Trying to stop VAGINAL VALIUM - so little info about it!

Hi folks,

I came here because in such a large community, I was hoping I might be able to find someone who has been in a similar situation to me. I'm currently trying to stop taking vaginal valium (suppository, 5mg) that I was prescribed for vulvodynia and have been taking nightly for six months. This is an off-label use and there's very little information about it to be found, whether it's with respect to absorption, side effects, or discontinuation, and my doctor when prescribing it was very nonchalant. She that the effect is localized, but also that I might feel drowsiness or "euphoria" after taking it... kind of contradicting the suggestion that it would be "localized" which I noted at the time.  She also said that there are "very few side effects" though, and I was desperate to not be in pain so that was good enough for me. It was pretty clear after a couple months that it didn't seem to be making a difference for my pain, although physical therapy eventually did, and when the compounding pharmacy failed to send out my prescription on time once and I missed two doses, I felt very sick (nauseous, shaky, dizzy, anxious), and I realized the effect was certainly not just "localized."

For the past few months I've also been struggling with some digestive issues too, most notably constipation, and since the valium hadn't seemed to be contributing to the improvements in my pain anyway I asked my doctor if I could stop it and how. She told me I could taper it for "a few weeks" "if I want" or just try to stop it right away. Her suggested taper was really fast compared to what people usually do for benzos, just two weeks each at 1/2 and 1/4 dose, but I guess the idea is that this is OK for vaginal valium at a my fairly low dose.

So I started off by cutting down to one every other night (1/2 of original dose) as she suggested and did that for two weeks. I am now in my first week of 1/2 every other night (1/4 of original dose) and feeling like I'm constantly questioning my entire reality. I feel really strange but my doctor's line is that this shouldn't be comparable to quitting benzos taken orally but from what I've been reading about coming off benzos in general it seems like it might be.

I haven't found literally one single account anywhere on the internet of anyone's experience stopping vaginal valium so I don't know what to think.

My lower abdomen has been painfully bloated and visibly distended to an extent that makes it hard for me to function, which I don't remember ever experiencing before. I have reduced appetite and get nauseous after eating, and the bloating gets worse after eating even a little too so that I dread eating. I've also found myself abruptly lapsing in and out of suddenly feeling like nothing in my life feels right... all of a sudden I'll find myself asking "should I break up with my partner?" "should I quit my job?" which are questions I wasn't asking myself a few weeks ago, or just feel utter despair like "do I even like ANY PART of my life? do I want ANY of the things I think I want?" Or I'll just feel really anxious and overwhelmed all of a sudden and start crying out of nowhere, and I can turn from feeling somewhat normal to feeling like that on a dime. I'm also sleeping badly, waking up a lot every night.

I didn't even research the possible effects of the process of quitting benzos at all for the first two weeks because my doctor was so nonchalant about it that I assumed I would just be fine, but when I did, a lot of what I'm feeling seems to fit. So in that case I'd want to try to just wait for it all to pass and probably slow down the taper. But then I think, maybe these weird emotions are real and quitting the valium isn't really doing anything to me at all, and I need to listen to them. So that's what I mean by questioning my entire reality.

So I'm really hoping I can read stories from other people who've stopped vaginal valium specifically to hear about their experiences, so I can try to calibrate my understanding of my emotions and figure out whether I need to approach this new digestive symptom as a new issue.

Trying to make sense of it all.

thanks.

Hello elema, welcome to BenzoBuddies,

I know you don't want to hear this but I've never seen anyone with your issue but what I can tell you is that everything you're describing sounds exactly like benzodiazepine withdrawal, to include the strange thoughts you're experiencing.

It looks like a slow taper will be in your best interest and we typically suggest reducing by about 5-10% of your dose every couple of weeks or whatever your symptoms dictate in order to stay functional.

I hope we can help reassure you that you can recover from this and while we've not seen your exact situation, we've seen thousands of members recover and I believe you can too.

Please keep talking to us, we want to help you.

Pamster

Colorado Consortium Benzodiazepine Deprescribing Guidelines

Planning Your Withdrawal (Taper)

Withdrawal Support (during your taper)

The Ashton Manual

elema, our buddy Carita used vaginal valium for pelvic floor disorder years ago. She's an RN. You might PM her -- I know she sometimes checks in. She might have some helpful advice. I recall that for her, too, pelvic floor PT was more helpful for her condition. (I, too, have a PF condition -- Carita and I PM'd for several years.)

In the meantime, I think Pamster has given you good advice -- you are in benzo w/d and a slow taper off valium will undoubtedly be helpful. btw, this does not seem like a sensible taper:

1/2 every other night (1/4 of original dose)

You need to maintain a steady, albeit diminished dosage of your benzo in your system to taper. No wonder you are having odd and despairing  thoughts. Really . . . your body/brain is very upset. Evidently the effect of valium is not localized as your doctor assured you it would be.

Is it possible to get another gyno's opinion on this? I'm sorry you are in so much distress.

Best to you,

Katz

Elema,

I have never been prescribed Valium this way, but I also dealt with PG dysfunction (PT helped me, too) and I sometimes took oral valium for the pain. That said, I have definitely heard of vaginal valium before, and I even read somewhere (can't remember where) of another woman trying to taper valium suppositories and really struggling. So you are not alone!

I second everything pamster and katz have said, and you can definitely find support on the withdrawal boards here for your symptoms. In terms of how to taper, consider doing a wider internet search and see what you find if you can't find it here on the site. We have all had to do so much of our own research on this journey because the medical doctors have simply left us afloat in this mess without an anchor. And yes, your sxs definitely sounds like benzo withdrawal. And it's so wrong for any doctor to say that something you insert into your body only has local effects. Maybe it it were a topical anesthetic, but certainly not when it's something you put in a place with mucous membranes like the mouth or the vagina. The body absorbs it.

I did a quick search to try and help and found this:

https://drjengunter.com/2018/02/20/vaginal-valium-another-study-shows-its-ineffective-for-pelvic-pain/

and this:

https://www.pelvicpain.org.au/how-to-use-diazepam-suppositories-for-pelvic-muscle-spasm/#:~:text=It%20also%20has%20potential%20for,unlikely%20to%20cause%20these%20problems.

These sources don't say how to taper the suppositories, but they do say it goes into the bloodstream and can be "addictive".

Good luck and definitely taper more slowly, and please continue to share your story so others can benefit!

Openroad