Newbie-Possible PN vs. hypertonic-Confusion

[4loveofscience&art]

Hello all,

I would like to share my story in attempt to connect with others, relieve some frustration, and gain insight. I am a 31 yo female with no history of pregnancy or pelvic surgery. My symptoms began in late August of this year. I woke up feeling the urge to urinate and the sensation of almost being "pleasured". I assumed it was a "leftover" feeling from masturbating the previous night. It didn't exactly hurt, but just felt like someone was touching me and the urge to urinate was quite bothersome. After dealing with these symptoms for the entire week, I went to a minute clinic and was prescribed antibiotics for a UTI. To this day I will never know if it was a UTI, since the dipstick appeared inconclusive and I have had similar symptoms since sans UTI. In any case, all was resolved within a week and my symptoms returned after a week and a half. My practitioners diagnosed me with a yeast infection and gave me Diflucan. This began my uncomfortable and strange journey of feeling better, feeling worse, feeling in the middle....for a period of weeks. I was crying on the examination table pleading with the Doc for an answer to the urgency, pulsating, pain, heaviness, orgasmic-like feelings I have been experiencing off and on for some time. I was told I had no infection and no further support (medical/emotional) was given. I saw I was getting nowhere fast and decided to see a urogynecologist who quickly diagnosed my with hypertonic pelvic muscles or a tight pelvic floor, for those who are unfamiliar with the term. I was given a muscle relaxer, which hasn't really helped. I then tried valium suppositories, but haven't noticed a significant improvement with those either. The pain seemed to come and go and was exasperated by orgasm. For example, if I had one, I was in pain for about a week after....So I basically stopped that. I started PT after feeling let down by the meds. I only had three appointments and was dropped, by an apparent "misunderstanding" which was complete BS but not worth getting into. Anyway, she thought the pain was more nerve related, but then changed her mind and said it was muscle related before canceling all my future appointments and refusing to return my calls. Complete insult to injury. The last couple weeks I have felt much despair, wondering how I was going to get help when everyone seemed rather frustrated with me. I had a sexual experience about two weeks ago due to feeling "sort of okay" and relatively "in the mood". We did not have penetration, and I did not have any pain during this intimacy except for a pulled groin muscle due to awkward "bedroom gymnastics". haha I don't think I can describe it as anything else. I have now been in semi-constant discomfort that has ranged from spasms, pulsating, stabbing, urge frequency et for the past two weeks. I feel guilty that I even tried to be intimate, and wonder if pulling the muscle somehow pulled the pudental nerve. I called my doctor but he refuses to evaluate me again. He claims it is probably just hypertonic muscles, but hasn't reevaluated me in months. Sigh. I am now waiting again for this PT to call me back. There are only two on my area. I have called other doctors for a second and third opinion, but won't be able to see them until almost Feb. I feel scared by my body and don't know how I am going to feel from one hour to the next. I spend most of the day in discomfort, and sometimes get a "break" here and there. Sitting does not change my symptoms dramatically. I can't pinpoint what does, besides orgasm and stress. Generally, I have some level of discomfort during the day. I don't know anyone who has been though this, and feel quite alone, depressed and scared. I feel kind of silly for having an intimate experience which led to further pain and discomfort. I feel like I should have "known better". I have much shame and guilt regarding this issue, which I am trying to work through. Right now I cannot afford counseling and there are no sliding scale practices around. I do get counseling with school, but now it is break. Thanks for listening to my story. I can relate to all others who struggle and am open to any insights others may have. Thanks again.

[Violet M]

Hi and welcome to the forum. So sorry you are going through this. It's kind of hard for me to read your story because it sounds somewhat similar to what I experienced -- the fear, uncaring doctors, etc. and worst of all the symptoms, including the feeling of needing to urinate frequently and persistent genital arousal disorder. I also thought I had a really bad yeast infection and had very tense pelvic floor muscles. So I kind of understand what you are going through.

Check out our newsletter on PGAD. http://www.pudendalhope.info/sites/defa ... ne2013.pdf

I've known other women with PGAD and just wanted to say you are not alone. I can't say the best course of action for you, especially not knowing all of the details of your case but hopefully you will find some answers here. You might find this thread helpful. http://www.pudendalhope.info/forum/view ... =48&t=1590

Take care,

Violet

[4loveofscience&art]

Thanks for your response Violet,

Having people to share with that have been here or are still here.... is somewhat refreshing. I feel like an alien lately. I am lucky to live close to Dr. Eckenberg (spelling?) and will be seeing him towards the end of next month. I see he was listed in one of the links you sent me. I have so many feelings lately.... it's very difficult to sift through all the emotions. I am trying to accept my condition, whichever that may be, but have been feeling a bit sidelined by the docs I've seen. One doctor simply said, don't have sex or orgasm. As if it were that simple. Sigh. Thanks for your response. I will try to stay strong.

XO

[Violet M]

It's not unusual to be sidelined by doctors when you have this condition. I hope your appointment with Dr. Echenberg goes well. I believe he understands this condition well although I know he uses injections which I would consider an invasive therapy that carries with it a slight risk of causing a worsening of symptoms, based on experiences other patients have reported. So if that's what he recommends I would ask him what the possible side effects are.

Violet

[LindseyD]

Thanks for your response Violet,

Having people to share with that have been here or are still here.... is somewhat refreshing. I feel like an alien lately. I am lucky to live close to Dr. Eckenberg (spelling?) and will be seeing him towards the end of next month. I see he was listed in one of the links you sent me. I have so many feelings lately.... it's very difficult to sift through all the emotions. I am trying to accept my condition, whichever that may be, but have been feeling a bit sidelined by the docs I've seen. One doctor simply said, don't have sex or orgasm. As if it were that simple. Sigh. Thanks for your response. I will try to stay strong.

XO

Hello, I happened to notice you saying you were going to see Dr. Echenberg. I would love to know how your visit goes with him because I had considered traveling to see him myself. Hope he is helpful to you!