Hey there...Your theory proves correct...No one is talking about the sex perspective with this disease. IMO we feel "less than" enough and we are too humiliated and embarrassed to discuss the issue. I SO WISH I could give you the answers, sweetie. I am approaching 53 this month, so I'm at a "different place" in my life. I was 33 when first diagnosed. I, like you, had/have pain with/after intercourse. I knew "something" was wrong for years but no doctor would investigate. I was always such a romantic with candles, bubble baths for 2, jams and jellies, music and wine...oh my=) I would often do a striptease for my husband. I was wild and crazy even performing the sexy moves on the hood of the Jag (from the "White Snake" video) YES...I was an "80's big hair MTV babe" or so I thought. I was always the "performer" until I was alone afterwards in the bathroom sobbing in pain.

I know that I'm an old veteran now @ 53 in this battle (and on this forum) However...It's the same shit in a different day...decade. I'm posting this TMI insanity to perhaps open the door for other ladies to chime in. They will...just keep your post bumped. Meanwhile, I thought I could at least entertain you with my DARK humor. Then I realized as I typed that few, if any, would relate to my references.

My point is this...I encourage you to reach out to fellow "fighters" as you are doing. Don't be embarrassed or feel less than a woman should feel about herself. I will always remember a statement made on the topic of painful intercourse. I think it was Vans (forgive me if I'm wrong) that said "If inter is too painful, there's always OUTERCOURSE". As I said from the start...I'm further along in this struggle with penetration NOT an option (for many years now). I require (literally) sedation for a pelvic exam. We still have a passionate relationship, whether it's fighting or making up afterwards=)

I promise with all my heart that I say nothing with malice or intent to frighten anyone. I share my experience because I finally CAN. I also want anyone who reads this (or any of my posts) to realize that IF I CAN survive this madness, they can too. My marriage has survived it too. We will CELEBRATE 34 years of wedded...hmm...b-b-b-liss this summer. It's been ROUGH as with any marriage, and almost ended @ 15 years...but through the grace of God we remain united on all fronts. It's not been the life we planned, but really, is it EVER?

We wanted babies (at least 2), but it wasn't possible. I won't lie and say "that's okay" for me personally. It remains to this day an emptiness where there shouldn't be. I STILL grieve the fact that I don't have children and grandchildren. We would have been great parents and I could have been a wickedly good grandma! I digress (sorry).

My husband WAS like most men with sex. I went through the motions, but it ALWAYS hurt my insides. I could never even comfortably insert or wear a tampon. I loved the foreplay of touching, holding, kissing, caressing and fondling...yet I secretly dreaded penetration. Of course, I now know that I was "tensing up" and therefore making matters worse. I remember telling my GYN and he suggested a "glass of wine" every night. Over the years, my pain got much worse and I could no longer suppress that from my husband. He began to "fear" penetration because he didn't want to "hurt" me. We tried lubricants, but MY pain was deep inside my vaginal canal, not an issue of dryness. Fast forward to post-hysterectomy in 1993-94...I lost my sexual desire. I was not allowed to have hormone replacement so I went through the hell of surgically induced menopause. I certainly didn't want sex. I didn't want a husband=( We went through counseling and learned that lovemaking doesn't have to include intercourse. OUTERCOURSE has enriched our relationship.

I'm NOT SAYING this is the way for you and your husband. I AM SAYING that you can satisfy your husband with your hands and lips, if penetration pain is keeping you apart. Don't let the "distance" grow between you as you figure this out. Take care to preserve the intimacy through TOUCH. No disrespect intended, but the male anatomy just NEEDS regular "release"...not the romantic setting and rarely any foreplay. He can self-service or you can assist. I don't know that HE will ever understand your pain. You can educate him through technology that wasn't possible for us in the mid 90's. There are lubricants that can reduce pain of friction...some better than others. I'm sure you've talked with our GYN for any suggestions. Do you take OTC or prescribed pain meds? If so, perhaps "time" your dosage to give optimum relief upon penetration. I'm certain there are topical creams for vaginal pain, but avoid Lidocaine=) I once had a brilliant idea to "prevent" with a cream with 2.5% Lidocaine...WRONG...Let's just say it deadened the mood=(

I'm truly sorry that I can't be more helpful. This disease, as you know, affects us all in similar yet polar opposite ways. We have to seek the best medical advice available to us (which is often lacking). We also have to modify/adjust our expectations of not only ourselves, but our life partners. There is no right or wrong as long as you love and support one another.

~~Pup

I wish I had some advice that could help. But you are definitely not alone. My boyfriend and I have been together approaching 6 years now, and I was diagnosed with endo almost 3 years ago. I am only 25 so when we began dating we were always hot and heavy.

Now, he has been fighting this battle with me, but he definitely has times when he feels 'unwanted.' I think it is a man-ego thing (totally could be wrong). I have been struggling a lot lately and we have not been able to have sex in about 3 months now and I feel so awfully guilty. He understands that the pain during and after puts me into fetal position and in tears, but there are times when he definitely gets frustrated.

He actually came to the obgyn with me today and I think got a much better understanding of how the disease works. I don't know whether or not your husband has ever been to the dr with you, but if not it could be worth a shot.

the only suggestion that I have that works for me, is to always remind him that I love and appreciate him for all he does. That seems to help along with talking to him about exactly what it feels like (my doctor compared it to the pain from a twisted testicle and he cringed at that). we have found a position or two that works ok for us with minimal pain during, but afterwards I am always in pain. you could always try different positions gently to see if that helps.

I am so sorry I don't have more advice. but you are not alone in this and you and your husband are in this fight together.

Like the other ladies I wish I had more advice to give but instead I can mostly only offer empathy. It's been a struggle for me since long before I was diagnosed with endo. For a long time I thought it was normal and it would pass in time, but after years I figured this is just how it is. At one point I was so desperate I tried to find something that would numb the area, but I never actually tried and I don't think it would actually help because of the deep internal pain.

Thankfully my husband is super understanding, I think more understanding that I am with myself to be honest. I second Pup's advice about outercourse...there are a lot of things you can do to be intimate without actual intercourse. Beyond that, some positions, particularly those where either you have more control of penetration or that tend to have shallower penetration is a good thing to try if you have not (you likely have at this point, but worth a mention).

We've been together for 12 years now, married just the past few...so he's been there through thick and thin and knows how hard it is for me. There were definitely some hard conversations about it early in our relationship, before I knew what was wrong...but talking about it is the best thing you can do.

It is so nice to hear it am not the only one facing these issues. The support this site gives us all is so nice. Most of the advice given we have tried but will continue to try. I feel guilty about it so often that it just kills the mood. I know it is something that I need to work on and get past. I looked up a few counselors in my area and I think I might give that a try. I firmly believe that I need to work on not feeling guilty in this area of my life so that my husband and I can get past this a little easier.

Like you we are trying to get pregnant without any luck. So frustrating to me that this disease can control so many aspects of my life but yet no one knows how to take care of it how to cure it or how to help it get any better. My doctor tells me there's a chance I may never be able to get pregnant but she can't tell me anything for sure because there's not much research done on endometriosis. I've never been so frustrated in my life was something because I am so out-of-control there's nothing I can do to fix what's going on in my body.

Thank you for all your thoughts concerns and prayers I really appreciate it it's nice to know I'm not alone in this. Let's hope one day a doctor finds a way for endo girls to actually have a good sex life. Fingers crossed. Ha ha.

Oh mommatobe, I know just how you feel. Believe me! It's emotionally excruciating to have to deal with painful sex. Even getting aroused causes me heightened pain (which is a combo of endo and PCS).

I wish I had magical words of advice for you, because then I'd have them for myself, too!

There's only so much a man can understand about such things.

The only thing I can recommend is experimenting with different positions, you may find one that works. Sometimes it's an odd position, or one that isn't exactly romantic or intimate, but it works better. That's how it is for me.

That pain is awful, and during such an intimate and great thing...sucks! I had an ultrasound done a month ago, and I told my hubby how much it hurt (and mentioned it's supposed to be pain-less) and how I was in tears during it. He was like "huh, not just me, then?" I don't know if it helped his understanding at all, but it did bring to light that this is a very real pain, and I'm not just trying to get out of sex.

Come here when you're at the peak of frustration, because we all understand. I've found it to be helpful myself. You are NEVER alone here!!!

(HUGS)
~LL

YOU ARE NOT ALONE!

Like all of the lovely ladies here, I too understand this frustration, hurt, and pain all to well.
I can relate to SpeckledPup. I too was a performer who found myself sobbing in the bathroom afterwards. Then it turned into sobbing immediately after, and then, sobbing during. There is nothing like hot sex and a sobbing woman :)

My pain is frustrating because it seems to have little rhyme or reason. Sometimes I'm ok... other days I'm literally like "can we find some other way to finish?"

It's hard and it SUCKS!!!

I think this topic is avoided becaue it is embarrassing, but I think it's also avoided because no one has a magic answer that we so desperately want and look for.

I agree with what all of the ladies have said already... outercourse and strange positions are sometimes the best.

Try to educate your partner... if they love you, they may be frustrated, but they will understand.