My FEELINGS

My husband mentioned to me recently that my last few posts have been very straightforward and informational, but that I haven't expressed many of the feelings that I felt during the doctors' appointments.  And expressing and understanding my feelings about it all is a crucial part of the emotional part of my healing process.  So here I will talk about my feelings!

I think part of the reason I didn't mention feelings in my Goldstein Visit #3 post was because there was so much information to get across and I really hadn't processed it all emotions-wise.  What I didn't mention about that visit is that when Dr. G was examining me and poking at the urethral spot that hurts, I started crying.  I wasn't crying from the pain and I knew that at the time, but I also wasn't sure why exactly I was crying.  As we've discovered, it often takes me several weeks of reflection to realize why I was crying two weeks ago!  Well I've figured it out.  The tears had been building all day and they finally came out on the examining table - probably at that moment because I was in such a vulnerable position.  But I realize now that I had been worrying all day about the fact that I had a NEW problem.  I knew that the tissues were healing, but I had this new pain in a specific spot and it was disheartening.  Before I even went in there I knew that this urethral spot was a different issue.  When I first saw Dr. G in April he said I'd be having pain-free sex by the end of this year.  I knew then not to get my hopes up too high, but I did hope that he was right.  However, he wasn't.  This doesn't mean that I blame him or don't think he's a good doctor.  He has helped me tremendously and he continues to help me, but it's very discouraging to know that I'm not fixed, that I have another issue to tackle now.  Was this pain always there or did it just start?  I think we might never know.  It may have always been there, but the other issue was so much more painful that the urethral pain took a back seat; or maybe it just came about in the last couple months.  It doesn't really matter; the tears were flowing because I knew that my problems were not solved.  I knew that I wouldn't be having sex by the end of this year.

My vagina continues to burn and that is discouraging.  I don't know how to make it stop and it is also affecting the progress that my husband and I are making together.  I don't want him touching my vagina when it's burning.  And we were getting close to actually using the penis!  It feels like a step back so I'm discouraged.

I just hope that the Valium suppositories will help relax my pelvic floor, and in turn make the burning cease.  If not, I guess I'll have to take another trip to D.C. and possibly to a urologist.

I have not given up, and I never will.  I do still have faith that this issue will be solved.  I do still have faith that I will be able to have sex with my husband and that I will WANT to have sex with my husband.

Recently someone wrote a comment on a very old post that I wrote about vaginismus.  Among many offensive things, he said that I should become a nun, or at least celibate, because sexual dysfunction is God's way of enforcing population control.  Well, at first I was pissed and offended by his remarks; then I was just amused at how ridiculous they were.  I am hesitant to even mention his comments because I don't want to give him the attention that he so obviously craves; nor do I want his negativity to infect my blog.  But I'm going to put a positive spin on it.  I've had a few days to reflect on what this guy said and although his comments were offensive and ludicrous, they have actually given me more hope.  Because it has made me realize that I never once considered giving up and just being celibate.  Not once.  (And of course for completely different reasons have never considered being a nun either).  That has never entered my mind as an option.  I have my days where I feel discouraged and want to quit all the doctors and all the exercises, but not ONCE have I ever considered giving up.  So his comments made me realize that I am strong and that I am a fighter.  I'm not going to give up ever.  I will continue to fight this until it is resolved. 

So, I had a revelation, a realization that I am stronger than I have given myself credit for.  I mentioned the above comments to give context to that revelation, and for no other reason.  I hope to continue using this blog as an honest place for me to vent my feelings as well as a place for women to go to ask questions and answer questions; and a place for women (and husbands, boyfriends, or partners) to feel like they are not alone.

I'm feeling a bit discouraged...

And hopefully it won't last.  But here are the reasons why:

• When I do my dilator exercises lately or I go to PT, I leave just feeling like my vagina has taken a beating.  I'm sore.  And maybe that's okay to be sore when you're working a muscle, but it's still not a pleasant feeling.  And I was so confident that I would just fly through PT this time because the atrophy in my vestibule is so much better, but I guess maybe I was a little over confident.
• The random burning has returned.  It's not nearly what it used to be, but still, I thought I was done with that.  So now I have to take breaks from the Estradiol sometimes when the burning gets to be too much, which then makes me think that I am prolonging the healing of the atrophy.
• I haven't had my period in two months.  Some may say this is a good thing because I haven't had to deal with all the crap that comes with a period, but it makes me feel worried.  I have always had a regular period, on or off birth control, until this last time that I went off BC.  I stopped taking it in March and ever since then my period has been erratic.  You'd think that now that I'm getting my hormones closer to where they should be that my period would be more regular, but so far that is not the case at all.  And every now and then I'll feel crampy or moody and think, okay, my period is finally coming, but then it doesn't.
• My psychiatrist continues to increase my dosage of Clonazepam (anti-anxiety) because I still haven't felt any decrease in anxiety.  I'm up to .5 mg in the morning and 1 mg in the evening.  But how am I really supposed to know?  It's not going to be some magical change is it?  How do I know whether I'm feeling less anxiety now than I did when I started taking the drug 5 weeks ago?  Can someone tell me how I'm supposed to feel with less anxiety?  I've felt this way for so long I don't know how to recognize non-anxiety.
• All of this has also decreased my desire to even try doing intimate things with my husband.  We're supposed to do a version of the naked cuddle most days (whether it be full-blown with emotional stretching or just a quicky), but I just haven't been in the mood lately.  I think it's just because I've been a bit down lately.

The other day when we did a naked cuddle I just started crying.  I couldn't explain why, I couldn't describe my emotions (I'm famous for this in therapy - I'm never able to verbalize how I feel and why the tears flow).  It always takes me a while to realize why I was crying several days before.  And now after writing all this down I guess I realize that I was crying because of all of the above.  I'm just discouraged.  I'm hoping that it's just a temporary thing.  I know that PT can go up and down - one day it's great and the next it's painful.  I guess I'm just ready to be done with all this.  I feel like I'm getting so close, but then a PT appointment makes me sore and it feels like a step back.  Maybe I'm just putting too much pressure on myself.

I do still have hope.

Update

It's been a while since I wrote anything on this blog.  I guess I just wasn't in the mood.  But I do have some updates.

I started using the Estradiol gel about 6 weeks ago.  I'm supposed to apply it to the vestibule twice a day.  At first, I couldn't do it that frequently.  It burned and itched like crazy.  I was applying it three times on, one time off for a while, but it was still bothering me.  Finally, I called the doctor to find out if there was anything I could do to relieve the discomfort.  He told me to lower the frequency because the last thing he wanted was for it to become unbearable to me.  I asked him about using Vitamin E down there, but he said he really didn't want me putting anything down there except for the Estradiol.  So anyway, I don't know what happened, but it's like all I needed to do was talk to him and the irritation basically stopped!  It's so weird.  But it really doesn't bother me at all now.  So I've been applying it twice a day for several weeks now.  I guess I just needed to build up a bit of resistance for it.

On a possibly related note, you might remember that I was on my period (blah!) when I saw Dr. Goldstein 6 weeks ago, but the weird thing is that I haven't had my period since!  I stopped taking birth control about 9 months ago, but BC or no BC, my period has always been very regular.  I can only remember maybe one other time in my life when my period was this late.  Is it just a coincidence or could it be related to the fact that I'm putting hormone gel on my vagina?  If anything, I would think that the attempt to bring my hormone levels back to normal would help in making my period more regular because that's part of their job.  I dont' know, it's weird.  I keep feeling like I'm having cramps, so I put in a pad expecting it to start any minute, and then nothing.  I don't know what's going on with that.  In the back of my mind I'm thinking, okay well I'm going to Italy in a month so maybe if my period can wait another week or two I won't have to deal with it while I'm overseas.  But hey, do our periods ever choose the convenient option?  I don't think so!

On the emotional side, we are making slow, but steady, progress.  We have moved up to having genitals back in the picture.  Whoa!  It's been a long time.  We are doing what the therapist calls the "quiet hand".  This is where I place my husband's hand on the vagina area and he just rests it there.  No rubbing, no insertion of anything, it just lays there.  You wouldn't believe how emotional the first time made me.  It seems so simple, but it was really hard for me.  I don't know why.  I trust my husband completely; I knew he wouldn't go any further than what we agreed, but I was still scared.  I have built up some serious fear in my head through all of this.  After the first time we tried the quiet hand, I burst into tears.  At first I was disappointed that I didn't feel any kind of desirous feelings; even though I knew there was no possible way I would, it was still sad to me that I still can't feel that.  But we've done the quiet hand a couple more times and it's much better now.   Slow baby steps.

Lastly, Dr. G said that I wouldn't feel any difference with the Estradiol for at least 6 weeks.  Well it's been 6 weeks.  Sadly I do not feel any more horny at all.  I guess that part takes longer.  But I will say that my vagina is more moist these days.  Not a turned-on kind of moist, but just a general moistness.  So I guess that gel is doing something.

The Naked Cuddle

In our quest to bring some comfortable intimacy back into our relationship, my husband and I have tried many things. When we first started seeing the psychologist we had to go through a sort of trial and error period before we found what really works for us.

We started trying to bring back intimacy by watching erotic videos, doing massages, blindfolding and tickling with a feather, and playing naked Twister. However, we eventually

discovered that we really weren't advanced enough for this stuff. Watching the erotic videos made me so discouraged because even though they did make me a bit aroused physically, I felt nothing emotionally. I found it so hard to explain, but as women, being turned on is not just about the physical, we have to feel it in our heads too. And I just don't feel it.

The massages, feather, and Twister were all kind of similar in that they were sort of fun, but just weren't exactly what we were looking for. Emotions are so hard to explain, but I guess I still felt some sort of resistance (and sometimes dread) with those things.

Even kissing was off the table at one point. Which reminds me, I should tell you that since the beginning of therapy, touching genitals has been off the table as well. I just can't handle it. It's not that it hurts to be touched there, not physically at least. But it just tears me up inside that being touched there does absolutely nothing for me mentally. It just makes me uncomfortable. We're slowly bringing kissing back in, but so far we don't use much tongue. When I write it out here, it almost doesn't seem to make sense. It's like, well, if you're comfortable kissing without tongue, what's the difference if you just add the tongue in? I don't know! I'm just not ready! It's like I'm a teenager experiencing all of this for the first time. It breaks my heart that I cannot give more, but I just can't. When we first started talking about taking away certain activities I would burst into tears. Even though I felt a huge sense of relief when we decided not to touch genitals, and then later not to kiss certain parts, it also hurt me so much that even something as simple as kissing had to be removed because of me, and that taking it away made me feel relieved. I felt like I wasn't even worthy of being a wife if I couldn't even bring myself to kiss my husband.

So on to the naked cuddle. After many months of trying different things, we have landed on the naked cuddle. It is something that we are both comfortable with and it does not give me that feeling of dread or discomfort. Basically it started with just getting naked and laying there cuddling. Over time we are gradually adding in other activities to the naked cuddle. We started with kissing the arms and we've progressed to stomach, back, chest, neck, and ears (this was over many weeks). So that's where we are now.

My husband is so wonderful with all of this. Sex and other sexual activities really are off the table for him. Obviously he wants those things, but he is fully committed to my healing process. He gets excited for the naked cuddle just like he would if it were sex. We are making slow progress and I want it all to just be fixed, but I have to be patient and celebrate the small steps. I have to keep reminding myself to celebrate the small steps.