I can't live the rest of my life like this

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I can't live the rest of my life like this

Postby passenger » Tue Jun 27, 2017 3:51 am

About me? Well let's see. I'm an 18-year-old female college student with a history of mental illness. The past two years of my life have been pretty shitty, but it seems as tough, as of this past May, I was finally beginning to get my life on track. I was going to a residential program for my eating disorder. I was making friends. I was beginning to discover what it's like to feel secure within myself; and to feel like a living, breathing, complete person again. Until this happened.

At my residency program, they prescribed Zoloft for me, after I had tapered off my meds and been clean for about 2 weeks prior. I was a bit hesitant to start a new med, but I figured - why not? It's not like I'd had any particularly bad experiences with SSRIs before. Zoloft is supposed to be safe, right? Everyone takes it.

Well about two weeks into the med (7 days 50mg, 7 days 100mg), I developed a sudden burning sensation in my genital area. As if my leg was waking up from having been asleep for hours; that uncomfortable, foreign feeling, that you just wanna shake off as soon as possible. Except, well, in my genitals. And permanent. Being the hypochondriac that I am, I immediately thought I had PGAD, which I had heard about from some low-brow sensationalist television program that I probably watched at 3 in the morning some months ago.

So I went to my doctor and told her about my symptoms. I got a urine test, and it turns out I had a UTI. I was relieved, to say the least. I assumed with a sigh of relief that this would all go away once the Bactrim cleared my infection up. But unfortunately, as I'm sure you already guessed, the pain did not go away after my infection cleared up. Further testing showed that I no longer had a UTI, or a yeast infection (never had one in the first place). Yet the pain was still there.

At this point, I'd been experiencing the pelvic burning sensation (seemingly indicative of pudendal neuralgia, based on what I've read thus far) for about 10 days. I discharged from residency, and went to my primary care doctor. She prescribed me Hydroxyzine. It mostly just made me sleepy, but at least I wasn't an anxious, crying, pacing mess anymore.

Suddenly, about 4 days later (14 days or so since my initial symptoms began), the symptoms went away. For 5 days, I was relatively pain free. However, it was only temporary respite from the bodily torture. My symptoms have since returned, and it's been about 9 days since I last felt any relief.

I can't believe that this has happened to me. I didn't do anything wrong. My life was even starting to improve for the first time in forever. And now I'm back to square one, wanting to die again. I hate being constantly uncomfortable. I'm afraid that I won't be able to go to college, to concentrate on school work, on piano, on art, on anything that I used to do and love. I feel like I've been stripped of all that I was once holding onto. If the pain doesn't go away in a year, I'll probably kill myself.

If anyone reading this has been in a similar situation, and had their symptoms go away, please let me know. This seems too random to possibly go on forever.
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Re: I can't live the rest of my life like this

Postby Violet M » Tue Jun 27, 2017 6:49 am

Hi Passenger,

I can definitely relate having been in a place where I thought I was going to have to live with an uncomfortable feeling the rest of my life but with the right treatments, I am doing great now. You could check with your doctor about getting a referral to a physical therapist who treats people with pudendal neuralgia but be careful about doing exercises and stretches that might irritate things further. I think at this point you would want an evaluation to see if your pelvic floor is tense or overly contracted and if so, maybe some internal myofascial release would help. Did you see the list of PT's on the website at pudendalhope.org?

Also, it might be helpful to use some topical ointments/creams like extra strength vagisil or the equate walmart brand with 20% benzocaine. There are compounded creams you can use too -- with gabapentin, ketamine, or lidocaine.

Keep your courage up. Most likely you will be fine with the right treatments so don't let this get you down too much.

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: I can't live the rest of my life like this

Postby passenger » Thu Aug 03, 2017 12:39 am

Violet M wrote:Hi Passenger,

I can definitely relate having been in a place where I thought I was going to have to live with an uncomfortable feeling the rest of my life but with the right treatments, I am doing great now. You could check with your doctor about getting a referral to a physical therapist who treats people with pudendal neuralgia but be careful about doing exercises and stretches that might irritate things further. I think at this point you would want an evaluation to see if your pelvic floor is tense or overly contracted and if so, maybe some internal myofascial release would help. Did you see the list of PT's on the website at pudendalhope.org?

Also, it might be helpful to use some topical ointments/creams like extra strength vagisil or the equate walmart brand with 20% benzocaine. There are compounded creams you can use too -- with gabapentin, ketamine, or lidocaine.

Keep your courage up. Most likely you will be fine with the right treatments so don't let this get you down too much.

Violet


Hi, Violet. Just an update here. So I went to see a woman's health specialist in my area (not someone specific recommended on here, but I read good things about her from reviews), and she recommended physical therapy based on my symptoms, though she didn't actually evaluate my pelvic floor herself.

Based on the doctor's recommendation, I went to see a physical therapist in my area, who knows about pudendal neuralgia, and performs pelvic floor therapy, including internal myofascial release. I've been going to this therapist for a little under a month now (4 appointments). I have a 5th appointment tomorrow.

So far it hasn't helped, but I'm going to continue on with it regardless, as I am desperate, and aware that due to the nature of physical therapy, I shouldn't expect instantaneous results.

However, the pain has gotten to be so excruciating that I need some relief no matter what. I'm even willing to jump into surgery, no matter the consequences. I just want a diagnosis already.

Therefore, I'm going to see my primary care physician this Friday, in hope that she'll prescribe me a medication that might help (what would you recommend starting with?), and refer me to the pelvic floor branch of the Mayo Clinic (Minnesota), or the MAPS Medical Pain Clinic in Edina. I know Dr. Stanley Antolak is probably the top Dr. in my area that actually knows about and treats PN, but I haven't gotten any info yet on if he's retired or not. I know he came out of retirement at one point to treat patients. But I've heard conflicting reports as to whether he's still taking patients as of August 2017. Do you know of any other doctors in Minnesota that could treat my pain, and would be knowledgeable regarding Pudendal Neuralgia / PGAD, as well as caught up on all the recent research?

Anyway, that's how things are going for me at the moment. It's been two months now, and it's funny to me that the level of pain that I'm experiencing every day would require prompt and intensive treatment, if only the cause were visible, like a broken arm. I feel like I've been cursed. I spent my 19th birthday alone in my room just trying to distract myself with superficial TV shows and video games. I miss the days when I could accomplish more than that. I used to be considered a person with tons of potential. If only those people could see me now. They'd just pity me.

[[Oh yeah, forgot to mention it, but I tried 4% lidocaine cream (Walgreens generic brand). It does help with the PGAD and burning to a degree, but it doesn't do much about the urinary frequency. Additionally, though it seems like it makes my pain better at first, it seems like the pain is worse after the cream wears off. I'm a bit concerned about it doing harm in the long run. It's nice to have as an accessible, somewhat effective backup when I feel like I want to die, but it's not a sustainable long term solution.]]
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Re: I can't live the rest of my life like this

Postby Violet M » Sat Aug 05, 2017 6:13 am

Hi Passenger,

Sorry, I didn't see your post until after you appointment today. Sometimes tricyclic anti-depressants help urinary frequency symptoms. I have not heard of them being associated with causing PGAD like the SSRI's are. I agree with you that medications are temporary solutions and not a fix for the real problem but sometimes they can help you stay sane while you are searching for the right permanent treatment. My guess is the MAPS clinic does some procedures such as nerve blocks.

Last I heard, Dr. Antolak had retired and I doubt he has come out of retirement a second time. After he retired he told me his son was treating people with pudendal neuralgia but that was several years ago so don't know if he still is. You could ask. http://wellness.allinahealth.org/providers/18153

So, does PT help temporarily or cause a temporary flare-up? Do you have tenderness along the course of the pudendal nerve when the PT presses on it?

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: I can't live the rest of my life like this

Postby passenger » Sat Aug 05, 2017 7:22 pm

Violet M wrote:Hi Passenger,

Sorry, I didn't see your post until after you appointment today. Sometimes tricyclic anti-depressants help urinary frequency symptoms. I have not heard of them being associated with causing PGAD like the SSRI's are. I agree with you that medications are temporary solutions and not a fix for the real problem but sometimes they can help you stay sane while you are searching for the right permanent treatment. My guess is the MAPS clinic does some procedures such as nerve blocks.

Last I heard, Dr. Antolak had retired and I doubt he has come out of retirement a second time. After he retired he told me his son was treating people with pudendal neuralgia but that was several years ago so don't know if he still is. You could ask. http://wellness.allinahealth.org/providers/18153

So, does PT help temporarily or cause a temporary flare-up? Do you have tenderness along the course of the pudendal nerve when the PT presses on it?

Violet


It doesn't really seem to help or cause a flare-up, in all honesty. My PT never specialized if there is tenderness along the course of the nerve, though some of my pelvic floor muscles are a bit tight, so she's been working on loosening those up. However, she wasn't able to find any "trigger points", i.e. areas that refer pain throughout the nerve. It's mostly been local, muscular pain.
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Re: I can't live the rest of my life like this

Postby Violet M » Sun Aug 06, 2017 3:48 am

Well, if it's not making you worse it might be worth a few more sessions since your pelvic floor is tight. I would ask her to press at the ischial spine and along the Alcock's canal to see if there is tenderness there. Dr. Bautrant uses that as a diagnostic method and it is also described in the Nantes criteria for diagnosis of nerve entrapment.

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: I can't live the rest of my life like this

Postby passenger » Mon Aug 07, 2017 2:08 am

Violet M wrote:Well, if it's not making you worse it might be worth a few more sessions since your pelvic floor is tight. I would ask her to press at the ischial spine and along the Alcock's canal to see if there is tenderness there. Dr. Bautrant uses that as a diagnostic method and it is also described in the Nantes criteria for diagnosis of nerve entrapment.

Violet


Thanks for the advice. I'll remember that.
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Re: I can't live the rest of my life like this

Postby billyjoe » Wed Aug 23, 2017 11:22 am

Not only you, nobody will wants to lead this link of life ever. Sorry to hear about that.
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Re: I can't live the rest of my life like this

Postby cathyatlantic » Thu Aug 31, 2017 3:19 pm

Hi Passenger,

Is your PGAD geting better ? Mine is getting worse, I suffer from a painful bladder and constant arousal. I have PGAD since I withdrew from Sertraline while being on it for only 2 weeks. I brought my dose down from 50mg to 25mg because I had a lot of side effect (tinnitus) then I developped vaginal lubrification, painful bladder, hyperactive bladder, then engorgement, arousal, spontaneous O. My doctor thought I had a UTI so I got antibiotics but it didn"t stop the flare up. I had several urine analysis done, they came back clear. I was sent to a urologist, got a cystoscopy done and he doesn't think I have interstitial cystitis but agree that I might have PGAD.

My psychiatrist made me tapper Sertraline very fast and put me on Risperidone (which made me totally depressed and weird and totally disconected) and Anafranil (which made the tinnitus I developped from the Sertraline withdrawal worse.) then on Xanax and zopiclone (they don't help with the PGAD). I still have a painfull bladder and a constant arousal (constant engorgement, constant lubrification). I don't know what to do. My urologist wants to put me on lyrica but I read so many horror stories about it that I am scared to take it.

How are you doing ? Is your PGAD improving ?

Take good care

Cathy
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