Posted , 19 users are following.
Hi
I am struggling to get rid of VA symptoms after 4 months on topical hormone treatment. I need to hear from women who have overcome this and how and after how long. Feeling fed up.
1 like, 113 replies
We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.
AnyaAlanya catherine32075
Posted
Hi Catherine I have the same diagnosis mine is very severe with no rest bite, this is making me sick as it's chronic, I think it depends on how severe it is that you have it but I know it's excruciating pain .
donna18720 AnyaAlanya
Posted
AnyaAlanya donna18720
Posted
I am to have an ultrasound on the 24th Dec (sat) they will not be able to use vaginal probe because it's that severe
I'm not in a relationship
My life turned upside down after having hysterectomy only young too! My next step is Botox injection after Christmas , I really want the vaginal probe but I know this will be impossible as extremely narrow and too painful unless they put me to sleep
donna18720 AnyaAlanya
Posted
I've not heard of a botox injection. But I am narrow too. I've been married 40 years and did not expect my sex life to end at 62. My husband is being a good sport but it has been four months. The last time I could literally feel myself tearing. I'm frustrated that there does not seem to be a way to bring me back 100 % I am better after months of estrace but not good. And it goes from feeling fairly normal to bad again. I wake up every morningwondering how bad it will get
catherine32075 donna18720
Posted
Me too..every morning is a panic with me calming as the day progresses depending on symptoms.
I know it might not help much but I have replied to Kkay following some advise she gave me. I contacted a specialist nurse in VA through The omens Health Org who said that the erratic recovery nature of VA is typical. She talked about the use of patches or other systemic hrt alongside to help. In addition, as Kkay and others suggest, increasing doses of treatment.
Just thought, like me, that any gem of hope will help. Somehow we have to keep positive and see an end in sight.
donna18720 catherine32075
Posted
I have a list of everything Kay has suggested and will take it with me on my GP appt on the 27th. I feel like I have had to take control of my own medical care as they are so ill informed. MY attitude has taken a turn for the worse with my doctors. When they act like I'm interested in improving my sex life I just want to scream NO I want to sit, I want to pee without constant burning, heck I want to be able to walk. I explained that at it's worst it was the same as putting my hand on a hot burner and leaving it there. With me it's not a minor irritation it's pain. Just trying to find answers. I need to work again. ugh
KKay donna18720
Posted
Try to get a referral to a menopause specialist; get them to give you more Vagifem; consider a systemic HRT (Patch or gel) as well, check out the threads on menopause matters dot co dot uk, google the website of a Dr Studd or Studds and if all else fails there is the mona lisa laser procedure that apparently has helped many.
catherine32075 donna18720
Posted
Hi Donna
Just in case you haven't seen, there are some positive posts occuring about ways of treating VA.
Hope you are OK! Have you got anything to report?
donna18720 catherine32075
Posted
I haven't seen them I'll look thanks
kit20654 catherine32075
Posted
Hi:
I had 3 treatments of Mona Lisa starting last October. My doctor charged $1800.00. He also gave me 3 followup treatments free of charge just using the laser on the outer area of my vagina. I had previously used Premarin cream for the VA. I was very hopeful that the Mona Lisa would work. I was so hopeful that it would work that I stopped using the Premarin. In hindsight, I think if I had continued using the Premarin, I would have had more success. I still am not able to have intercourse. I am using Estrace now and trying dilators, but not using the dilators as frequently as I should. My doctor is pleased with the improved tissue, as I am sure it has improved, however I still can not have intercourse. I will keep using the Estrace and will try to continue using the dilators but I don't know if it will help. I do not regret trying the Mona Lisa, but for me it did not help with my ability to have intercourse. I don't know if I will try it again. I am 59. Hope this helps......
KKay catherine32075
Posted
Beat wishes for a healthy 2017 😊
How are you doing now Catherine? Donna?
I sat down over the hols and systematically took notes on the 61 pages of posts on VA on menopause matters. One of the main points I came away with is that many women are advised by their healthcare providers to take Vagifem more frequently than twice a week. Some take it four times a week, some every other day and some three times. They also describe repeating the loading dose of every night for 14 nights more frequently than once a year.
I am temporarily using Premarin cream as I was travelling and it is quite strong but will go back to Vagifem again once I get back home the middle of this month. Twice a week really didnt work for me at all so I am planning to load up again and then try every other day and see.
catherine32075 KKay
Posted
Hello
Glad to hear from you. That's interesting about the vagifem. I am waiting for my GPs surgery to open again so I can discuss a referral to a specialist, following up on a couple of names (including the one you passed on Kay). I have not been so good this holiday, not as I was before. I think the pressure of Xmas etc. hasn't helped me personally. I have started to try Replens which I think is helping, in between vagifem which I have now started to take every other day but too soon to tell if this is working. I will let you know.
I have thought that if I ever get properly through this, I must do something to help others in this position, not ure what exactly but it has been a real eye opener to me.
I struggle sometimes with the less positive reports of how long it takes women to get the right treatment and moveon. I wonder if the women who do recover more easily stop posting?! Not sure but it would be good to know how women do get better.
Meanwhile it's good to be in touch with you and others who are in a similar position, I will pass on anything positive!!
Happy new year
KKay catherine32075
Posted
Catherine, I'm glad you will be seeing a specialist soon in the new year. Fingers crossed that you will wind up with someone who knows what we are going through!
I couldn't agree with you more; this has been a tremendous eye opener for me too. I am incredulous that the majority of the medical profession, espacially gynecologists who should be completely conversant with VA, are so ignorant. Its really astounding.
I also struggle like you with the accounts here and elsewhere of how long people suffer. I think you are right; people probably stop posting once they are better. Maybe there should be a specific thread asking "how long did it take you to overcome VA from diagnosis to recovery" or something.
Best of luck and looking forward to your news.
Happy New Year
catherine32075 KKay
Posted
Hi Kay
I have done as you suggested; let's see if we get some new ideas and hope for our future, watch the new post?!
KKay catherine32075
Posted
Still trying to get the message I wrote you to send - its quite long
donna18720 KKay
Posted
My doctor gave me a new prescriptin for Yuvafem. It is the new generic for vagifem. It is supposed to be the same. It just came out this month here. I will try it after I finish this tube of estrace.
I've had a bad week. I haven't been able to work except for short periods of time. It's not as bad as in the beginning but I am depressed. I am still on just twice a week and I don't think it's enough. I have been searching on the computer for someone that specializes in menopause but it seems the money is in the making babies side of gyno.
With my doctor telling me this may be the best it will get I have been more on a search. I read for hours the menopause matters posts. And I think we need some attention. I am not ready at 62 to just give up. Resign myself to living with burning pain and losing my lovemaking with my husband of 40 years. This awful thing has turned my life upside down. Just walking and shopping for Christmas increased my pain.
Every other day sounds like a lot ? But who knows.I honestly seem to have more irritation the day after I use the estrace cream. And I dread using it.
I also have had uti symptoms come and go this week too
I wish I had positive things to add but I don't.. The new thread was a good idea
catherine32075 donna18720
Posted
Donna
Kkay and I had the idea to start this thread in order to find positivity for us all and there is some. However I agree that it is hard to be positive; we are all in our own situation and inside our own heads trying to cope day to day. I have also had a bad week, not that it's any consolation. I have also found that I have more discomfort after using the vagifem; my bad week coincided with me moving to every other day use of it. I had been doing better too (ANYONE OUT THERE KNOW IF THIS IS USUAL AND WILL IT PASS).
I saw a urologist yesterday who has suggested he looki inside my bladder with a camera and possibly do a dilation to help ease the symptoms. I have agreed to this. I am seeing a menopause specialist next week so hope for some help there. The urologist accepted that little is known about why these symptoms appear and that they aren't sure how to treat them...at least he was honest.
I am struggling to work too because my mind wonders constantly to how i feel and my energy is in coping with the pain. I will let you know if I find any other suggestions.
Take care
donna18720 catherine32075
Posted
we seem to be on the same path. I have not been able to find a specialist in Menopause but I at least found a doctor that list menopause and HRT as things she treats. I've had a very rough week, hard to sleep. Pain meds making me sick and now we are dealing with frozen pipes in the house. I'm ready to pack up and move south
catherine32075 donna18720
Posted
HI Donna
it's hard to find specialists; it has taken me a while. The person I am seeing was recommended by another doctor and the urologist I saw last week, who is really good in his field said there weren't many menopause specialists. Crazy isn't it!?
I know it's hard when other stresses hit on top of this. So hard to keep on keeping on.
What do you think as to why the treatments worsen the symptoms after use. I am sure that after I use vagifem, the symptoms woren. I don't know if this is usual, a good or bad sign? I am going to ask the specialist when I see her on Friday.
donna18720 catherine32075
Posted
I don't know unless it is a delayed reaction to the time span when we are noting using it. But to me it seems like the morning after I use a treatment I am more sore ?? I look forward to what your specialist says.
donna18720 catherine32075
Posted
catherine32075 donna18720
Posted
Hi Donna
I didn't ask, I think I forgot in the midst of everything else. I did ask why some days were worse than others and she said it could be to do with what I ate or drank.
How are you. Have you started Mona Lisa yet?
donna18720 catherine32075
Posted
no I'm waiting for now ,for money reasons and they have only had 10 patients so far. I've seemed to level off. Most days I can say I can be about 75% back to normal. But it seems after I use the yuvafem I get worse the next day. And the last ten days I,ve had a yeast infection. Ugh
catherine32075 donna18720
Posted
Oh right, I understand. I am in the UK and not sure how much it is but I wouldn't be able to afford it. Glad you have seen some improvement. That's good. Keep me posted.
donna18720 KKay
Posted
You are great Kay ! It is confusing trying to follow different conversations. I never did increase my yuvafem to three times a week, just kept it at twice a week because I felt like it was causing yeast. I fought the yeast for two weeks inside and in my panty lines too. It was awful ! Finally after mutiple doses of diflican it calmed down. This last week was pretty good not I'm going to have sex good but I'd say about 90% good.