Diary of a PSAS patient

March 14, 2002•Morning bicycle ride (stationary bike in basement) for 30 minutes caused numbness from hips down in both legs followed by sharp “orgasmic” feeling. I also felt like I had to urinate all the time and only dribbled when I went very often. I took a shower (hoping for relief) then went to work. The sensation continued all day. I went to my family doctor at 3:00 pm. He checked my urine to see if it was UTI, also took some blood work. He did not know what it was or how it was caused, except that it may be a type of seizure. He suggested I call my neurologist (for an EEG), a urologist and a gynecologist.

March 23, 2002•EEG this morning, still feeling the sensation quite often during the day including during the EEG procedure.

March 28, 2002•Talked to the neurologist re: EEG. He said that it was normal but since the symptoms were persisting, he put me back on dilantin 300 mg/day.

March 30, 2002•Started my menstrual period and the sensation was intensified with use of tampon, so I used pad only. (This did not decrease the sensation at all.)

April 11, 2002•Gynecologist did physical exam, found nothing wrong, although the sensation was still present and was even exacerbated by the exam. He prescribed an anti-spasmatic medication to relieve the bladder symptoms. Said to contact a urologist. (After taking the medication for 7 days, I no longer felt the constant urination feeling. “Orgasmic” sensation still felt, especially in the car.)

April 19, 2002•Doctor’s appointment with my neurologist who explained that the EEG was normal, and reduced dilantin from 300 mg/day to 200mg/day for 10 days then 100 mg/day for 10 days then no more dilantin. I asked about the possibility of my herniated disc being cause of problem. MRI was ordered for April 30, 2002.

May 9, 2002•The urologist did an examination and took some blood work. He was sympathetic with my situation and referrred me to the Center for Sexual Medicine.

May 15, 2002•The urologist called to recommend my taking Sudofed tablets (the regular ones, not the drowse-free) every 6-8 hours to see if the symptoms would decrease. This did not seem to work after trying for 2+ weeks.

June 4, 2002•Today I took my last Zoloft pill. Sensations seem to be reducing somewhat. If I drive to work, the vibration of the car ride is unbearable. But, with no further vibrations, 45 mins. to an hour later, little or no sensation (until I get in the car again).

June 30, 2002•Sensations getting less frequent. During sexual intercourse, the sensation is not so bad except that I cannot stop it and the rest of the night is not so good – I cannot sleep through the intense sensation. I found that if I go to the bathroom after intercourse and allow the fluids to drain out of the vagina and then wash, the sensation is reduced enough for me to sleep through it. The next morning, the sensation has reduced considerably.

July 22, 2002•Doctor’s appointment with Dr. Munarriz. Sensation was exacerbated by ultrasound, masterbation and examination. Dr. Munarriz prescribed 5% licocaine for topical use on the tissues, but it burned intolerably. Lidocaine gel also burned as did Emla. Nothing seems to work to reduce the sensation after it has been stimulated. Driving is the worst kind of vibration which can cause the sensation to be inhanced.

July 29, 2002•I had been feeling very many “orgasms” today so when I got home from work, I tried the Emla. Intially, it burned like hell, but within 5 minutes I was numb. But that only lasted about a 1/2 hour before I felt like I was burning up. (I even showered with cold water to relieve the burning, but felt so sore 1 1/2 hours after the application. I decided not to put anything there for a few days.)

August 6, 2002•I did some pretty vigorous exercise today (ran for the train) and got that initial “numbness of hips and legs” followed by a very strong continuous orgasm. (I really hadn’t felt this intensity in quite a while.) I tried to apply the 5% lidocaine but it just made things worse (burning and continued orgasm). I then washed myself and applied the Emla. As it did before, it burned going on and then numbed. About 1 1/2 hours after application, it seemed to be still working. I felt no orgasms and no real numbness.

August 9, 2002•I am trying to get back to an exercise program. I walked last night, though not too strenuously. I walked a good 3 miles strenuously this morning and feel some sensation, but it’s not that bad.

August 15, 2002•The general sensation comes and goes without apparant cause. Sometimes the car ride (or a train ride) will bring it on and sometimes it does not. This is more frustrating because I do not know when I will feel it and it comes sometimes in the most inopportune moments.

September 9, 2002•I received the 40% neo-ointment late last week. When I first tried it, there was no response at all (i.e., no burning, no irritation, no numbing, no help). On Sat. (9/7/02), I woke up early with very intense orgasms. I tried the 40% ointment and it burned slightly but did nothing else. I eventually placed a pack of ice on the area and still got no relief. It may be important to note that I was on my menstral period at that time. By mid morning, this intense feeling went away. All day, I was in that state of “almost orgasm” and was able to sleep that night.

August 2, 2003•My symptoms do not seem to get much worse but they do cause embarrassment at work and at home and have cause me to not be able to travel much by car. I am seeing a psychologist to help me mentally handle this situation. On a usual day, I am able to divide my attention from the constant sysmptoms, but there are days when the symptoms are unbearable and I just stay away from everyone and work out my frustration.

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of BU School of Medicine