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Post by omaklackey on Jan 26, 2012 21:23:36 GMT -5
I'm so glad your doing this! It will be worth it I promise!
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Post by Karen on Jan 26, 2012 22:06:03 GMT -5
I hope he responds quickly!
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Post by painttheseconds on Feb 7, 2012 17:10:37 GMT -5
Well ladies. I figured I would give you all an update. I've been a little hesitant because I've made some drastic decisions because of where my pain has taken me the last few weeks. Hopefully Dr. Redwine will respond by this Friday. I can't wait to hear what he has to say and to get all of this behind me.
I ended up going to see the pelvic pain specialist last Monday. Dr. Mosher and his nurse spent almost two hours with me going over everything and doing a really through exam. He felt a bunch of different points on my body as well as touched and pressed a bunch of different areas in and around my vagina. Throughout the exam I was in a lot of pain and was really uncomfortable, but Dr. Mosher felt that it was important to get a full idea of what is going on with me.
Turns out he is pretty positive that I have Fibromyalgia which I have suspected for awhile now. On top of that I have vulvar vestibulitis which is a technical term for painful sex. He thinks my endo is part of the reason why I'm having painful sex, but he thinks the vulvar vestibulitis is part of it as well. He touched me in a few places with just a q tip and I wanted to jump off the table.
My experience overall was really wonderful. Dr. Mosher was very kind and considerate and his nurse was really sweet. She held and patted my hand through out my exam. Dr. Mosher thinks he can help me, but he thinks it's a good idea for me to have surgery. He said it's hard to say right now what pain is because of my endo and what pain is because of the other health issues I have.
I decided to go out on a limb and take his advice at least for now and see how I feel after surgery. He recommended I start using Lidocaine to help with the painful sex part. It helps numb the area around my vagina and I use it at night too. It's supposed to help calm down the nerves and it works really well so far. I used it 15min before my boyfriend and I had sex a few days ago and it did work. It was the most pleasure I've had from sex in a long time. I am also taking 10mg of an anti depressant he recommended. It's supposed to help with all the nerve pain I have been having due to the fibro. I was really hesitant to go on an anti depressant because of my past experiences, but he explained it's more for pain then for depression. I gave in and decided I would try it out and see how I feel. So far I have done ok on the Amitriptyline. He said it will take at least a few weeks to see if it makes a difference. I agreed and he said if I started feeling awful on it or didn't want to do it anymore. He would make some adjustments.
I go back and see him on Thursday. I'm going to start doing injections for pain as well as see if that can at least get me through till I can get to Oregon to have my surgery. After I'm healed from surgery Dr. Mosher wants me to start Pelvic PT again and look in to Pilates classes. I'm looking forward to when I am able to exercise again. I'm hoping if anything my experience with all of this will be able to benefit or encourage others. I got to a really bad place a few weeks ago and that's when I finally realized I can't keep living my life like this. The past few days I've been in a pretty decent place and I'm grateful for that.
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Post by 1234 on Feb 7, 2012 17:17:42 GMT -5
Nicolle, I'm so sorry for all of the pain but your decisions sound reasoned and careful and sound. I am really glad the lidocaine has helped. What pain injections are you getting?
I'm sorry about the fibromyalgia--even if not confirmed, it's another scary disease to think about. How are you doing with it?
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Post by painttheseconds on Feb 7, 2012 17:35:04 GMT -5
Unfortunately because so many don't think that Fibromyalgia is an actual illness it's hard to 100% diagnose the condition. He said his best way of diagnosing that he has done with his other patients is a point test on the body. If a person responds in pain to a number of the points then he said there's reason to confirm that Fibromyalgia is an issue. I responded to all of the points he listed plus he thinks the relentless fatigue I've been feeling as well as my problems sleeping are all good indicators. Honestly when I heard all this news last week. I wanted to crawl in a corner and die. I've felt so helpless and isolated from all my pain. Hearing that on top of everything else made things really difficult. I cried quite a bit, but now I'm doing better. Dr. Mosher said that as hard as it is I have to work on having a positive attitude about this and I have to want to get better. All he does is treat patients with chronic pain and he let me know that he at one point in his life had a chronic pain illness as well. He said that's why he got into the practice. I've gotten to the point where I want to fight and I want to get better. That's the most progress I've been able to make since this all started. I have hope and faith that things are going to get better. It might take longer then I would like, but I'm willing to be patient. www.fmnetnews.com/fibro-basics/symptoms Here's a site that I found that describes Fibromyalgia pretty well. I have to talk to him more about the injections when I meet with him on Thursday. I guess there are a couple different options that we are going to discuss.
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Post by JC on Feb 7, 2012 18:21:30 GMT -5
Hey Nicolle! I feel so bad that you are having such a hard time! I think you've landed in some good hands though. This pain specialist seems to be really awesome and may have been what you needed. And of course, I'm excited about having good sex! ;D I think the antidepressant is worth a try. I've heard many times that antidepressants in low doses help nerve pain so you may feel really great on it! But if it doesn't work out, it sounds like he has options lined up for you to try next. It may take some time to get feeling better again and at times can be frustrating. Just don't give up! It takes time but its totally worth the effort when you feel better again.
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Post by Karen on Feb 7, 2012 20:07:41 GMT -5
I'm glad you're at the point where you want to fight to get better. That in itself is huge. What route you take to get there doesn't necessarily matter, as long as you keep on fighting for help, you'll eventually get it. Fingers crossed you hear from Redwine soon! And I'm thrilled you'll be going to PPT!
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Post by semicolon on Feb 7, 2012 20:21:44 GMT -5
I'm an OT and I find fibromyalgia very enigmatic but your signs seem to fit. Have you ever tried aquatic therapy? Some of my patients really find warm pool therapy very helpful, especially if you have trouble with other exercises. I also have lots of patients on various antidepressants for nerve pain, sometimes you have to try a few different ones and they take a week to two to get up to levels in your body before you can tell if they're helping. That is relatively new for pain, very exciting! There are lots of things to try, and from the sounds of it this doc is willing to help! I like this guy, glad you put yourself out there to see him!
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Post by 1234 on Feb 7, 2012 20:49:58 GMT -5
Nicolle, I'm sorry your last week was so hard. I'm glad you're back willing both to fight and to relax when fighting won't help. I read the link you posted, and I hope the PPT will help you, since the explanation I read there seems to think that at least some of the pain is related to knots in the myofascial tissue.I hope some of this helps make the pain more manageable. Keep us posted on how you are doing. I'm glad that you got an appt with this doctor.
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Post by painttheseconds on Feb 12, 2012 1:10:14 GMT -5
I went and got my pain injections on Thursday. Let me tell you that was quite the experience. Dr. Mosher picked the 4 tightest and most painful muscles in my vaginal area and injected Lidocaine into those parts. Whew having a needle inside your vagina is not the most comfortable thing, but I made it through. The nurse once again was amazing and held my hand. She kept telling me how good I was doing. It was almost a laughable scene when I think about it.
Today my tail bone pain is less and I'm more comfortable sitting. I still have some pain, but nothing like what I was having before. I'm going to see how I do this next week and will probably go and get injections again.
Still waiting to hear from Dr. Redwine...
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Post by Karen on Feb 12, 2012 9:13:15 GMT -5
Yeah, that does sound like quite an odd site! I hope it gives you some much needed relief, though!
Can you call Dr. Redwine and light a fire under him to speed things up?
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Post by JC on Feb 12, 2012 10:32:48 GMT -5
WHOA needles there! Yikes! You are a brave woman! Just goes to show how much pain you're in if you're wiling to go through that! It sounds like it's helping though. Keep pushing for answers!
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Post by painttheseconds on Feb 12, 2012 10:55:18 GMT -5
I'm going to call Dr. Redwine's office tomorrow and see if he's come up with a surgical plan for me. Hopefully I'll get something in the mail from him tomorrow. I just want the freaking surgery already.
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Post by painttheseconds on Feb 12, 2012 17:39:39 GMT -5
Well I got my reply from Dr. Redwine. I guess it came later on yesterday after I had checked my mail box.
He thinks there is a likely chance that I have invasive endometriosis of the pelvic floor, which includes the possibility of obliteration of the cul-de-sac. He sent me an article that he wrote about bowel resections and treatment of the Obliterated cul-de-sac in endometriosis. Most women he has seen who had these same issues spent the night in the hospital and were discharged in the morning. He said surgery has ranged anywhere from 3 to 7 hours with his previous patients.
He also mentioned that he thinks there is a chance I either have abdominal endometriosis or diaphragmatic endometriosis because of my rib pain that I have been having on my right side. He wants me to give his office more details of that pain and then schedule surgery.
I'll be calling his office tomorrow to schedule surgery and figure out lodging, and insurance. I should be happy. This is what I've wanted, but there's a big part of me that is absolutely terrified. I know I will be in the best hands, but I'm still really scared.
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Post by Karen on Feb 12, 2012 22:03:06 GMT -5
Well, you still have a few pieces to put together with insurance, lodging, etc., so I can imagine there's still a lot of uncertainty. Take it one step at a time. I hope he's able to get you in soon!
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