Has Anyone had Vaginal Re-Construction Or tried Botox??

Hello to all of my Dear Sisters on the Road....

Sorry I haven't been around very much. There has been a lot going on with my sister (personal stuff) and I have been trying to be there for her and her kidlets. Even though I haven't been posting, I have been reading when I've been home...& praying for all of you.

I'm not sure if I have posted this before or not <fog> but wanted to ask all of you about vaginal re-construction. Previously, my docs thought I had a fistula. It turns out after many tests...that it doesn't appear to be that.

Shortly after this (several months ago) my docs informed me that I have what can only be described as a fork in the road (in my vagina). Meaning that I have two separate passages/tunnels down there.

The reason behind this is not clear. It could be because of the way that I was stitched up at the time of the hyst...Or something else. They aren't really sure yet.

My Uro-Gyn & Neuro doc have both mentioned re-constructive surgery. I am very nervous about this, as I have a feeling that it may only make things worse for me. I have numerous other diseases (including nerve damage)...and have put this on the back burner. It does affect relations with dh depending on how he 'navigates' himself when we are intimate - which isn't very often.

My Neuro doc has mentioned the use of Botox in my vagina. I am also nervous about this, as I seem to have many reactions to so many different things. The jury is still out on that one....as well as the surgery. I know that a lap for Endo is in my future, but I need to find the right Gyn for that still.

So, Basically I want/need to hear from those of you who have been through/going through something like this. I would truly appreciate any and all input.

Also, I wanted to mention that the pain has escalted this past week. I can only describe it like this: if feels like someone is tightening up a vice (sp?) in my lower ab - on whatever is left in there LOL! Does anyone else experience this type of pain? If so, what was your dx? I know I have to see the doc, but I am curious to see what you have all found out....

Thanks....S & to each of you....

**P.S. It seems that the swelly belly is getting worse again too. I have had problems with this since the hyst., But lately my gut swells so much that I look about 6 months pregnant. Any ideas on this??? Sorry about all of the questions....xoxo Jude

Hi (((Jude))), I have wondered how you've been doing lately. I'm sorry to hear the swelly belly is worse and you're still having trouble with pain.

I wanted to address the 'fork in the road' problem. Did the DR say if it's a split into two the rest of the way up from where it starts, or just a bridge or other obstacle part way up that divides it into two but then it rejoins after that? If they didn't say, can you reach in and feel it yourself?

I did have a 'fork' due to a vaginal adhesion after my hyst. It was a bridge of scar tissue about the diameter of a finger, a couple of inches in. It divided me into two even though there was only one vagina once you got past the 'fork'. It's an extremely uncommon complication of the TVH/A&P repair surgery so my DR had never seen one before (but luckily, her partner had).

My DR told me I could try to break it myself first ... after a couple of halfhearted attempts I ed out (it hurt and I was too afraid I'd really tear something in there). I opted for a surgery to correct it. That was great!

It was done outpatient, they used versed rather than a regular general anesthesia, I was out only a short time and back on my feet in a couple of hours. She removed the scar tissue, then cauterized and stitched the two areas on the vaginal walls where it had been attached. I had to use an applicator of vaginal Premarin cream 3x a day for 3 weeks to make sure the area healed properly and the adhesion didn't re-form. That was messy but worked like a charm. I didn't need any pain meds other than motrin once I went home, and two weeks later I didn't even feel like anything had been done. It's over a year later now and things feel completely 'normal' to me there now.

I'm not sure why they'd want to use Botox in there but it sounds a little scary to me, IMHO. I'd ask them the thinking behind this and do plenty of research before agreeing to something like that.

About the swelly belly, I wish I could help you there but unfortunately mine is HUGE since this last surgery. I am so sick of walking around feeling like everyone must wonder if I'm pregnant or not! I'll be interested to hear what other sisters have to say about it.

Hang in there sweetie, better times ahead.
s,
-Linda

Thank-you...Dear Linda S

Gosh the fog has been soooo bad lately. I couldn't remember who discussed this with me a while back - As soon as I saw your post I remembered. I'm sorry that you are still dealing with the swelly belly. I hope and pray that you start to see some improvement very soon. I imagine there's still a lot of healing going on inside of you sister...How are you feeling overall??

As for my fork in the road...Both my Uro-Gyn and my Pain Doc (Neuro) have said that I need re-constructive surgery. They made it sound like a big deal. I hope that I just mis-understood them both. They also said that I should be in contact with the doc who did my Hyst. I don't know if I'm ready to do that. I guess I'll have to drag DH to my next appointment. Hospitals are starting to get back to normal now (because of SARS).

I also wish that I could find the diagram that the doc drew for me. But from what I understand I have two separate passages that come to an end (initially they thought one of the passages was open into my ab - but they believe now that it isn't). At first I was terrified - But now I'm wondering if I really need to have this surgery. With my track record, something could happen to make things worse. Does this sound like what happened to you? I may sound like an idiot, but I'm scared to feel it myself. I know this is something that I must do, and I will....Soon...

As for the Botox injection...I would only be having it to help with the pain around the opening. There has been talk about giving it to me in other parts of my body...for the FMS pain, but I don't really feel comfortable with it. I'm still not sold on having it done period....

DH & I bought a small above ground pool. I have been trying to do exercises in it to improve the FMS pain and my general health. I was noticing a difference...But with everything going on with my sweet sister, my routine has been a bit broken up lately. That's okay...She comes first.

As for me still having trouble with pain. My docs think that I may have to live with this for the rest of my life. A combination of Nerve Damage/FMS/CFS/Endo (which hopefully will just disappear one day) and a few other problems. What we need to work out is a game plan. DH is getting rather frustrated that they haven't worked one out for me yet (I've been at the clinic for approx 10 months). I understand why it is taking so long...A combination of SARS as well as the waiting time for different specialists - they are leaving no stone unturned. I know that one day I will feel better....But my hopes of actually feeling good - are dashed. This is something I'm working on with a therapist at the clinic. She is wonderful and very easy to talk too....

Thanks for responding my dear - it means a lot to me. Sending you lots of and more S

Jude:

Wanted to send a and let you know you are in my for a resolution to your issues.

I was listening to a newscast which was discussing which celebs might have had botox treatments and they were saying that one effect of botox treatments to the face can be loss of natural facial expressions.

Given that, I would be very hesitant to have botox injected in to any part of the pelvic floor region (or quite frankly any part of my bod ... it is botulism..and I have a hangup about it).

I would be worried (as a patient, I am not a medical professional) that if they deaden the wrong nerves you might lose and ability for pleasurable sensation and also risk permanent incontinence. Guess it just depends on how severe your pain is and what you are willing to trade to get relief. It's a very personal decision indeed. I am sure you will do your research and find the best answer for you.

I encourage you to go ahead and do a little exploration. For me, the suspense would be too much. Try to take a deep breath and feel for yourself ... then you will have an idea of what your are facing.

Keep us posted on how you are doing.

Dear ((((Michelle))))

I truly appreciate your input on Botox. Basically I have the same fears that you have mentioned. I almost feel that a couple of my docs are trying to strong arm me into trying this stuff...But I will not be a guinea pig anymore!

While I am sure that it has helped many...I am also concerned about the long term effects that are perhaps not know as of yet. I tend to have bad results/reactions...which makes me more fearful.

I will be sure to do a lot more research before I make up my mind....But for now, I am against it. Geez...it sounds like I've already made up my mind I think what I'll do is ask DH to accompany me to my next appointment. I always find that it helps to have an extra set of ears. My last appointment was a bit of a wash out as I could barely keep my eyes open. This happens to me quite often. I don't have narcolepsy (sp?) But I have been known to doze while standing. Good thing I don't drive eh?!

I will go ahead and do some 'exploration.' I know I sound weird, but I am scared to actually feel/know what is going on. Just call me the Queen of d'nile!

I'll be sure to let you all know what happens. I'm waiting to hear back for an appointment next week. I believe it is time to change my pain meds....Either the dose or to try something else, as it isn't even touching my pain anymore. A combination of increasing pain, as well as a tolerance.

Thanks & S ...