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Pessary ring - anyone here advise pros and cons?

Posted , 2 users are following.

lynne1945
lynne1945

Hi

I am a new member with LS. Have posted once before with first time poster as my heading. My last visit to the gynaecologist for LS last week we discussed my bladder prolapse, which has descended to slightly protrude out of my vagina. I am worried about steroid cream thinning it or irritating it. Although she gave no answer to this, she said that in two months ( I have NO idea why two months, perhaps she is busy as well as quite quick to brush aside any questions I had from this site and others) she will insert a pessary ring!

I am now on the steroid clobetasol and oestrogen but ever since I went on it I have been in intense burning pain, no matter what I do. She said twice a day for two weeks but after a week I cut it down to once. 

Anyway the pessary ring ... Is it sore for us LSers or don't you notice it? I actually hate the idea but I am guessing there will never be an offer of surgery from our public health system due to my age. *sigh*

another thing I have decided is to visit a dermatologist who specialises in all things vulval. To do that I need to travel an hour away to another city as our city, pop. 176,000, doesn't have one! Never mind, what's an hour on my new doughnut cushion. 😉

I think will be worth it, the two gyns I saw here, one was a man and didn't even diagnose it and the other seemed to be knowledgeable but gave me no tips on how and where to apply cream and I think it's gotten all over my good skin and burned me badly. How do you keep it off good skin in that area anyway? All advice to all questions gratefully received.

Lynne 

 

0 likes, 4 replies

4 Replies

  • patricia86334
    patricia86334 lynne1945

    Posted

    I am sorry you are having this situation come up.  I have no experience with the bladder problem, but I thought I might mention what my dr., who is an LS specialist, told me about applying the steroid.  She took a photo while she was doing the exam, and showed me on the photo exactly where to apply the steroid.  It is to be applied only on the whitish or lighter colored skin...and only there.  Do not get the steroid on any skin that is not involved with the LS.  It is not easy to be so controlled in such a small area, I know.  But it can be done, just take your time when you apply.  It is a bit easier to do if you start with just a small amount and add to it if you must.  I use a very tiny, tiny dab of the steroid myself.

    The specialist I refer to is about 2 1/2 hrs from my home, but to me she is worth the trip!  The two drs. I saw in my home town were very little help, and in fact gave me no information or confidence at all.  I am glad I searched out a Vulvar clinic and a dr. there who specialises in LS.

    • lynne1945
      lynne1945 patricia86334

      Posted

      Thank you Patricia for your post.

      I seem to have a peculiarity with my LS as I don't have any light or white skin. I did last year have some patches like whitish fungus but that went after my diagnosis and when I started using the cream. I have red lesions, and one in particular never heals. I apply the cream to these lesions and I burn for hours, sometimes all day. I went back today to GP for a referral to dermatologist and while there I asked if there could be some mistake and I didn't have LS? I said I have now seen 100s of photos of other people's bits and mine look like none of them. She assured me the biopsies were conclusive. So I dunno! I was actually worried that it might be pre cancer but she said absolutely no. I also asked her how many women she has seen with LS and her was, that since joining the practice two years ago from med school, she has seen a total of ONE! Mine. 

      Whoever wanted to be so special and unique. Not me. 

      I think to get an answer to my pessary question I might need to to another area of this site. But I will be back here to get support as I'm sure I'll need it.

      thanks again and looking forward to my dermatologist visit. Wow, two and a half hours trip each way for you! 

    • patricia86334
      patricia86334 lynne1945

      Posted

      Hello again,

      Yes, the trip, although long, is worth it to see some one who specializes in this dumb disease.  Is there any chance you could find a Vulvar clinic in your area?  Even the ob/gyn I was sent to when my reg. gp didn't know what I had, has many patients with LS.  And in her office, one time I had to see her nurse, and even she has many patients with LS.  I was beginning to believe it is pretty common.  AT the Vulvar clinic, when I was in the exam room, the nurse who was with the dr. told me that SHE has LS.    If the dermatologist you are going to see does not give you answers and the help you need, I do hope you can find a specialist to take care of you.  Those lesions you describe sound horribly painful and scarey, and to have burning pain all day is just too much!  Have you tried putting any sort of organic oil on those lesions after you use the steroid?  maybe emu oil or coconut oil...I am so glad  you are going to a different dr. for this....

       

    • lynne1945
      lynne1945 patricia86334

      Posted

      Hi Patricia

      No, there is no vulval clinic here, even though we are quite a large city. But the one an hour away in Hamilton, NZ specialises so hope I don't have to wait too long. I am going as a private patient so that will help.

      Yes, I put cream on them night and day. I always wash with soda bicarbonate after wee and yes, I have tried Emu oil and other ointments from the chemist, the latest I am trying is olive oil based with camomile and used for nappy rash. I am trying to get Emuaid, made in USA I think, but may be available through Australia . 

      Its very painful and quite overwhelming, I am very depressed I have to say. 

      In the last five weeks my life has been on hold. I'm so glad to have this site and one other I found, because there is no support group and nobody to talk to except my long suffering and lovely husband. 

      Thats amazing that you met all those people who have it too. I would love to meet just one and hear that good times will come again.

      maybe I will try coconut oil .... what sort is it? A special type? I have never used it in my home for cooking. 

      Grateful thanks 

      Lynne 

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