I am not a patient of Dr. Brizman but I am desperate for answers. I had a TAH Sept 2011 and I am on HRT. I was only 27 when I needed this, it was due to Cervical Cancer and Endometriosis. I have always had pain with intercourse and with my menstral cycle. So I was hopeful that the hysterectomy would decrease these symptoms. I have never experienced an orgasm with penetration and I read that women who had never experienced one reported that after their hysterectomy they were able to achieve one for the first time and that sex was more satisfying. Not only was the "C" word scaring me, I don't think anyone likes to hear the word cancer but I was just fed up in general. I had a history of abnormal paps for 5 years but they always came back very mild in abnormality. So no treatment was necessary, except to re-pap every 4-6 months. I had 3 children in 45 months (15 months spacing between each of them). I had two normal paps after I had my first two children, and two abnormal ones inbetween since they do a pap when you first find out you are pregnant. So I had a pattern of abnormal, normal, abnormal, normal, abnormal... So when I went to my post-partum visit after my third child was born I was expecting the pattern to continue and that the pap would be normal. However, in less than a year's time it had dramatically jumped in severity. Next course of action was a LEEP which my GYN was hopeful would remedy the problem. However, after the LEEP the margins were clear around the cervix on the edges but not clear in the endocervical canal. So my doctor suggested a hysterectomy would be the best course of action. I prepared myself mentally for months while I was sorting out Insurance so I could have the surgery and last minute at my Pre-Op for the surgery my doctor says he wanted to try a CONE because I was so young and he wanted to see if it would work and if it didn't then we could always do the more invasive surgery later. I broke into tears, As I stated I mentally prepared myself for the surgery and I had to fight to get insurance that I didn't even qualify for! At first I qualified for the BCCTP(Breast and Cervical Cancer Treatment Program a program under Medi-Cal )(I live in Ca.) I only qualified for this on the basis of my diagnosis alone. Only problem was I could not continue to see my GYN (He accepted the insurance but the hospital he is contracted with to perform the surgery did not) So after going to a provider who accepts this, and being told that the LEEP was my treatment, that the next step was to Re-Pap in a year, talking about how my doctor doesn't know anything and basically being spoken down like I was uneducated telling me that I didn't have cervical cancer. I walked out and never saw that provider again! First of all, I wouldn't have qualified for the BCCTP if it weren't for a diagnosis relating to cervical cancer. Second of all, Re-Pap in a YEAR?!?! When my Pap was mildly abnormal the suggested treatment was to re-pap every 4-6 months and now it is worse and they are telling me a YEAR! LUDICROUS!!! So I got on the phone with IEHP head quaters to plead my case, I didn't qualify because my income was too high but I had to try. I was fighting to keep my doctor! Yay! IEHP accepted me and now I was able to go back to my GYN. Anyway, back to the point where I am in tears because I am being told that he wanted to do a CONE instead... at this moment I started VENTING... telling him I fought for you and I don't even know how long I will have this insurance because I don't technically qualify for it so I am afraid if I do a CONE and I am in need of a hysterectomy still that I won't have insurance because they will have cancelled me by that time! I was going off about how I thought the hysterectomy would remedy all of my symtoms i.e. painful intercourse, depression, painful menses, pelvic pain etc.. So he said wait a minute... you may have Endometriosis. This was something I was told I might have(from an E.R. doctor but was never confirmed with surgery) and was told I would not be able to have children. After being told this, my husband and I started trying to conceive worried that we wouldn't be able to have a family and a month later we were pregnant. Three kids later and it is being suggested that I have Endo again( I didn't think it was possible since I was able to conceive). My GYN said this changes things, lets do a Laparoscopy to confirm this diagnosis. After the Laparoscopy he stated that he didn't know how I was even able to have children and said that he needed to take my ovaries as well (initially he was going to leave them) So we proceeded with the proceedure. I didn't really look that much into the oophorectomy, because he stated that it was as simple as rubbing a cream on my arm and not a big deal. Looking back I think that I always had hormonal problems, I wish I had a blood test before the hysterectomy to have something to compare to... Pre-Hysterectomy I would have hot flashes and "older women" would tell me that it wasn't possible. But I would tell them that I did of course they weren't as frequent as they are now:( I didn't realize how much losing my ovaries and having to be on HRT at such a young age would impact my life. But there is nothing much I can do now.

Unfortunately, I still have painful intercourse and have not achieved the big "O" yet, the hysterectomy did not solve many problems like I had hoped. A major plus is not having my monthly cycle anymore because the cramping was too much to bare at times. Only now it's worse, I would give anything to have my cycle returned and to have never agreed to having this surgery. I have been suffering from unexplained pelvic pain. I thought it was associated with the hysterectomy but my doctor says it is not. I have even ended up in the E.R. because it was so bad, I woke up one day not even able to stand up right or walk. I had to crawl to the bathroom to have my morning void and crawl back to bed to rest hoping it would get better which it didn't and ultimately I decided to go to the Emergency Room.The E.R. doctor ran bloodwork, did a CT scan and said that everything came back better than normal. He then suggested that it could be due to left over endometrial tissue that my GYN missed. My GYN sent me to have a pelvic ultrasound which showed nothing. When I suggested to my doctor that it may be left over endometrial tissue and that I may need to have another Laparoascopy to find out, my doctor just laughed. So I started explaining how my pelvis is always tender and I have had about 5 episodes in the past 2 months where I couldn't even walk telling him this is no quality of life, I can't afford to have this happening I have a 3, 2, and 1 year old to care for. I told him that at first I thought it was because of having intercourse the night before but it happened when I hadn't been sexually active for about 3 days so I crossed that off the list. Then I told him that when I would crawl to the bathroom and urinate that it was the longest pee of my life everytime. I was scared that my spinal cord wasn't signally my bladder that it needed to empty (since I was recently diagnosed with slight spinal stenosis as well because I suffer from neck and back pain) So my GYN asked if the symptoms were relieved after I urinated and I told him I noticed that it improved slightly. So he suggested I see my primary doctor and have them refer me to a Urologist for Interstitial cystitis. It is very frustrating, I feel like I am too young to have all these issues, I asked him if the IC is related to the hysterectomy but he said no. Since then I have been researching it. I have not been diagnosed because I have not seen a Urologist yet.

Last night I had to pee about 8 times in a row with only about 5 minutes inbetween voids. It is so frustrating because I feel the urgency to go and can't fall asleep because of it. So I have to keep getting up to go. When I go only a little comes out. It feels like a UTI and I have suffered from these symptoms for years. I never told anyone accept my husband because of shame. I actually felt a little stupid because I honestly felt that the urine exits out of the clitoris. Since my clitoris feels OVERSTIMULATED and sensitive and this is where I feel the urge to pee. I seriously thought I peed out of my clitoris. Recently, I stopped allowing my husband to give me oral pleasure because it always worsened the sensitive sensation. It feels like I have to either pee or orgasm. This is why I was so ashamed because pressure on the clit would seem to decrease the sensation so I would masturbate. Not because I was aroused and seeking pleasure but because the feeling is so annoying and frustrating that I wanted relief. Immediately after masturbating, I would feel like I had to masturbate again and again because the relief was only temporary. So I would masturbate multiple times in a row sometimes 10+times in one sitting. Then I would experience pelvic pain and the urgency to urinate. I would try and stop masturbating but the sensation was overwhelming and I would give in. I felt so ASHAMED!!! I have had this my whole life, I remember as a young girl humping pillows etc. But who feels comfortable talking about this? So naturally I kept it inside never addressing the problem and felt guilty everytime. I knew I wasn't a Nymphomaniac. I can't achieve orgasm with intercourse so naturally I don't crave sex for pleasure but rather to experience the oneness with my husband that this type of interaction achieves. I stopped masturbating altogether for about two months now and wouldn't allow my husband to touch my clit until last week he licked me but I didn't want to orgasm. Since our encounter last week where I allowed him to do this,  I have been experiencing the same sensitive overstimulated sensations like I have to either pee or touch myself to achieve orgasm because pressure on it initially helps but is never enough. Luckily I was able to overcome the temptation and have not touched it. I know for a fact that I don't have a UTI, doctors always tried giving me medication for these symptoms in the past even though my urine was clean. The medications were of no help, in fact during this time I found out I was allergic to Macrobid; I broke out with hives from head to toe which was MISERABLE!!! Still having no solution to the feeling like I have to pee every minute. Which was EVEN MORE MISERABLE sitting on the toilet every few minutes covered in hives... FUN! So last night I was just so frustrated. I told my hubby that it felt like the urine was coming from my clit, but I didn't understand because I know now that it doesn't come from there ( I found this out when I needed a cathedar put in when I was delivering my children... I was suprised where they were putting the Cath because I expected them to put it in my clit)

My husband said that is weird and suggested I google it. It was then that  I had my HALLELUJAH MOMENT!!! There is a name for what I have, a diagnosis for exactly all of my symptoms!!! Restless Genital Syndrome or Persistent Genital Arousal Disorder fits my symptoms to a "T". Honestly, I started to CRY!!! I thought I was alone. I felt so much shame about what I was doing in secret. I am a Christian and I would struggle thinking that what I was doing was not glorifying to God, and everytime I would give into the temptation I would feel extremely low and guilty. I even got a hypnosis download on Sexual Fetishes thinking something was seriously wrong with me since I didn't know why I could not stop. Truth is it takes a long time to orgasm with oral sex (poor hubby) but I could masturbate and orgasm within the first 2 minutes and orgasm back to back to back no problem. So I was desperate and resorted to hypnotherapy thinking it was a fetish since I couldn't easily orgasm with oral or with penetration at all while being intimate with my husband. So I haven't orgasmed for 2 months and I am afraid that I won't ever again, I don't want to allow my hubby to stimulate my clit because just from him being playful in that area the other day I am now experiencing the symptoms of RGS, and they are so unbearable. Since Overactive Bladder is a symptom of RGS and I also have been suggested by my doctor to have Interstital Cystitis which is related to the bladder as well I am wondering if CI and RGS or PGAD are linked? Would I bring up RGS to the Urologist when see them for all of these issues, is that their specialty? This issue needs to be solved, no more Shame... I am just going to tell the doctor because I need answers. I have read that not much is known about RGS which makes since, I am sure that people don't really feel most comfortable addressing these shameful and embarrassing issues and I have found that even my GYN doesn't really show comfort when talking about sex, I thought my GYN of all people would be able to tell me why I can't achieve orgasm with penetration. I read that it is actually quite common and that most women only achieve an orgasm with clitiral stimulation. Well, that sucks for me because I am afraid to do that because the pleasure is not worth the uncomfortable feelings it brings after the fact. When I was reading about RGS I found out that most women who report this have had a history of sexual abuse in their childhood (which is true in my case:'( ) and also it is most common with post-menapausal women because of the hormones. Well, I am on HRT, and as I stated before I felt like I had a hormone imbalance because I had hot flashes since puberty but since I have been on HRT because the surgery forced me into surgical menopause the symptoms of the Restless Genital Syndrome have increased. Does anyone have any knowledge or experience on this? Are the two linked?

Thank you for your time. I appreciate any responses:)