I have been so stressed and so jumbled in the head lately that I really don't know where to begin with this entry.
My last entry described my crazy reaction to Prozac of which I am still feeling the effects. I still have the rash on my stomach and back and for about a week and a half I had the worst entire-skull headaches of my life. I mean, my temples, forehead, sinuses, chin, jaw, teeth, cheekbones, everything throbbed. I actually took a sick day on Tuesday because I was awake all night with a throbbing skull (and that was after taking 2 oxycodones, which hardly did anything). The headaches are finally subsiding, although still lingering a bit. My doctor said it would take a few weeks for the Prozac to be fully out of my system.
Another effect of the Prozac was extreme anxiety, nervousness, and figitiness. In the mornings I would feel like I did the first week of my first year of teaching - just complete terror and nervousness - but without a specific source. It was awful. And it brought me down emotionally. I've had many moments of being in puddles of tears over something and feeling extra sorry for myself.
I can't blame it all on Prozac. The other big issue is that my vagina burns again. I am so discouraged and nobody knows what to do. I have an appointment with Dr. Goldstein in January, but even he's not sure what to do next. And my physical therapist is trying different things but I don't think the latest is working. She wants me to put in a smallish dilator and squeeze and release until I can squeeze no more. I've never actually done it for that long because I could be there for hours. I could squeeze and release all day. But I have noticed that every time I do it, my vagina is sore and extra burny for the rest of that day and the following day. I also have shooting throbs of pain here and there. I don't think I'll be doing that exercise anymore. I just can't see any benefit.
Our friends just had their second baby in less than a year. I am very happy for them (and frightened for them having two kids under the age of 1), but it reminds me of my ever-increasing and impossible-to-fulfill dream of having children. I am so far removed from the possibility of getting pregnant and it makes me cry as I sit here right now typing this. I know that there are other ways to get pregnant, but the thought of having to get pregnant using a petri dish is just too much to bear. Plus, why on earth would we want to have kids now when our sex life (if you can call it that) is so screwed up? When every waking hour is spent going to appointments, doing dilator exercises, going to work, reading about vagina problems, going to the therapist, and taking lots of baths to soothe my burning vagina? It doesn't even make sense to try and bring a kid into all that. But the fact remains that I want to have children. I know I still have time. I'm only 28. But when my vagina is still burning I can't even picture a time when we would even be able to try to get pregnant.
My life, and my husband and I's life together, is passing us by while we try to fix this thing. We live in a small apartment which we keep renewing the lease for because we can't make any kind of commitment to buying a house right now. Why? Because we can't commit to living here forever. Why? Because we had dreams of doing the Peace Corps and living in another country before settling down to buy a house somewhere. But that dream is over. We can't do the Peace Corps because of me. Yes it is possible to live in another country and find the health care that I need, but honestly, that is terrifying. My husband wants a different career, but he can't even really start to think about what that might be because my vagina holds us here. It's like we're on a plane that is trying to land but can't, and just continues to circle the runway. We aren't going anywhere exciting, but we also can't get out and move on with our lives. We're both stuck. We want more for ourselves and for each other, but we can't seem to find the motivation to even try. The vagina is holding us here in this apartment, in this city, in this life. It's not a bad place to live, but we should choose it because we want it, not because it's the easiest thing for all my problems.
14 comments:
I am so sorry that you are feeling so down:( I completely understand!! I know that you have a very big support group, but please do not hesitate to call me if you need to talk or vent or cry or ANYTHING!!
I understand your frustrations. I am your age and my husband and I are going through a lot of the same issues (we want to move, but we feel like we can't, my husband wants a different job, we have spent almost 2 years now trying to figure out what is wrong with me). My pain is different though because it began at the same time I got pregnant for the first time. (And yes, having this pain with a little one is very hard, but it is doable...dont' give up on that!) I was diagnosed with hormonal vulvodynia and it got better after having a baby, but now I have different symptoms and I can't sit, which is actually worse than the vulvodynia! Still looking for good treatment and a diagnosis, but I think I have pudendal neuralgia. If you would like to talk more email me at purposeofpain@gmail.com I have a blog as well, but I am not quite as public with it yet. "Hannah"
Thanks for the comments ladies. I know I'll be okay - sometimes I just need to vent my frustrations. It's a lot to deal with.
It is a lot to deal with:( Venting is great therapy though!! I find it helps me soooooo much!!
I totally empathize with feeling like your life is trapped. I'm in my late 30's and my goals are a bit different than yours, but feelings of overwhelming sadness and frustration are familiar to me.
I hope Dr. G can find something to help the burning. I wonder if topical gabapentin could work for you? (except I'm not sure if you can use it while trying to conceive).
HANG IN THERE!
not completely related to this post but out of curiosity, do dilators hurt you while you are inserting them? I am going to start biofeedback which involves inserting something relatively small but I just would like to know what kind of experience you have had with that & how much pain it causes... thanks.
if it is too painful to insert & take out then I don't think that I can handle it.
I know it's different for everyone. For me, I never had any trouble inserting the smallest dilator and then i worked my way up to the bigger ones. At the moment, the biggest one is painful to insert, but there have been times that it was no problem. I think that even if you have to start with a Q-tip - if that's the biggest thing you can get in there without severe pain - then that's where you start, and the physical therapist can help you build up to more. Also, I've found that clenching and releasing the pelvic muscles a few times before inserting the dilator helps to relax the muscles. You can also do this before taking out the dilator. Hope that helps.
it's just so hard for me to understand why sex hurts but inserting the dilator doesn't... I guess it's because sex involves thrusting/friction and putting pressure on certain areas that the dilator doesn't when just "resting" in there or whatever... I don't know. I hate this whole condition and everything that goes along with it.
Hi, I found your blog recently & it's nice to know I'm not the only one dealing with these frustrating conditions. I was a patient of Goldstein's in '03. He never was able to help me. I'm 28 from NY, married almost 5 years. I have VVS, IC, PFD, severe CFS, severe Fibromyalgia, IBS-C, severe gastroparesis. I think that's it. :) I have to make light of it because things could always be worse. I am actually writing because of your last post. When I read about your head, jaw, temple, trouble sleeping, nervous, etc...I felt like I was reading about myself. I am going through benzo withdrawal. I took Valium orallybfor 7 years for my pelvic floor dysfunction (literally the biggest mistake of my life!). I never misused it & I trusted my doctor. I tried to rapidly get off last year b/c it no longer helped & I went into severe benzo withdrawal. Didn't know what was wrong. I never knew what a benzo was, how after just 4 wks your body is physically dependent, that you must taper no more than 10% every 2 wks. My Dr. let me down & I'm so angry I didn't do my own research. I just trusted him all of these years. When I ended up in this severe withdrawal state not knowing it was from the withdrawal, thinking I don't know what the withdrawal insomnia has me awake for 3 days literally. The 4th day I went to a new Park ave. Big shot doctor. He said it was withdrawal & the way to fix it was 2300mg neurontin, 1mg clonazepam (which is equal to 20 mg Valium. Your Dr may it's not but you'll see it is if you research it). All of this happened in April. I took his drugs, got somewhat stable a few weeks later, researched everything, realized what happened & couldn't believe it was this thing benzo withdrawal. I have been trying to get off the 1mg of clonazepam since. I am down to .38mg liquid compounded clonazepam. I am going extra sloooow b/c the withdrawal symptoms are he'll. Please google benzo withdrawal and jaw pain or temple pain. Please goggle Dr. Heather Ashton too (great advice). I hope I am not out of line, I just really feel it was the huge cut your Dr. Made to your clonazepam that had you in the state of your last post. I never post anywhere but felt guilty not to suggest this. No one should have to suffer like we are both vaginally & I believe benzo related as well. If you think I am wrong, then I apologize & please disregard this. I hope this message finds you well.
Take care :)
M
P.S. I have not re-read this & am the master of typos. Also my iPad changes words on me sometimes so I hope this message is readable. :)
I think there are several reasons that dilators are different from sex. First, the dilators, even the biggest one, are not as big as a penis. Also there is the friction thing which is a huge thing for me. And I think also there's just so much anxiety associated with sex that the muscles probably contract subconciously more with sex than with dilators.
As for the Benzo thing, yes I definately had withdrawal from some drugs and bad reactions, but my doctor is taking it very slowly and hopefully I won't ever have to go through what you did with drugs. It's scary - taking drugs that alter your mind. Right now I'm just taking .25 mg of clonazepam and no prozac. I'm supposed to take that small dose of clonazepam for one more week and then just be on nothing for 2 weeks just to clean out my system before trying something else. Hopefully we will find something that works and doesn't make me crazy. You aren't out of line at all. I appreciate all the information and experience that everyone shares with me. Doctors don't know everything (as we've all found out the hard way) and we need to learn from each other's experiences.
I'm glad things are better for you now. I hope all keeps going okay as you drop it & try something new. I really hope you find something that works. :)
A bit off topic but my gyno jut prescribed nystatin vaginal tablets. Have you used this? I don't know anyone who has. just curious. I know Goldstein told me not to use vaginal meds but diflucan & probiotics are not working. I have had this recurrent diflucan resistant yeast infection since March. Thanks a lot :)
M
Wow, I feel like I could've written this post a year ago. I've bookmarked your blog - wish I had found it earlier. I had surgery on my pelvic floor almost exactly 1 year ago, and it actually solved my problem. I won't say it was a cure, but within 7 months I was able to have orgasms DURING sex - something that had never happened before in my life.
I'm 35, pregnant for the first time, so be assured, you have tons of time. And also, keep up the hard work. When we had surgery, we had decided that it was our last effort - if it didn't work, we were going to give up completely and just do "alternate" sex things. I'll be a regular reader - thank you for being so brave as to share this.
What type of pelvic floor surgery did you have? What did you try before resorting to surgery? It sounds like surgery really helped you. Any negative effects from it?
I had a partial vestibulectomy. The doctor removed the skin below my vaginal entrance completely and pulled the vaginal wall down to replace it. The way he explained it was that the vaginal wall skin comes from a different embryonic source than the skin of the perineum, and it is stronger skin, therefore less likely to have problems. My doctor is Dr. Steege at the UNC Pelvic Pain Center and he is fabulous.
Prior to that I used a topical estrogen (prescription strength) cream for just over a year, in conjunction with physical therapy using dilators. I had used dilators and physical therapy for 3+ years, and while I was gaining muscle control, the skin of the perineum was just too sensitive and tore all the time - so my muscles would get all relaxed and then, when I withdrew the dilator, it would hit that torn skin and the muscles would spasm. I tried every kind of lubricant during penetration, including diaper rash cream, and nothing worked.
Now, with enough foreplay, very slow entry, and me on top, we have success!
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