Re: Please Help ! Going crazy... Jessica
From: Anna (anonymous@obgyn.net)
Wed May 18 23:36:04 2005
I am in the same boat as you!
I have endo, and I know, you always hear about pain with penetration
when it comes to endo. But for me, besides the pain with penetration, I
have this awful, awful pain just being touched. I have been told it is
vulvar vestibulitis. Look into it!!! Really, do. You might have an
"ahah" moment. It means that the vulva are very sensitive, and there is
even one spot that tends to be worse than others... (There may also be
a connection to Interstitial Cystitis --- don't know if you've looked
into that.) Check out this website: http://www.aafp.org/afp/990315ap/1547.html
Anyway, I really feel for you. And no, I don't think you are being too
graphic. If we can't talk about this stuff, we truly will go crazy. And
I know what you mean about the grumpy husband situation too. It's not
easy for anyone.
Notice what part of your cycle tends to be better or worse. Then, if
you see a pattern, you can both look forward to the time that tends to
be better. This seems like good advice to me, though I've yet to find
I'm THAT predictable. But give it a shot, maybe.
I'm sorry you're on this boat too. None of us asked to be here.
Regarding the 10 different kinds of lubricant, I've been there too. I
have noticed that some kinds actually make it worse. Look out for KY,
the newer kinds that are more of a liquid gel, they really make my
problem worse. I forget what it is, but the base in Astroglide is
supposed to be less irritating and more calming to your skin. I have
found it to be very true, even before I read about it. I found a good
herbal one too. Let me know if you want the brand, I'll look and see
what it is.
One option is to try a prescription for lidocaine ointment from your
doctor. It stings at first, but give it 10 minutes and then try. At
least you don't hurt as much, it numbs the skin a little. Just don't
over do it or you won't feel much of anything at all! Sometimes I'm okay
with that too though.
Hang in there, you are not alone.
-Anna
At Tue, 17 May 2005, Nicole wrote:
>
>Hi Jessica,
>
>Mostly my pain during sex was with deep penetration, but not always. I
>remember times when it was almost unbearable right away like my insides
>were super sensitive. I never determined if it was worse closer to my
>cycle time or ovulation time, but that very well could have been. I'm
>sorry that I don't have real specific details for you, all I know is
>that I've been married for 10 years and for most of that time I have had
>painful intercourse. Not any longer though. :) Well, hopefully it
>lasts forever! Anyway, I hope this helps you in some way. Have a great
>day and let me know if you have any more questions/comments. Feel free
>to write me at my e-mail address too.
>
>At Tue, 17 May 2005, Jessica wrote:
>>
>>Thanks so much for replying Nicole. It always helps to hear another
>>person's story which is similar to my own. Can I ask, was your pain
>>during intercourse upon penetration, or was it only with deep
>>intercourse? I have found nothing that states any reason that I should
>>be having such pain right away with intercourse. Thanks so much again !
>>
>>--
>>Jessica
>>
>>At Tue, 17 May 2005, Nicole wrote:
>>>
>>>Hi Jessica,
>>>
>>>I'm so sorry to hear all the crap that you've been through! I am 29 and
>>>have been suffering for 12 years with no children. 1 lap surgery in
>>>1998 with laser vaporization therapy and no relief. Actually the pain
>>>got worse after that surgery as did the other symptoms. I too have had
>>>very painful intercourse for about 8 years due to the Endo. March 15th
>>>I had excision surgery with Dr.Redwine in Bend Oregon. He removed Endo
>>>on my bladder, bowels, uterosacral ligaments, ileum or intestines,
>>>cul-de-sac, cysts on my ovaries,and removed my appendix with Endo. also
>>>a Fibroid the size of a small grape fruit attached to my uterus. He
>>>also performed a presacral neurectamy which is the removal of the
>>>stomach nerve. Anyway, I have been feeling great now for 2 months and 2
>>>menstral cycles. I have had NO pain during sex and no sickness side
>>>effects like diarrea, etc. that I suffered with regularly before. I
>>>hope this helps you in some way. The pain that I used to endur during
>>>and after sex was terrible enough to not want it at all. Since I
>>>haven't felt that way and I've been able to have sex for 4 weeks now I
>>>know it definately was the Endo causine the pain. Take care of
>>>yourself! :)
>>>
>>>At Tue, 17 May 2005, Jessica wrote:
>>>>
>>>>Quick history of my endo. I am a 22 yr old female. 3 years ago I had
>>>>my son. In January of this year I went to the emergency room with
>>>>extreme pelvic pain= ruptured hemorrhagic ovarian cyst. (1st lap) Let
>>>>me comment here that before this I only had some pain with periods,
>>>>which I considered benign and never sought treatment for. During the
>>>>first surgery, I was diagnosed with endo. I was then put on BCP for
>>>>treatment. Made it one month before another trip to dr and emergency
>>>>room. (2nd lap) This time, my dr took out my appendix also because he
>>>>thought this might be a cause of the pain. Initiated LUPRON therapy 1
>>>>wk post surgery. Got my first monthly injection, and 3 wks later, back
>>>>in the hospital with more severe pain. 3rd lap: I developed some
>>>>endometrial scarring in one of my abdominal scars from the 2nd surgery.
>>>>Extremely painful cyst on the highly innervated peritoneum. My dr
>>>>decided post 3rd lap that the monthly injection had worn off too quickly
>>>>and switched me to daily injections. Went through a course of dailys
>>>>for 1 month, then got another monthly injection. Which brings us to
>>>>now, 3 weeks later. One thing is for sure. I hate LUPRON. I feel
>>>>crazy, depressed, sick, tired, not to mention HOT all the time. But
>>>>this is not my complaint. I can deal with the side effects. What I
>>>>cant deal with is the pain that I am now having, again. 3 wks post
>>>>monthly injection, and I have sharp pelvic pain, radiating into my
>>>>thighs and vaginal area. Not to mention, a new symptom. Awful pain
>>>>during intercourse. So much I dont even want to have sex. My doctor
>>>>tried to tell me it was because of vaginal dryness. Sure, ok.... enter
>>>>about 10 different types of lubricant. Nothing is working. It is not
>>>>the lubrication issue because we lather that stuff on ! Sorry to be so
>>>>graphic, but it still hurts like hell. This pain with sex thing is new
>>>>to me ! And I have researched it only to find that it is usually with
>>>>deep penetration due to pressure on the uterosaccral ligament. Nope,
>>>>this pain hurts as soon as he even gets his fingers inside me.... Anyone
>>>>know what is happening here? My husband is going crazy from lack of sex,
>>>>and I am going crazy between the Lupron and his
>>>>grumpiness.................. HELP...
>>>
>>>--
>>>Nicole Hartley
>>>
>--
>Nicole
>
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