I'm particularly interested in helping women who have lost interest and pleasure in sex and working with their partners who navigate that journey with them. There are so many reasons a woman might avoid sex, it could stem from exhaustion, to relationship problems, to painful sex experiences, and whatever might fall in between. I enjoy helping these couples reconnect, strengthen their relationship and enjoy a fulfilling sex life!
I know you are all from across the world, so Caryolynn might not be the answer, but therapy could possibly be. I know I shouldn't be talking since I stopped going after two visits to someone near school, but I think it's important to do. I'm having difficulty opening up to anyone, so I know it's something I should work on and I urge you all to do the same. We have control over our life. Maybe not medically speaking, but everything else is ours for the taking. And don't you think life has taken too much from you already? It's time to make a positive change.
I'm exhausted, but I'll update tomorrow about all the new medical information I found out this week. Also on a personal note, I have just finished filming for a True Life episode for MTV. It's actually called True Life: I can't have sex, but it centers around me and two other women with similar medical conditions. It's set to premiere July 22nd at 10pm. I'm hoping it raises awareness for all of us, so check it out if you can.
14 comments:
Hi!
I just want to start off by saying how amazing you are to keep your head up in this situation. I feel like I have a lot in common with you and your life. (I am a college student that has also played tennis all of my life and it is my passion)..
about 8 months ago my gyno had prescribed me NuvaRing since I had been off the pill for about 5 months and was thinking about getting a different form of birth control. I am pretty laid back so I decided to give it a try. Well, a month and a half of using the rings I started to get shooting pains up my vagina. I called my gyno and she told me to stop taking it once I had finished the 3 week cycle.. but it only got worse.
I started flaring up getting extremely red and sore on the left entrance to my vagina. Sex quickly because extremely painful and I was scared out of my mind.
I went in for my gyno to look at me and she said she saw nothing, there is nothing wrong. she tested me for std's, had me get utra sounds, the whole 9 yards. When I came back in for a follow up on all the tests, she told me there was nothing wrong with me and that if anything it would have to be endometriosis. I went straight to google and looked up the symptoms and it sounded slightly similar except the pain had an exact spot on the entrance. I started typing in my symptoms and after 6 hours of following lead, low and behold.. I found VVS.
I called her immediately and told her what I thought I had. She told me she highly doubts it and that I should just go back on the pill. I asked her to please treat me for VVS and she said she would but instead called me in a prescription for lidocaine cream. which barely helps compared to the pain caused from "attempting" to have sex.
She told me she was so sorry the BC did this to me and she would have to talk to the NuvaRing rep the next day and she would get back to me. I waited 4 days. She never called me back.
I am currently at a new gyno who admitted that there is not a lot of information out there on VVS and prescribed me estrace to apply once daily on the affected area. I did not have any burning like you did and it is seeming to help. I do not think my case is as bad as yours because other then completely irritating the area by attempting sex I can sit comfortably. I did the estrace for 4 weeks, went back with some improvement to the area and I am currently continuing another 4 week treatment of estrace. My new gyno promised to research more options for me the next time I came back.
I am still in the beginning stages of figuring out what will work best for me.
I have read every single one of your blogs. The ones in the very beginning, where you tell how you feel, is exactly what I am going through right now. I wish I could go back in time and never get near the NuvaRing.. and I hoped going into the doctors office they would give me a pill to take for 2 weeks and be done with it.
This is by far a very depressing thing to happen and it is such a help to read your inspiring words to keep on fighting. Thank you so much for posting this blog. There is such little information to be found on VVS that I have done most of my treatment research. I really feel like there might be a light at the end of the tunnel. I hope.
Thank you again for sharing and telling other women know that they are not crazy and not alone.
Jenna
My husband and I are seeing a therapist for the very reason you described. I had painful sex for so long without saying anything (I know, stupid stupid decision) so now I just can't even stand the though of it. It is incredibly painful emotionally to love my husband so much and have absolutely no desire to have sex with him. I beleive that the therapy is helping, slowly but surely. I'm glad you posted about this. In some cases, it takes more than physical healing to heal the situation.
Jenna, I'm glad you were strong enough to demand answers from your docter, and when you didn't get them you went to someone else. For many of us, just doing that took years and I think that you really did yourself a favor by addressing it quickly. Hopefully that means that your VVS will not get any worse. Good luck to you!
www.downtherevaginalpain.blogspot.com
Tamra, as always, your courage and grace is such a gift--thank you.
Jenna, I am 31 and started having pain 10 years ago after going on the pill for the first time. For a decade, I have been unable to have intercourse even though I have tried dozens of therapies. I finally decided that I was ready to try surgery since I had come to the end of my rope. I made an appointment with Dr. Andrew Goldstein 6 months ago to discuss the matter. He agreed I was a good candidate for surgery since my pain was very localized. However, just to rule out a hormone connection, he tested my estrogen and testosterone levels. The results indicated that my testosterone levels were very very low, something he frequently sees with women who have been on the pill. He told me that testosterone receptors actually influence the sensation of pain in the body. To make a long story short, he put me on a topical estrogen/testosterone compound and for the first time in a decade I can have pain free intercourse whenever I want. And the testosterone has increased my sex drive noticably. My boyfriend (and I) are thrilled.
I am not sure if this relates to your case, but I just mention it because for a lot of women there clearly is a hormone connection. Dr. Goldstein says unfortunately I'll never be able to use a hormone-based contraceptive, and I am currently researching alternatives to the pill and condoms.
I'm so sorry about your pain, but do follow up on the hormone connection! Good luck.
Anonymous,
I am also seeing Dr. Goldstein and he prescribed the same treatment for me. My situation is definitely improving and I am very hopeful that it will continue. I haven't reached the point of trying intercourse yet, but your story makes me very hopeful!
www.downtherevaginalpain.blogspot.com
Tamra
Thank you for telling me about yourself!! It gives me some hope that one day it will completely go away.
After all of the doctors I went to that did not have any solid answers for me I started researching as much about it on the internet as I could. I came across just one other person that said they had an estrogen/testosterone cream and they gave the percentages. I copied that down and brought it to my gyno and she said she had no idea what the testosterone would be in there for so she gave me the estrace instead.
Would you be able to tell me what the percentages were that you were prescribed? I go back in about 3 weeks and Im going to suggest I try that and see what happens. out of all the tests I had to do they never ever tested my levels of estrogen or testosterone.
Thank you thank you thank you for sharing this information!!!! I really appreciate it. Im sure you understand what kind of slump I am in right now! So glad to hear that everything worked out for you, I am so happy for you! :)
oops! sorry, I did not mean Tamra, but the women that posted back to me anonymously. I got that mixed up! Thanks again!
Tamra,
I've been looking all over for the True Life episode but I can't find it anywhere or that it was aired on July 22. Do you know anything about that? Did they change the date? I really wanted to see it, but could never find it. Thanks.
www.downtherevaginalpain.blogspot.com
Sorry!
It looks like the episode has been pushed back a few weeks because MTV wants proper time to promote it. I will let you know as soon as they tell me the new date.
Thanks. Have a great vacation!
for those of you that used the Testosterone cream- was your pain mostly at 5,6,7 (the bottom of the vestibule) OR was it the entire vestibule?
Tamara- I cant wait to see you on the MTV show!!
Faith,
My pain is at the 5,6,7 area and only there. Every other part is pain free.
Jenna,
Thank you for your warm words- it's amazing how similar our stories are. Another tennis player!! I think it's great we started a dialogue here. I think the best information I have gotten is from other women. Eventually I would like to see doctors be as informative, but I think what we're all doing is great. Thank you everyone for reading and responding. Collectively, we have a lot of great information to give each other!
Hi. I am so thrilled to see someone openly talking about this issue. I don't know anyone else dealing with this, so it is difficult to talk about it with people that do not understand it. I am a 24-year-old who has been dealing with this for 8 months. I believe it was the Nuva Ring that caused my problems. I have gone through numerous creams, pills, etc. and many of them have made it worse. I have recently gone the route of botox injections. It worked for about 3 weeks, but I just had a huge flare up 2 days ago. I am devistated. I have a wonderful boyfriend that I have been dating for over a year, and I am livid that I can't be intimate with him. I hate it. I am constantly thinking about my pain. It is controlling me emotionally and mentally. I am having a difficult time dealing with this. Sometimes I feel like I have no hope for the future. How do you stay so strong?
Anonymous,
I'm so sorry to hear about all your pain and suffering. I know how you feel about not being able to be intimate with your boyfriend and how alone you must feel. I think all I can say about staying strong is that I'm not all the time. No one will deny that this is a very difficult physical/emotional pain, and you shouldn't expect yourself to be positive the whole time. It's okay to break down and okay to feel weak. Really, you are staying strong simply by getting up every day and continuing to find out more medical information. Remember, you are part of a big community and do not have to do this alone.
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