Friday, October 22, 2010

Goldstein Visit #3

Well, I don't even know where to start.  There is a lot of information to share.  It helps me to break it into categories so that's what I'll do:

The Vestibule:
It appears that my vestibule is pretty well healed.  I didn't really have much pain with the Q-tip test, so that's good news.  Dr. G said he may take me off of the Estradiol, but he wants to learn the results of my hormone test beforehand.  I would be shocked if my estrogen is where is should be, but according to my vagina - Dr. G thinks I have some good estrogen down there.

Hormones:
I'll get the results back next week, but like I said, I just don't think there's any way my hormones are where they should be.  Dr. G did prescribe Testosterone gel that I am supposed to apply daily to my legs.  He also said that I should rotate the spot of application because it can make me hairy!  (yikes!)  He said it also might cause more acne.  But he also said that it could help with my libido and give me more energy, so that is a trade I'm willing to make.  Depending on the results of my thyroid test, we might just stick with the testosterone gel for now before trying other methods to increase my energy.  He said he doesn't want me trying too many new things at once - and I agree.   

The new (or is it?) problem:
Lately during PT, I've been feeling pain at the 12 o'clock spot, but not in the pelvic muscles - it's actually where my urethra is.  I told Dr. G about this and he went in there, and it was, in fact, quite painful.  He's not sure what to do about this, but he mentioned seeing a urologist (great, another doctor).  However, like I said earlier, he doesn't want me doing too many new things at once, so the urologist idea is tabled for the moment.  This problem actually made Dr. G question himself - he said "is this new or did I miss it the last time?".  I don't know the answer to that question either.  Maybe it was there, but the other problems were more prominent.  I don't know.  But it's definitely there now.


The burning is back:
My vagina has been burning on and off for about the last two weeks.  Dr. G actually has no answer!  He says from a visual standpoint, everything looks burn-free.  He actually admitted that he wasn't sure what to do about that.  In a way, I'm disappointed that he didn't have a solution for me, but it also makes me trust him more.  It's hard to trust someone who thinks he knows everything, and now Dr. G has proven that he doesn't think that - that there are things he doesn't know.  And to me, that makes him a better doctor.  With that said, I hope he/we can figure out what all the burning is about.


The discharge:
I told Dr. G how I've been having rivers of discharge for the last three weeks and he said, "yes!  Your ovaries are working!".  Apparently, normal women have a lot of discharge and it's nothing to worry about (however it is quite bothersome).  But it made him very hopeful that my estrogen levels have risen because now my ovaries are doing their job.  In his words, "most women are dry as the Sahara because they are taking birth control.  This is not normal".  So okay, my leaky vagina is normal.  Yes! One point for me!  I used the word normal in the same sentence as vagina!

Estradiol info:
I found out exactly what the base was in my new Estradiol gel - it's Acid Mantlebase - Dr. G says that it can be less irritating for some people because it has lipids to hold in moisture and act as a barrier and that it has an emollient affect.  My original Estradiol base was Methyl Cellulose, which is basically water, which is why he usually prescribes it because it tends to be less irritating, but I needed something more.

Anxiety Meds:
I plan to talk to my psych about changing from Clonazepam to something else because I'm just too tired.  Dr. G said that meds like Prozac and the like do have a libido side effects, but that it would be okay to try them for now if I need to get my anxiety down.  He also wants to consider a Diazapam suppository, which is basically Valium to help relax my pelvic floor.  But we're waiting on that as well.  Not too much at once.  He said anal suppository and I was like, "what what?!  You want me to put it in my butt?"  I do not want to put things in my butt.  But he said that he usually says to put it in the vagina, but since mine is so sensitive he worries that there will be a negative reaction.  So, I might have to put a suppository up my butt.  I'll do it, but I won't like it.  However, if it helps, I'll like the result.

Well, I think that's all.  We really did a lot yesterday and my brain was so fried I couldn't write this entry last night.  So I'm writing it now at work instead of doing work :).  Please ask any questions.  It's a lot of information.

25 comments:

P said...

I love the Valium suppositories. I use them both vaginally and rectally. It doesn't affect me systemically, which is great. Whenever I use one, I just feel my whole pelvic floor relaxing.

P said...

A couple of questions: Are you only noticing your urethral/12 o clock pain during PT? Or at other times? Exactly when does your vagina burn? After it's touched? When you sit? Exercise? Etc.

the girl with pain "down there" said...

Yes I have urethral/12 oclock pain during PT - any time something is pushing on it or rubbing it. My vagina's been burning most of the time lately, especially if I sit for too long or if I'm dehydrated, but I thought I had gotten past that. I don't know what changed.

Dr. G said he was thinking about the valium suppositories, but maybe I should just ask for them since you have given them such a good review! I'm supposed to call him this week to talk about the results of my tests.

By the way, why did you change your name to "P"?

Sloan said...

You know, my doctor has said "I don't know" quite a few times to me (and she is very experienced treating V problems). I actually appreciated it, too, in the same way you did. But at the same time, it makes me feel like a medical freak.
It's great that your vestibule has healed!!

the girl with pain "down there" said...

Well hopefully it's healed. There's still the burning issue, but it is much better. It really is a relief to hear a doctor say "I don't know". It makes them more human and more trustworthy - nobody knows everything.

P said...

Yes, you'd much rather your doctor admit to not knowing as opposed to making up an answer!

I switched to just "P" for online consistency. My screen name begins with a P but is not Pearl on a couple of other pelvic pain sites, so I wanted to streamline my internet identity. A single initial seemed to work best.

Of course, those who have emailed regularly me know my true name, location, etc. :) Someday I might use my real name. Who knows. I just am not ready for my parents and some friends to find me.

the girl with pain "down there" said...

Yeah I get that. I really don't want my parents or friends to find this blog. I just want to remain anonymous. The only people who know me and know about the blog are my husband and my therapist! It's not that my parents and close friends don't know about my vagina problems, but I don't want to have to censor myself on this blog, or hold back from saying something because I know certain people are reading.

Claire said...

Thanks for this thorough summary of your visit with Dr. G! I think our cases sound pretty similar. My pain now is urethral/bladder irritation after intercourse--not in the vestibule at 5 and 7 which had previously made sex impossible. Now sex is pain-free, but I have urethral burning after. And all UTI cultures come back negative.

I had less success with the Valium suppositories, but mainly because I could barely stay awake when I was on them. They made me so so drowsy. But everyone reacts to meds differently!

Good luck, and keep us posted! Claire

Jill said...

Hi there! I can't even believe I found this blog! I have had what I think are chronic infections for years now but my doctors clearly don't know what's wrong or how to fix it. And, the pain you describe sounds exactly like what I'm dealing with. They've said that it might be bacterial infections but then they don't see anything under the microscope. So frustrating!!

I'm now getting fertility treatment and I'm really worried that the infections (if they're infections) are making it impossible for me to get pregnant and may make the fertility treatment useless.

I'm just wondering, did Dr. Goldstein ever tell you that your condition could compromise your fertility? I can suffer through the pain (although that sucks, of course) but my #1 concern is that ignoring the issue might be the reason why I haven't been able to get pregnant for the past year.

Any insight you can offer would be greatly appreciated!!

the girl with pain "down there" said...

Goldstein hasn't specifically mentioned fertility; we haven't really discussed it. But my hormones are way low and I imagine that that would affect my fertility if I were trying to get pregnant. I guess that's the best answer I can give you. Let me know if you find out more. I know for me the hormone thing can be fixed (slowly), so hopefully I won't have fertility issues, but I guess we'll cross that bridge when we get to it. I know that must be so stressful - we haven't tried for babies yet, but I do have that fear in the back of my mind that I won't be able to conceive for some reason. I hope you find a solution soon.

Husband said...

Jill, I don't know the full story of your case but I can share a bit more of our story. My wife has been dealing with this pain issue for about 10 years now. Seen every doctor under the sun, and honestly until Dr G. we had not had any real success. With that said, we do now have two wonderful daughters. Both of which were years before Dr. G.

Now the getting there wasn’t as easy as we would have liked. Conception with my wife having this condition was not an easy task. Extreme pain and very clinical, not exactly how we had imagined it precondition. Both conceptions required fertility treatments, but they did eventually work, even though they took a rather long time and cost a lot, about a year for our first and I think it was about six months for our second. After seeing Dr G I’m pretty sure this would have gone a lot better if we would have seen him years ago and who knows fertility treatments may not have even been necessary.

My advice to you is if you even remotely think you have the condition that is described on this site go and see Dr G. My wife just had her 4 month checkup yesterday (4 months after the first visit to Dr G.) Areas that scored 8-10 on the pain scale at our first visit were now in the 4 range. This is the first time in 10 years we have seen any type of improvement like this. We still have some time before her hormones will fully balance out and she will be “cured”, but we have actually had a couple of times of sex that she found enjoyable. So now it is continue with the cream and start physical therapy for the next 2-3 months….

the girl with pain "down there" said...

Wow, Husband! It sounds like you and your wife are making great progress. I'm so happy for you and I hope that she continues to heal.

Jill said...

Thanks so much for your responses! I really appreciate it and I hope this didn't come off like I was hijacking your blog.

The whole time I've been getting fertility treatment, I keep asking my reproductive endo if he thinks the issues with what I've always thought are chronic infections would affect my fertility. I keep being told that it won't be a problem but I can't help but feel like there must be a link between the infections/pain and my infertility. I'm going to make an appointment with Dr. Goldstein and see if he has any answers for me. Can't hurt, right? (no pun intended!) :)

Best of luck to you all! I'll check back in to see how things are going over here and to let you know if I have any news.

Take care!

the girl with pain "down there" said...

We're all here to ask questions and answer questions. You can "hijack" my blog any time. :)

Anonymous said...

Do you know if Dr. Goldstein does phone consultations? I am thinking of seeing him, but would like to know what more he can do for me than the multiple specialists I have already seen.

Do you feel like your pain has overall lessened with the hormone treatments? I can't get any of the specialists I am seeing to believe that their might be a hormonal component to my vulvodynia...

the girl with pain "down there" said...

Dr. Goldstein does do phone consultations, however I don't know if he will do them before actually seeing you as a patient. But I've spoken to him on the phone several times since becoming his patient. He's hard to get a hold of, but he will call you back.

He's a strong believer in the hormone thing so you might want to go see him. He tests the hormones in a different way (the way NOT based on men, if you read my earlier post about how most doctors test hormones) so he will get you answers in that department.

Husband said...

We never tried the phone consultations prior to being a patient. All I can say in response to your comment about specialists is, my wife went to specialist after specialist in several different states (some world renowned for their specialty) for the last 10 years and her condition continued to get worse year after year. She was put on different meds, botox shots in areas that make me cringe, various different birth controls (pills, rings, IUD's), steroid injections in her back, butt, pelvic region. Told it was all in her head, her tissue was healthy, yada yada yada, etc...

Nothing recommended by the other specialists had any measurable or significant change in her condition. So 10 years and more specialists than I can count in many different fields.

Now after having been a patient of Dr. G for 4 months her pain is down from 8-10 level to the 4 range and her libido is coming back.

So while I admit that having to travel to New York, DC, or Maryland is a pain in the ass, and the fact that Dr. G doesn't take insurance is not fun. When I compare it to the time lost with other doctors, money spent (we filed over $25,000 of insurance claims last year alone for treatments that gave no benefit and in many cases caused a lot of pain.) And the emotional damage of having to deal with this issue for this amount of time. I have to say the time and money spent with Dr. G is by far one of the best things we have spent money on.

Note the first appointment really sucks, see "The girl with pain down there"'s post on what happens there. My wife is one of the most pain tolerant people I know and she about flew off the exam table many times. But again 4 months and she has gone from a pain of 8-10 (10 being worst pain ever) to 4's. No surgery, just hormone cream and removed her IUD. Not to mention this year we are not even going to reach our deductible on her insurance.

So while we are not pain free yet, we are having sex again that she is enjoying and pain is way down. My only regret is that we had seen Dr G on 20-20 or whatever show that was he was on, I wish we had went to see him right then, but we waited and gave the doc we were seeing then time to finish out his treatments.

So I can't say that the docs you are seeing won't be able to figure it out, or that Dr G will be your magic cure, but in our case it was worth it, at least so far, we still have to get the 4 down to a 1, but we are well on our way.

the girl with pain "down there" said...

Well said, Husband. A pain in the ass and expensive, but worth it.

Jaene said...

Husband,

Did your wife have a regular IUD? or was it one that released hormones?

Husband said...

Jaene,

She was on this one Mirena "(levonorgestrel-releasing intrauterine system) is an intrauterine contraceptive that delivers small amounts of hormone directly to the uterus" So yes it released hormones. She was on it for about a year and a half. After the birth of our second child.

Also a question for you out there that are going through the no hormone birth control, after you went off and started with the estradoil gel, did your cycles go crazy, for example my wife now has a period every two weeks, and it lasts for two weeks... Just wondering if this is something you are all seeing or if it is something unique to her. Dr G said he wasn't going to do anything to mess with it until he has her pain free for a while, "one thing at a time."

the girl with pain "down there" said...

My period has gone crazy but sort of in the opposite way of your wife. Mine comes like every 6 weeks or so, but I never really know when it's coming. It has always been so regular before, but Dr. G said that was normal with the Estradiol gel.

Jaene said...

Husband,

I too had a Mirena. I had one put in after having my second child. I am almost convinced that it is the Mirena that was the start of all of my problems!!

Anonymous said...

Ah! I want to respond to the comment by 'husband!' I too was having periods every two weeks for a while after going off the pill! For a few months! I think it's finally stopping now though, so wait it out a little longer and see if it works itself out

Anonymous said...

Hello Everyone, I cannot believe I found this blog, after researching Dr. Goldstein in Washington, DC. First, let me say, "I cannot believe I came across all of this wonderful information." I was given Dr. G's name, after going a major round of doctor's, or shall I say, specialists; each with their limited ability to know or do squat, and in-between finding I had a unusual strain of BV, systemic yeast/fungal infection, thrush, prolapses, and known urinary incontince. This type of merry-go-round, gets started when doctor's are unable or unwilling to see the whole person while applying medical care! I was referred to John's Hopkins; the big guns, when the Uro/Gyn felt the infections were going on too long, and my stage of prolapse and lack of further UTI's were necessary for infectious disease. Okie Dokie. So, on I went, only to find a young, deer in the head lights doctor, who didn't know why I was sent to her type of speciality. It was incredible! After we discussed returning to see a Gyno doc, I ask her for referrals, seeing she works in such a large institution. I was dumped by a voice mail requesting I go to another state; Jack Sobel, M.D. I had been through so much, and some of medical issues not related to this current 5+ months of hell, I was not going to take it lightly. So, I wrote a complaint, and in the meantime, contacted Dr. Sobel, and pondered this issue with him. Of course, I never heard back from Hopkins, or their doctor's, admin, etc; go figure. Dr. Sobel, finally emailed me with Dr. Goldstein's name, as I am not going to travel out of my area, when there are some of the largest institutions where I live; ridiculous, and part of my overall complaint.

Into my 6mos of vaginal pain, rectal pain, which started after the former. Started pelvic pt, which I think has merit. Saw my Gastro doc, and had a colonscopy too; yeah, it goes like this! He missed internal and external hemmorhoids??? Back to primary in a no nonsense mood. The fifteen minute gatekeeper up in arms; "I don't know what to do?" On to a colon/rectal surgeon. He dx the hemmorhoid condition, and shortly thereafter, I had banding, and the thrombosed one taken off. Not being able to take narcotics, and dealing with the excruciating pain of this in-office procedure over a week ago, has been more than I can take now! Nothing is helping! Vaginal pain still there, and burning when I urinate! Pressure in the whole vulva/vaginal/rectal region; can't sit, can't lie down, walking even bothers me!!!!!

Where does one go when they have reached their limit? I question hormones, thyroid, prolapse, and maybe what the infections did as a cause to these symptoms. This issue with practitioners not taking insurance is becoming wide spread, and putting patients in serious predicatment's! I especially go bonkers when I hear a physician is in this belief that they are some 'God,' rendering us unable to have a voice! And, worse, where are the everyday GYNS, UROLOGISTS, etc? This cause and effect with medical care has cost me more money, and serious anquish then the conditions alone.

Looking for help; a call to relief.

the girl with pain "down there" said...

Wow, it sounds like you are at the end of your rope. So I'm unclear about Dr. Goldstein. Have you seen him or is he too far from where you live and you've decided not to see him? He also has offices in NY and Annapolis, MD. I've hard that Dr. Kellogg-Spadt is very good and she does take insurance - she's in Philadelphia. I've also heard of Dr. Irwin Goldstein, located in San Diego, but I'm not aware whether he takes insurance or not.

It seems that what we all have in commone, besides the obvious vagial issues, is the never-ending stories about incompetent and uncaring doctors. It's frustrating and devastating and unfair. I know how you feel. I was bounced around so many times to so many doctors who didn't know what the hell they were talking about. One doctor told me to take 4 Advil before I have sex - that was her advice. Well, thanks for nothing.

I really hope that you are able to find a doctor close by who can help you - I know it's so frustrating.