I have been trying to see a doctor for three weeks, but no luck. Will keep on trying to get an earlier appointment than 27th November.
When you say it turned out to be related to LS, what was the outcome? Also did you feel really sick with it?
susan43705 Lodge
Posted
Hi Lodge, Lately I have been getting up to pee a lot at night, seems like at least 4 sometimes 5 times. Never had that before. Keep thinking it is UTI too and have not seen my doctor. Then I thought maybe the Clob and other creams are irritating my uretha and causing a fullness. It is so hard to know and I'm so exhausted wondering what the heck next.
karen23320 Lodge
Posted
I had a feeling of urgency to go, but didnt hv to, I FELT " full" all of the time and it burned when I went potty. I also had a lot of tingling, then pain in the clitoral area( which is right next to the urethra), so I didn't know if it was a problem with ureter or clit?? Kept taking over the counter UTI strip tests and all were negative.
When I finally saw a gyn, it was Ls that I was feeling, not a UTI.
Lodge karen23320
Posted
This is exactly what I feel - full all of the time and pressure, plus some pain in the urethra area which also burns. I don't think my urethra is below the clitoral area anymore, it is more "in" the vagina.
I have taken four urine sample to the doctors and only one showed positive, but when it was sent off there was no culture (so they told me). I do think I was unnecessarily treated with antibiotics because they didn't check my history and that I have LS.
They are now telling me to use the steroid cream every day (Locoid), but still don't want to see me - this whole process has been carried out via a couple of phone calls.
karen23320 Lodge
Posted
phone calls? You must not be in the USA? Dr's here will not tell you anything over the phone, and always want to fleece you for an office visit- usually $130 for less than 5 min of their time!:(