Is this PGAD/PNE PLEASE HELP ME

Many physical activites such as sports, pelvic surgery, etc can all contribute to PN

Is this PGAD/PNE PLEASE HELP ME

Postby Hopeitworks » Wed Sep 06, 2017 4:36 pm

These are my symptoms:
• Sitting becomes intolerable.
• The pain is often not immediate but delayed and continuous and stays long after discontinuing activity that caused the pain.
• Often the pain is lower in the morning upon awakening and increases throughout the day.
• Pain after orgasm.
• Strange feeling of uncomfortable arousal without sexual desire. Mostly just a tingling feeling and I can control not having an organism.
• Urethral burning (intermediate)
• Feeling like the bladder is never empty or feeling the need to urinate even when the bladder is empty.
• Urinary frequency.
• Pain during and after intercourse.
• Minor low back
• The symptoms are bilateral.
• The front of my things burn
• Sharp electric type pain in the groin area when sitting.

Is this PGAD? I have never been more afraid than I am right now. Because from what I have read there is no cure and treatment don't work or can make this condition worse. If I had to I could live with the leg pain, but not the tingling in my clitoris.
Last edited by Hopeitworks on Wed Oct 11, 2017 3:53 am, edited 1 time in total.
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Re: Is this PGAD/PNE PLEASE HELP ME

Postby Hopeitworks » Tue Oct 03, 2017 12:36 am

I am ready to pull my hair out because of PGAD symptoms. I feel so violated and confused because I don't know what caused this to happen to me. I worry that I will never know, and if I never know how can it be treated?

This forum has really been my saving grace! So thank you!

Since my doctor thinks I may have IC along with PGAD and PN I am going to see a Urologist, for a 2nd opinion. I have emailed both my Endo and Dr. Marvel asking what their thoughts are on the medication Spironolactone being the cause of PGAD and PN. I am afraid to stop taking Spriro because when I stopped taking it I got my first PGAD symptoms 16 days after stopping Spiro. Spironolactone decreases testosterone and DHEA levels.

I can't think straight I am so sorry this post is written poorly. I get my MRN this weekend and that has me nervous!
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Look what I found on Ask a Patient.com

Postby Hopeitworks » Tue Oct 03, 2017 2:11 am

This women claims Spiro caused her PGAD. Read the attachment. I told Dr. Marvel I thought Spiro could be the cause and he didn't even consider it being possible.

I'm not saying I know for sure Spiro caused my PGAD, but it's odd that I found this comment.

I'm blown away that I found this. What do you all think?

Hormones are a tricky thing, that much I know!
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Re: Is this PGAD/PNE PLEASE HELP ME

Postby Violet M » Wed Oct 04, 2017 5:26 am

Hi Hope,

One of the side effects of Spiro is decreased libido which makes sense if it decreases your testosterone. http://reference.medscape.com/drug/caro ... e-342407#4

Since you were on Spiro when the symptoms started, getting PGAD would be the opposite of what would be expected from taking this drug. The fact that it decreased your symptoms of PGAD when you went back on the Spiro sort of leads you to the conclusion that it wouldn't be the Spiro that caused the PGAD. Also, you have some other symptoms besides PGAD don't you? Pain symptoms? Which suggests it is more than just a hormonal problem, but I could be wrong.

Even, if Spiro is one of the causes it is possible it is just one of several things that triggered your symptoms of PN and PGAD. Often there is more than just one thing going on with patients like us.

Good luck as you sort through this. It's great that you are considering every angle.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Re: Is this PGAD/PNE PLEASE HELP ME

Postby Hopeitworks » Thu Oct 05, 2017 3:34 am

Hi Violet,
I stopped spiro before my PGAD symptoms started. I stopped Spiro on July 4th, first PGAD symptoms started around July 20. At first I thought my libido must of spiked, because it was use to being low. So I started taking it again and my pgad became less intense. It's still bad, but not as bad as the first 3 days until spiro kicked back in.

But I also see your point about spiro not causes my thigh and back pain.

But I'm just trying to figure this out. I get my MRI this wekend maybe that will show something.

I see a Urologist on the 10th to rule out IC. I really don't think I have IC. But it's something to check off!

Staying sane through all of this is really hard. But I've got a great friend that understands and helps me. I thank God for her. She knows who she is....

Thanks for always responding Violet! It's great to be able to count on you.

Hope
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Re: Is this PGAD/PNE PLEASE HELP ME

Postby Violet M » Fri Oct 06, 2017 5:41 am

OK, sorry I read your post wrong. So, maybe it's possible the Spiro was masking the underlying symptoms and when you went off of it the symptoms became more prominent. I don't know....just brainstorming here. I'm not sure if Spiro can damage nerves. I would have to do more research on that.

I guess another question to ask is whether your hormone levels were checked when you were on and off the Spiro and was your testosterone level abnormally high when you were off the Spiro. But still, would that account for all of these neuralgia-type symptoms that you listed such as burning pain?

• Sitting becomes intolerable.
• The pain is often not immediate but delayed and continuous and stays long after discontinuing activity that caused the pain.
• Often the pain is lower in the morning upon awakening and increases throughout the day.
• Pain after orgasm.
• Strange feeling of uncomfortable arousal without sexual desire. Mostly just a tingling feeling and I can control not having an organism.
• Urethral burning (intermediate)
• Feeling like the bladder is never empty or feeling the need to urinate even when the bladder is empty.
• Urinary frequency.
• Pain during and after intercourse.
• Minor low back
• The symptoms are bilateral.
• The front of my things burn
• Sharp electric type pain in the groin area when sitting.

Sorry for being so analytical. It's just my personality. :oops: :oops: But I think you have to be like a Sherlock Holmes to figure out the puzzle of PGAD and pelvic pain sometimes.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Re: Is this PGAD/PNE PLEASE HELP ME

Postby Hopeitworks » Sat Oct 07, 2017 1:22 am

Hi Violet,
YES- Please keep brainstorming! 8 years ago I had my testosterone and DHEA levels tested and they were through the roof, and I had the symptoms. After those results I was put on Spiro. I didnt get my hormone levels tested again until July 2017. That's when my testosterone and DHEA came back really low. My testosterone was a 3. So I stopped Spiro as I stated before. I had my levels tested again in Sept, and I was back on Spiro and my testosterone level was 7 and DEAH level was normal. So it went up from being off the medication. So I wonder if my body is use to functioning at a 3 and I need more time for it to come down. I don't know... I have been back on Spiro since July 20th so I would think it would have kicked in my now. So if Spiro was masking it why hasn't it gone away.

I don't know if Spiro could have caused the neauralgia type symptoms, if I had to bet I would say no. So that's what makes this a puzzle. No need to apologize for being analytical! I have the same personality. The good news is I am going to tomorrow to get an MRI so maybe that will result in a puzzle piece. I will be sure to update you once I get the results.

Thank you again Violet for not giving up on me! You are amazing to help all of us! I admire you and maybe someday if I am better and have gained the knowledge I can help others, like you have.

This morning the PGAD symptoms were really bad and I was ready to lose it! But a very good friend called and she made me smile. My friend is asking a friend of hers who happens be a pharmacist to research Spiro. This is the nicest thing anyone has done for me. Other people would probably take it for granted, but not me! I will never forget she went out of her way to help me. Just when I thought there weren't anymore good people left in the world everyone on this site to include my amazing friend has shocked me in a good way!

Have a good weekend!
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Re: Is this PGAD/PNE PLEASE HELP ME

Postby Violet M » Sat Oct 07, 2017 4:38 am

Sometimes when you go off of a medication and then go back on it again you don't get the same results as before. But I don't know if that's what is happening to you. Also, if it is pudendal neuralgia, the symptoms can slowly progress and get worse over time which could be another reason the medication no longer has as great of an effect. At least that's what happened to me. At first the symptoms were mild but they got worse over time.

Good luck with the MRI. I hope you will get some valuable information from it but if not, don't let that discourage you too much because MRI's don't always give a conclusive diagnosis. They are important for ruling out certain things so it's important to have them but they don't always positively pinpoint a particular diagnosis. I will be interested to hear how it turns out for you. You still have lots of options left so hang in there. You will get through this and I believe you will eventually find the right answer for you.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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