Extended Dilations, Hormones and More

It's been a couple weeks since I got the Botox injections in my Pubococcygeus and my Puborectalis muscles.  It is really hard to tell what's happening down there, but I think that it has made my muscles more relaxed.  It's easiest to feel this when either the PT is working down there or my husband is helping me dilate.  When I do it myself it's harder to tell any difference, but when they do it, I (and they) can tell that the muscles aren't as resistant.  So that's good news and hopefully a good sign for things to come.

My therapist recently went to a seminar for sexual pain and among the doctors there were Dr. Goldstein and also Dr. Pacik.  She spoke to both of them about me.  I have never seen Dr. Pacik, but she wanted his opinion on what to do after getting botoxed.  His procedure is very different from Dr. G's.  Dr. Pacik puts the patient to sleep to administer the Botox and when she wakes up she has a dilator in her vagina.  Now this is usually for cases that are much more extreme than mine - I can get a dilator in my vagina with no problem and  no anesthesia.  However, Dr. Pacik feels strongly that women with any level of pelvic pain should have a dilator inside for many hours each day.  I believe his theory is that having the dilator inside for that long will help to retrain the muscles and get them used to having something in there.  He feels strongly that this is part of the process.  Dr. Goldstein, on the other hand, thinks this is a bunch of malarkey.  But my therapist thought there was no harm in giving it a try so I talked to my PT about it and she said to go ahead and try it (my PT had never heard of doing these extended dilations before).

The longest I've been able to stand having the dilator inside is about 40 minutes.  It's actually harder than I thought it would be.  I thought I could just lay there and keep that dilator in there for a long time with just slight discomfort.  But it actually becomes more and more painful the longer it stays in.  At first I tried it with the largest dilator, but it pushes in the top spot that is very tender for me (12 o'clock on the inside - basically where the G-spot is, where the urethra is as well).  So I tried going a size down.  This helped a little, but it's still painful.  Another problem is that it really hurts to pull it out after having it in there for so long, even though I've lubed it up like crazy.  It's like my body absorbs the lube and by the time I pull it out there's really none left.  Yesterday I tried relubing every 5 minutes or so, but it still felt painful every time I pulled it out.  I guess I'll try the extended dilation a few more times, but as of right now I feel like it's causing more pain than actually helping.

My hormones were retested a couple weeks ago and my testosterone is finally within the normal range.  However I have to keep using the Androgel - 1/2 gram rubbed on thigh each day - indefinitely.  Dr. G's nurse said that some people have to keep using it forever to maintain the right levels, while others are able to wean off of it eventually.  I didn't realize this, and although it's not a huge deal, I really don't like the idea of having to put T gel on my legs every day for the rest of my life.  It makes me hairy and pimply.  If it actually gave me a sex drive I might say that it's a fair trade, but it doesn't so I'm not feeling the motivation to do this forever.  Hopefully it won't be forever.

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.

Back to PT, Back to Dilators

Well I took a three month hiatus from PT and dilators (doctor's orders) to focus on healing the atrophied tissues in my vestibule.  The atrophy is healing quite nicely due to the Estradiol gel.  It's not healed all the way, but healed enough that Dr. G. gave the go ahead to start back with PT.

What the EMG readout looks like (flexing versus resting)

During my first 'back at PT' appointment, we did sort of an overview.  I was hooked up to the EMG machine to find out my resting PC muscle number and PC strength number.  The last time I did this EMG thing, my resting number was 7 (I don't know the units, sorry).  The goal is to get it around a 3 so I was pretty far off.  Now I'm at a 5.  Making progress!

PC Muscles

My PT also did a general internal exam with her finger to check out the situation.  She could definitely tell that there was much improvement.  It's funny because I didn't do any muscle work in the last 3 months, but just healing those tissues made my muscles relax significantly.  I'm so glad I went to the specialist.  We could have been going on and on with PT forever and never really solving the problem because the healing had to start with the atrophy, not the muscles.

So here is my homework from PT:

1) I must stretch every day, including legs, back and any stretches that really get into those PT muscles. 

2) I'm supposed to stretch with my husband!  We are supposed to sit back to back with our legs out (and believe me, just that is a true stretch for both of us since we are the two most inflexible people on earth) and then bend forward towards our toes.  Then we're supposed to sit up, put our arms out to the side parallel with the floor and pivot left to right. I admit we have not tried this yet, but we better since my next appointment is tomorrow!

3) About 2 times per week I need to dilate - using small dilator internally to make circles, figure-eights and putting pressure around the pelvic clock at each hour. With a slightly larger dilator, I'm supposed to do a prolonged stretch (leaving it in there for 10ish minutes).  Oh, and by the way, the day I don't have to dilate anymore will be a glorious day. I am so tired of that lubey gloppy mess!

4) Kegels.  Quick Flicks (clench 3 seconds, release 3 seconds about 10 times per day) and Long Holds (clench 10 seconds and release 10 seconds about 10 times per day). 

Lots of homework!

I dilated for the first time yesterday.  It was actually a little tough, but I'm hoping that I just need to get back into the swing of things.  It was painful to go around the pelvic clock and I think I went too big on the prolonged stretch.  I'm going to try a size down next time.  My PT told me that there should be no pain and if there is, it's too big.  So I'll just work my way up. 

I will not be discouraged!  I know that this time around will be different.  I have a lot of hope and confidence that PT will work this time and that it won't even take that long.  I can just feel it.  The key was getting those tissues healed.

Positive thoughts - I'm getting better at those these days.

Some Positives

Okay so mostly I just want to complain and be sad and frustrated about all this, but there are some good things going on so in this post I will focus on those.

Last week my physical therapist told me that I can alternate the days that I do dilator exercises and stretching exercises. This may not seem like a big deal, but it is. That means that I have one less thing that I have to do every day! I am very excited about this and even in the last week I feel more relaxed than I have felt just knowing that when I get home each night I have one less thing on my plate.

My previous post was complaining about exercising. My feelings about exercising haven't changed much, but I do have a little positive exercising news. My wonderful husband, whose perpetual optimism is my lifeline through all this, continues to try and think of ways to make my life easier while I continue to work through all these problems. He has offered to exercise with me (even though he's in great shape and whatever we do really wouldn't be a "workout" for him) and he has tried to make suggestions of things that I can do. So this past weekend we went outside and played tennis! The weather was perfect (about 55 degrees) and I really had a lot of fun. We had so much fun that we actually played on Saturday and Sunday. It was great to get outside on a sunny day and run around a bit. Now that doesn't mean that my work week exercise problem is solved (not at all), but I do feel good that I got off my ass this weekend and exercised.

My husband really wants me to be able to celebrate every step of this process. I have a hard time with this because I just want to be fixed and moving up a dilator size just doesn't seem that exciting to me. But I know he's right so I am trying to focus on the positive and really celebrate each moment.

So here I am: today I am celebrating the fact that my daily routine has been shortened and that I exercised this weekend! It's a start. And I am in a pretty good mood today. I'm sure you know that when you have this problem every day is touch and go. I never know when a bad mood will hit me, or when I'll just feel completely down and defeated. But I also never know when I'll wake up and feel encouraged and positive. Today is a positive day and I'm thankful for it. I'm sending you all virtual positive feelings as well and I hope that you too have some positive days.