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Have you neen offered pain management medication for vaginal atrophy?

Posted , 4 users are following.

lee12629
lee12629

Since Vulvodynia and atrophy have many symptoms in common,in fact some women have both ,Vaginal Atrophy and Vulvodynia,have you been offered any options other than HRT such as tricilic antideprsants to reduce central nervous system pain,anesthic ointment or siezure drugs that also can control nerve pain?If these things help vulodynia I would also think they would help the pain of VA.One of the gynocoligist I saw said she might consider this if other things such as Replens etc dont help.Food for thoughy.Pain is caused by nerves and adville etc barely touch it with me.

1 like, 73 replies

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  • Suki_girl
    Suki_girl lee12629

    Posted

    Hi lee, i think I told you I was diagnosed with vulvodynia in summer 2013. I was given amitriptyline. I gradually worked my way up (5mg increases every 2 weeks, otherwise I got side effects - have to cut the tablets in half) to 50mg. It did help - it made day to day living more bearable, but sex was still out of the question. What finally got me better was acupuncture - western acupuncture given by a qualified doctor - it compliments the amitriptyline in damping down the over active, hyper sensitive nerves. Manual densensitisation also helped to retrain the nerves to register touch as touch and not pain - stroke yourself on the area that is painful, with lots of oil based lube ( coconut oil is great), very gently and only once to start with. Very gradually increase the number of strokes and pressure. You have to do it once every day and only enough so that you do not significantly increase your pain. I did it until I was up to 200 fairly firm strokes, then I started to put my finger inside - from this point on you can start training with vaginal dilators e.g. Amelle, or you can just increase number of fingers. Pelvic floor exercises can also help - I did these too. There is a good book which takes you through the pelvic floor exercises and manual desensitisation steps called "Seven steps to pain free sex". I did all the above and, after 1.5 years was having wonderful pain free sex again, then got dry due to menopause!
    • beverly52803
      beverly52803 Suki_girl

      Posted

      My God, do men go through anywhere near the misery that women report on this site? I know men often deny problems they are having and as I do not live with one now, I can't help but wonder if this misery is evenly distributed amongst both sexes. I am feeling absolutely blessed having AV that (for now anyway) is not causing problems, but that is precisley because I am not attempting to have sex.
    • tracy12090
      tracy12090 beverly52803

      Posted

      I doubt it and if they did they would take to their beds and expect to be nursed :-)
    • lee12629
      lee12629 beverly52803

      Posted

      My issues started with very bad vulva irritaion,mainly itching..one said i had bv then another tested me a week later,no bv..this lasted about5 months..was angry red,you name it.Then had an exam..ive had so many since may,one doc thinks i have a mild case of lichen Sclerosis, derm said no,didnt know what was causing things another gyno wouldnt comit on that one No one mentioned VA until i read it on my online health record.The terrible redness is gone for now not much itching,now i have dull acheing,burning at times,some bladder discomfort..egads..just wish they knew what the h they are doing.
    • beverly52803
      beverly52803 lee12629

      Posted

      Lee, So you're only 6 months into this? I have written this before so my apologies to anyone who is thinking "not again", but if it helps one person it will be worth it. When I had the 5 year unproperly diagnosed infection I was treated with various antibiotics as well as hormone cream though I had asked for Flagyl from the beginning. The gyno said what I had did not call for it. She eventually sent me to a specialist because she thought maybe it was dermatological (sceloris I guess). That specialist wanted me to go to a pharmacy that concocted special creams (at great expense not covered by insurance). After those 5 years of skin so raw it was like a burning wound  I was at my wits end and spoke to my GP who immediatley prescribed the Flagyl. He was very suprised the gyno refused to. Said his sub specialty was infectious disease (I think) and that Flagyl would certainly be indicated as I had taken it years before for these mysterious infections. (My previous gyno never gave it a name).

      What you are describing sounds like the infection I had. Some women have mentioned taking Flagyl for BV, but I never had that diagnosis.

      I do have AV now and perhaps the inflexible gyno saw the beginnings and focused on that. I don't know. All these years later (17) I have very few symptoms, just occasional burning but an inability to withstand a pelvic exam. The newest gyno wanted me to use Premarin cream to prevent further atrophy and future problems but I have not gone that route...yet. I'm concerned about introducing them at this stage & with cancer in the family though the gyno felt it was very safe.

      So maybe you could have what I had...don't know..

    • lee12629
      lee12629 beverly52803

      Posted

      Ya know i wonder too.I plan on getting more swabs at my pelvic in jan.I have internal atrophy which is confirmed,however just because I do doesnt mean i dont have somthing else..they just forget that posibility,edpecially when one swab was positive ..also the lichens..if i do have it can caus issues.I often wonder if i may have some nerve damage from the months i was so red sore and itchy.
    • beverly52803
      beverly52803 lee12629

      Posted

      Did you have a test for the lichens? As I understand it (now) that is how it is diagnosed; don't think it should be a "maybe". Re swabs for infection, mine were coming back negative (so I was told) though the gyno said clearly she could see there was something wrong, hence the other treatments and theories. It certainly wouldn't hurt for you to discuss the possibility of taking Flagyl. Both the gyno and the GP died prematurely and I have had 2 of each since so I will never know what they were recording in my files. I probably couldn't make sense of it anyway. Just would hate to kniow anyone else was put through what I went through for NO reason. Good luck!
    • beverly52803
      beverly52803 Suki_girl

      Posted

      You know I may have been incorrect when I said tranquilizers were suggested when I had my infection. It could have been an anti-depressant...or maybe both! Even though it was driving me mad I just couldn't let go of the thought that the Flagyl would cure me so I didn't agree to take any psych meds. Obviously in your case they were what worked. Maybe my gyno at the time also suspected vulvodynia.

      She also strongly recommended HRT for menopause which I refused. Ironically she died of breast cancer. Have wondered since then if she put herself on HRT. Thanks to the Nurse's Study we have been saved bringing cancer on ourselves with that "solution" to menopause.

    • tracy12090
      tracy12090 lee12629

      Posted

      Lee mine started this way redness, burning, dryness a bit like a Chinese burn inside. Angry red inside with almost a raised rash, I suffered thrush constantly and often that gives me the sane symptoms without there being any discharge visible as nothing comes out as it's too dry. Vagifem helped me at 25mg ( was normal then) 3 times a week for quite a few months maybe 8 months I think.

      I would also check you don't have thrush the cream only treats the entrance not high up. I recently used the cream which cured the vulva signs and felt fine but the dr found it was still high up without any signs. A fluconazole (Diflucan) sorted it but unfortunately with the unbalanced flora it will probably reoccur. I'm actually thinking of trying some of the anti thrush supplements meant to keep it at bay.

      Lichens is also a possibility if I'm not cured use that loosely I'm going to be having a biopsy of the skin done. Not looking forwards to that! I'm hopeful the Ovestin is the answerI'm definitely feeling less dry and the skin more supple so it's not pulling as much when I walk etc.

    • lee12629
      lee12629 beverly52803

      Posted

      No no biopsy dermatologist said didnt fit the pattern,however early stages probably dont.
    • lee12629
      lee12629 tracy12090

      Posted

      I think the gynocoligist said i could just try the vulva with premeran or estrace cream ,wouldnt have to use much on the outside.I still need to try the coconut oil and the key E first.
    • tracy12090
      tracy12090 lee12629

      Posted

      I think it's always best to try the natural products first if they work you can avoid Hrt. Ovestin is 1 mg strength inside and a smear around the lips, I'm presuming those creams are about the same? Vagifem wasn't strong enough now my symptoms are full blown. I do feel more comfortable as in more lubricated and the skin seems more supple. I'm on my 2nd week where you use it everyday then twice week I think after that. There's definitely less pulling when I walk and I'm thinking about it less which is good.

      Coconut oil is good though I use that on the lips if they were dry and it lasts. I also used the Carsons Vit E capsules they were quite good too I used to cut them in half as they are quite big. They should all provide some relief

    • tracy12090
      tracy12090 lee12629

      Posted

      Your saying you had the skin biopsy what was that like? It sounds dead painful :-/
    • lee12629
      lee12629 tracy12090

      Posted

      No i didnt have one.Ouch is all i can say.Thankyou for all your input.
    • beverly52803
      beverly52803 lee12629

      Posted

      I'm sure you've read up on this. Apparently it's visible to the naked eye in terms of the plaque. They take a biopsy to confirm if there is doubt. A 4mm "punch" is what I read. I'm sure they numb the area thoroughly. If it's the difference between knowing and not,  I'd get it over with and move on from there.
    • Suki_girl
      Suki_girl beverly52803

      Posted

      I had a vulva biopsy to check that nothing serious was going on before vulvodynia was diagnosed. Just one 4mm hole punch in my fourchette, where I was experiencing the burning pain (the bit of skin just posterior to the vaginal opening, between the opening and the perineum). The gyno did numb the area with an injection first - a bit of a prick (the injection, not the gyno!), then the taking of the biopsy didn't hurt - even when he didn't quite get a full circle of skin and had to cut it off with scissors! Stung a little when he put some chemical on to cauterise it. Then it was uncomfortable for a few days after (it was a hot summer). Was worth it to rule out anything serious.
    • lee12629
      lee12629 Suki_girl

      Posted

      Im thinking of having a biopsy to make sure its just atrophy. Which is enough. I would think being that irritated nerves caus pain that the meds for vulvadynia would work to settle irritation pain from atrophy as well. My gyno seemed open to the idea. Are you on any meds? If so might I ask what,and do they help?
    • Suki_girl
      Suki_girl lee12629

      Posted

      I wrote above about being on amitriptylene and also having a year of acupuncture and manual desensitisation. Once I started those treatments I got steadily better and ended up having vulvodynia for only 1.5 years. I am still on the amitrip, so maybe it is helping with the pain of the VA - my hubby and I still have intercouse, and I am a bit sore for a day or 2 after. I can also give you a tip for something to apply that I found really helped with the horrible burning of vulvodynia: it is a gel containing natural plant based extracts that reduce inflammation and act on the over active nerves to calm them down. It is called Saginil Gel and it was specifically developed for vulvodynia. It is not available in this country, but because it is not a medicine (it is classed as a food supplement, because it is natural) you can order it from abroad on the Internet. I get it from the manufacturer called Epitech in Italy. Although my vulvodynia has gone I still apply Saginil gel after intercouse as it seems to help reduce the soreness quicker.
    • tracy12090
      tracy12090 Suki_girl

      Posted

      I have gone down the route of meds (Nortriptyline) and I have to say it really has made a difference. I had a lovely break from pain for about a month now. While the Ovestin kicked in, I've been under a specialist who I saw over Xmas for a review and he's happy with the skin quality now and has said once I finish my Nortriptyline to try and come off them but if the pain returns he's happy for me to stay on them. As you say there is still irritation after sex due to friction I use coconut oil after but I will look out for the gel. It's been a joy to forget about the symptoms long may it continue :-)
    • Suki_girl
      Suki_girl

      Posted

      Reading what other women are going through i guess we should consider ourselves lucky that we are just experiencing some soreness after sex.
    • tracy12090
      tracy12090 Suki_girl

      Posted

      It has been a long road to where I am now with the full quota of symptoms but with persistent trial and error plus advice gleaned here. I'm now in a better place and feel like I'm nearly back to what used to be normal! If Dr's had the proper training we wouldn't all be suffering for so long beforehand.
    • lee12629
      lee12629 tracy12090

      Posted

      Do you have vulvadynia too,or just atrophy? Actually I think the 2 go together because of symptoms.
    • lee12629
      lee12629 Suki_girl

      Posted

      I bet it is helping VA.Did you have the swab test to confirm Vulvadinia. I told my obgyn I want that at my next pelvic.
    • beverly52803
      beverly52803 lee12629

      Posted

      What swab test can there be for vulvodynia? I thought it just meant pain in the area surrounding the entrance to the vagina. Is this something new?
    • lee12629
      lee12629 beverly52803

      Posted

      I believe vulvadinia is a seperate entity in itself,but..I myself think its also involved with atrophy and other vulva issues
    • lee12629
      lee12629

      Posted

      They use a cotton swab test to check for specific areas of pain on the vulva
    • Suki_girl
      Suki_girl lee12629

      Posted

      Yes, after the biopsy and internal swabs showed no infection or abnormal cells (apart from chronic inflammation in the biopsy), VA was diagnosed. Then I had the cotton bud test to determine the area affected, which was a typical horseshoe shape poster to the vaginal opening.
    • beverly52803
      beverly52803 lee12629

      Posted

      Lee, I'm American also. It sounds as if they press with one of those long Q-tips and ask "does this hurt?" in order to map out the sensiitive areas. Don't think it's an actual test that clarifies anything else, is it(?)...at least from what I have read. Dynia means pain. Sounds as though Suki girl has some proven solutions. Well, at least they worked for her. But maybe they'll work for you as well. Hope so.
    • Suki_girl
      Suki_girl beverly52803

      Posted

      Yes. You can do the cotton bud test yourself with a mirror and a cotton bud. Just press it lightly al around the vulval area and if it feels like a touch, that is fine, if it gives you pain then those nerves are overactive and hypersensitive (registering touch as pain) so that is where the vulvodynia is.
    • tracy12090
      tracy12090 Suki_girl

      Posted

      Yes it is really that simple, I recently had this done it showed up that mine was around the clitoral hood and urethra area. Nortriptyline 10 mg daily was prescribed for a month, I'm now attempting to come off them now things have calmed down. If the pain returns then the consultant is happy for me to continue indefinitely. I'm happy to try it as I'm feeling so much better but in my mind I'm apprehensive to stop. Which I guess is how people become dependent on medication but I also don't want to take them unnecessarily.
    • Suki_girl
      Suki_girl tracy12090

      Posted

      I have adapted well to the amitriptylene - apparently the body adjusts to it. I have been on 50mg for, gosh, I don't know, a least a year, no problems. I have looked it up and there is no reason why someone cannot continue with it indefinitely. People who have chronic back pain do. My consultant said that one I felt the vulvodynia had gone I should stay on the ami for 3 months longer then reduce the dose very very gradually. She said if you come off it too soon, the pain comes back. I am reluctant to come off it because it is so great to be free of that horrid burning hell that affected my ability to function on a daily basis and made me depressed. Thus, I am still on it. I think it may help with the discomfort of vaginal atrophy too.
    • tracy12090
      tracy12090 Suki_girl

      Posted

      50mg still isn't excessive from what I'm reading it depends on the level of your pain. My pain was a new development of nerve urethra pain as my atrophy was becoming increasingly pronounced. As a by product of that the Nortriptyline also helped with the uncomfortableness of the atrophy pinching/pulling/burning of the skin. I would certainly be happy to continue but as I've now stabilised using the Ovestin it's worth coming off a nd test it out. My sister has been on Amytripyline for years on a higher dosage but it does cause tiredness whereas I haven't experienced that myself.
    • tracy12090
      tracy12090 Suki_girl

      Posted

      After 10 days off the Nortriptyline I'm back on them indefinitely! Slowly but surely the uncomfortableness returned. Walking was again pinching and pulling such a normal activity once upon a time :-(
    • lee12629
      lee12629 tracy12090

      Posted

      So sorry to hear,but glad there is a med that helps xxx
    • tracy12090
      tracy12090 lee12629

      Posted

      Thanks it's not ideal taking meds but the alternative isn't pleasan xx.
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