Thursday, October 6, 2011

I took the Summer Off...

…and then a bit more after that.  Who knows if anyone is still even reading my blog.  I don’t blame you if you’ve abandoned it, since I sort of did - at least temporarily.  It’s not that I had nothing to say – there’s been plenty to talk about and my problems are far from over –I guess I just wanted to take a break.  I’m a teacher so I was taking the summer off from work and from blogging I guess.

I won’t attempt to try and remember everything that I have missed writing about these past 4 months.  Mainly, I still have pain with sex and I still have no desire for sex. Those are the two big problems that we are still working on.  We can sort of have sex, but it never goes all the way because if it’s not hurting at first, it starts hurting after a few minutes of friction.  We’re trying all different kinds of lube.  So far the best combination is coconut oil mixed with Slippery Stuff.  The coconut oil lasts longer and the Slippery Stuff is thicker so they both serve a purpose. I have some other kinds coming in the mail that are supposed to be good too.  We have tried Good Clean Love once,but I felt a lot of burning.  I don’tknow if it was the lube or something else since we only tried it once, so I’ll keep you posted on that.

We decided to tryout a new doctor to see if we can get some other ideas on how to fix my problems.  Dr. Goldstein definitely helped and I would recommend him, but lately he’s seemed a bit flummoxed on what to do next – he said that usually people are cured by now and I’m not.  Last week we went down to Chapel Hill to the UNC Vulvar Pain Clinic.  I saw the Physician’s Assistant of Dr. Zolnoun, Elisabeth Johnson.  She was really nice, had a good sense of humor, and made me feel as comfortable as one can feel in that situation.

Elisabeth had a very different take on what my problem is: She asked a lot of questions about clenching of teeth, headaches, constipation, anxiety, tiredness, etc. during the exam.  Then she did a very thorough Q-tip exam.  She feels strongly that it is a nerve issue, not a skin or muscle issue at this point.  She said they see a lot of the above symptoms in patients similar to me and they treat this as a nervous system issue.  Essentially that my nervous system is a bit out of whack and not regulated as well as other people's (I understood it as a heightened sense of tension that displays itself both psychologically and physiologically in a variety of ways).  She said it helps explain why I can feel pain in different ways and places from day today and she even said my exam was "inconsistent.”  So basically they're trying to put that in order first.  They put me on low doses of Propronolol (a blood pressure medicine) and Cymbalta (a depressions medicine), however neither of them are meant to treat blood pressure or depression issues - they are meant to treat the nervous system somehow.  They have apparently had success using drugs to help regulate the overall nervous system and then isolating any issues down there (even stating that sometimes they think the issue is one place and once the nervous system is under control they find the true problem is different than they initially thought).  So we go back to UNC in 8 weeks hopefully with a more regulated nervous system (which could also help with some of the other seemingly unrelated issues I have, like constipation, clenching my teeth, constant fatigue, etc.). She mentioned the possibility of a nerve block at some point, but said she wouldn't know until the systemic issue was corrected.  She was hesitant to call this Pudendal Neuralgia because she doesn’t feel comfortable diagnosing me yet and because she has read all the horror stories online and she doesn’t want me looking it up and getting freaked out.  So I won’t.  I’ve read many blogs of women who have Pudendal Neuralgia and it sounds terrible. But I’ll just wait and see what happens.

So far the only thing the drugs are doing is giving me stomach problems.  The doctor said that the blood pressure one can cause nausea at first, but I’ve had little nausea, a little constipation, and a LOT of gas.  I hope it goes away soon.  I can’t be farting these deadly-smelling farts while I’m teaching a room full of 7th graders!  But I’ve been on the drugs less than a week so we’ll see what happens.

This is long, so I’ll stop.  If you’re still reading my blog, thanks!  I’ll try to do a better job of keeping you updated.

24 comments:

SS said...

I’m sorry you’re still having pain. :(
I’m fascinated by a couple of things. First, the jaw clenching, which I also have. My pelvic PT and yoga instructor have both mentioned that the jaw and pelvic floor are related- that if you have tension/hyperactivity in one area, you likely have it in the other. Yet I’ve never heard a doctor mention this. The other is the use of propranolol, which is something other than the usual meds you hear about for V pain. I actually have high blood pressure and take a different type of med for it (not a beta-blocker, which is what propanolol is) so I wonder if this could be an alternative for me.
Thanks for updating. I really, truly hope this new approach is successful for you! Btw, I just read the blog of another woman who sees Elizabeth Johnson http://brokengirlfootprints.blogspot.com/

Anonymous said...

I'm still reading! And I am at the same place too. Sex for a few minutes and then things start going south. it's super super frustrating... I just saw goldstein a month ago and i am on the same regimen, the hormone ointment and valium suppositories, but both irritate SO MUCH that I havent been using them. Did you experience irritation with both of these things?

-Cristina

Esther said...

I'm still reading! All of the v-bloggers I read have taken a break once in a while, or even multiple times. I took one last winter. No worries!

I'm glad you have something in the works. Best wishes! I hope it helps you. I have a lot of those symptoms, so I'm interested to see how your experiment turns out.

Anonymous said...

I am reading as well! I just got botox myself a few weeks ago and it seems to be helping that issue (i.e., muscular tightness) but not things overall, which I hoped it would. Still have burning in the urethra (which wasn't injected), for example. Anyway, best of luck with this new protocol!

Anonymous said...

I'm still here as well. I just started PT for vulvodynia pain. It's been 2 years of trying to figure out what went wrong after a yeast infection that never went away and I just wanted to let you know that you're blog has really meant a lot to me during all this. I've been reading for a while but never commented - it's all a bit heart breaking and I am just now starting to reach out about it. Would love to hear how your treatment at UNC is going. I'm debating a visit to Dr. Goldstein if PT doesn't do the trick. I've never been on birth control though and I feel like a lot of his treatment methods are grounded in fixing BC damage so I'm not sure I would be a good candidate for him but maybe UNC. Thanks for the hope.

e.

Becca said...

I've pretty much read through your whole blog tonight. I'm so thankful I found it. Its so refreshing to see my feelings in words, even though my experience has been a little different, the feelings are the same! I hope things continue to improve and that soon you won't have any pain.

Anonymous said...

just read a whole bunch of your entries. going through a very difficult time right now as DH gave me an ultimatum to "fix it or we're done". lots of pressure and stress are obviously not helping, but knowing there are other women experiencing this helps immensely. keep up the efforts, you WILL be successful!

Anonymous said...

I just wanted to check in and see how you're doing. It's been a long time since you've posted. I'm going through the same thing and would love to hear about your treatment at UNC. Thank you again for sharing, it's really brave and I can't tell you how much it means to us all.

Anonymous said...

I am a patient of Dr Goldstein as well. I just got two Botox injections in Feb. There are days when I feel so normal. But then I just used the bigger dialtor last night and I am burning again. This is so frustrating. I have been in pt for 9 months. The botox has helped so much but I just can't understand why the pain is still here. You haven;t posted since Oct. Just wondering how you were doing. Can you please update. I really enjoy reading your blogs.

Husband said...

Thanks for the post, I am looking forward to hearing what your results are. We are trying another approach as well, we got the same feeling as you with Dr. G "but lately he’s seemed a bit flummoxed on what to do next – he said that usually people are cured by now and I’m not." We are currently doing hormone replacement therapy, using bioidentical progesterone. It has helped keep my wife's PH down and she has not had a yeast infection since she has been on it. The down side is that the pain is still there.

Anonymous said...

Dr Goldstein suggested Zoloft for me too. I refuse. My Primary thought Cymbalta was a good choice for pain. When I asked Dr G he said he didn't like the side effects coming off the meds. I was wondering how you are doing on the Cymbalta and if it has helped with pain. I literally check your blog daily to see if you updated. We are going the the same Dr and I like to see how you are progressing. Please update.

Anonymous said...

I've been dx with IC, CFS/FM, IBS-C, VVS for the past 9 years. Severely. I thought it was hopeless. It's the reason I don't have kids. It's taken so much from me. It's been disabling Much of the time. Out of desperation after new year's eve (I could not let another year go by like this), I decided to try ANYTHING. What did I have to lose at this point? I had tried 8 years of PT (beyond basics PT) in manhattan, so many meds...nothing worked. While googling in January, I came across posts of patients saying Dr. sarno's method really helped them or cured them. I scoffed at first. How could THIS help? This is physical. I opened my mind & read the "mind body prescription" by Dr. sarno. When you read it, you see yes it is really is physical & there's something you can do. I cried! I had hope! I read the book a bit everyday. In Febuary I took dr. Schubiner's online class. He expands dr. Sarno's method. I am not cured yet but am helped tremendously. Please anyone who is reading this with any kind of ailmen (even allergies & dermatitis. Crazy but true!), look into these doctors. I never Believed that the mind could have a say on the bottom. Plus I'm not mentally ill. It doesnt matter because all of us have past & present stressors that we have. They unknowingly are changing our HPA axis, hormones, etc...you have zilch to lose. Check this out. I always thought other people got better but my case was worse, nothing could help. It's not true. We can all be helped. All the best :)

Anonymous said...

*not bottom, BODY :)

Anonymous said...

Would love for you to post an update! I check your blog alot but haven't seen anything new from you. Hope you are doing well! Please Post!

Anonymous said...

Just checking in. I suffer from similar symptoms and your blog has been a great source of comfort and support. Would love to hear how your doing and whether your new treatment is working. Hope you are well.

Anonymous said...

I'm not sure if you're still working on this blog, but I would love to know who your pt is, and also which clinic you were seen in at the U of M. I'm starting in again on trying to deal with a similar set of issues (after 6 or 7 years of this), and would love to connect with such a good PT as yours! And maybe not flub around with drs trying things that will make it worse...

Anonymous said...

(oh, wait, it may not have been at the mn clinic, I realize, sorry)

Carrie said...

Have you heard of The Women's Therapy Center in New York??? I'm going in June (also a teacher so I had to put it off until then). They are specialists in treating vaginismus and vulvodynia. They have treated successfully SO mANY women who have the same struggles.

Nubianbeauty said...

Hello. I am experiencing similar symptons. I came across this blog when seeking answers. Are there any updates that you can share?

Anonymous said...

http://www.pelvicpainhelp.com/blog/why-stress-triggers-and-perpetuates-male-and-female-pelvic-pain/

I fully cured my severe pelvic floor (IC dx too) and severe vulvodynia (vestibulitis) after 12 yrs, I'm finally at 100%. I've been on this healing journey 2 yrs. A combo of advice in the article and deep belly breathing, EFT (google the science behind it), NLP also dr schubiner at unlearnyourpain has good info too. I went to the best drs in NYC (moldwin, glazer, Goldstein) and the top PT (stein) for many, many YEARS. The answer is not there. The is a problem with the sympathetic nervous system. The fight of light is stuck on. It's a REAL physical problem, with REAL horrible pain! that you do NOT Want to feel...and it can be fixed. Muscles can be relaxed when the nervous system is temped down. Anamsong.com has info too. Best of luck to anyone reading this. To be able to wear sexy undies, sit without a cushion,wear skinny jeans, have sex, use soap in the shower...it's like a dream. I know your hell. It's not permanent. Mainstream docs no NOTHING of this and most health ailments! best of luck! :)

Anonymous said...

PS forgot to add dustienne miller has good info and free guided imagery. Also, some other ways I've temped down my nervous system also that you can look into: acupressure (similiar to EFT), reiki, reflexology & shiatsu. Not to just relax. They turn down the over vigilant sympathetic nervous system. Please research this. Once you do you will see the science behind it. Mind over medicine is a also a great read. The author overcame vestibulitis herself. Much love. I remember the suffering.

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Anonymous said...

Please come back! Did the meds help? Hope you are doing well and pain free