Sjogren's Syndrome Support Group

Sjogren's syndrome is an autoimmune disorder in which immune cells attack and destroy the exocrine glands that produce tears and saliva. It also associated with rheumatic disorders such as rheumatoid arthritis, and it is rheumatoid factor positive in 90 percent of cases.

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willows4u 01/15/2011

Hi all~
I have read many posts of the pain we feel because of SJS. Many of us have pain from the time we get up to the time we go to bed. Some of us have joint pain, some have muscle fatigue and pain, and many of us have various other types of pain. All of us have watched as this disease affects not only us, but everyone we come in contact with.
All of us have lost complete normalcy in our lives because of our disease. There was one aspect of my life I thought that this disease would never affect, but now it has and I don't know how to deal with it.
This topic is very personal and embarrassing to talk about, but I need to know if anyone else has this problem because I am having a really hard time with this one.
For the last year, I am unable to orgasm without having severe pain in my arms and legs at the very start of the orgasm. It has gotten to the point that I don't even want to be intimate with my husband because I am so afraid of the pain caused by orgasming. At first he thought I was cheating on him and that was the reason I did not want to have sex with him. Then I let him see what happens and confessed that having orgasms causes such great pain that I don't want to have any. He has tried a couple times to help me through it, but I end up in a fetal position crying my eyes out and begging to die!!!!
I have tried getting drunk to lessen the pain. I have tried taking narcotic pain meds about an hour before, but it does not help. I don't know what to do and I feel so horrible that this is affecting my husband the way it is. This diseases is not fair to us, but I feel like it is my disease and it is not fair that it is taking this pleasure away from my husband. I told him I give him permission to leave me and find a woman that can satisfy him in that way and that does not have a disease hplding him back.
I realize that this is very personal and if you don't want to post anything on here, please sent me a personal message. I already feel like a freak because of the way I walk due to the joint pain and damage and now I feel even more abnormal.
Thank you!!

deleted_user 01/16/2011

Hi, Willows - I'm sorry to hear about the pain you're having. I'm also sorry to say I haven't had that problem (sorry because you may not have anyone to share this particular pain with). I can barely get through sex, but it's because of the vaginal dryness and resulting pain. (Most positions also hurt.) I would ask if you've talked to your doctor about it, but that wouldn't do any good - they are clueless. I don't know what to say to you except, I'm sorry - I really feel for you.

Hang in there.

deleted_user 01/16/2011

I know it is embarassing but you do need to talk to you doc. He or she may not understand what you are going through but they need to check for neurological problems. I have worked in a physical therapy office for many years in the past and volunteered there even before I was old enough to work legally. I met a few women with similar problems. They were diagnosed with peripheral nerve damage. Orgasms set all the nerves on the body to fire in order to create the intended pleasure. Other activities could cause symptoms as well. If you are not comfortable talking about this or anything else with your doc you may need to find one you are willing to confide in. Please seek mnedical help this could become serious. It may be more than a gyno problem. Also you don't want to damage your relationship just because you are too afraid to get help- and help is out there.

deleted_user 01/16/2011

PLEASE do talk to your doctor. It really helps push the knowledge base, they can't help us if they don't know what our problems are. Keep asking until you get some help, if it is beyond the realm of one doctor, ask others. My partner and I both work in health care (he's a nurse, I'm a physical therapist) so I can assure you this should not embarrass your doctor, unless he/she is really young they have heard many stories like yours. In fact you are giving him/her the chance to help you improve your quality of life, which is why most of us are in health care! I agree with what Christole says that you shouldn't let this one go because it is embarrassing, there just might be some help for you medically.
Your letter made me cry to think you would give up your relationship rather than seek the help you need and deserve.

willows4u 01/16/2011

Thanks for the responses. Some of the reason I have not talked to my doctor about this issue is out of embarrassement. Some of it out of fear that he will order more tests and either the\y will find nothing wrong and I will think it is in my head even more than I do already or they will find something and I will have one more thing to deal with.
I have been told that the SJS has affected my nervous system but that is as far as it has gone. No one has ordered any follow up on it and basically I was told "yep, it has affected your nervous system"
I do have issues with sever vaginal dryness and that was part of the problem, but there is a simple resolution for that problem.
From what everyone has responded, I am the only one this is happening to. I am happy for all of you that you don't have to go through this, but feel even worse that I do and I am alone in it.

tomsmom05 01/16/2011

Willows,
I know you feel this is an embarassing topic but you must talk to your doctor. To me, this seems like it's neurological in nature and it has to be addressed. Until you figure out exactly what's going on, are you able to still engage in sex with your husband without reaching orgasm yourself? This way he'll be able to enjoy this special time with you and you won't have to worry about the horrible pain that comes along with orgasm?
I'm sorry you're going through this. I'm sure your husband loves you very much. Take him with you to the doctor so he can share with the doctor what he has observed.
Take care. :)

deleted_user 01/17/2011

You may want to try to find a sex therapist if all else fails. I have never been to one but a friend has. While her problem was psychological she explained that these therapists have a vast knowledge of how mind and body issues affect sexual relationships. I excourage you and your husband to explore other ways to be intimate while you are seeking help. Ultamately this may bring your relationship closer if you tackle it together. Gook luck!

deleted_user 01/17/2011

No Willow.......you are not alone in this. I will email you.
I deal with alot of different nerve pain issues. If nothing else, we should be able to encourage each other! :)

deleted_user 01/19/2011

Hi Willow....I have to say your post brought me to tears. I have had the very same issue for almost a year now and nobody seems to understand. Although my pain is more centralized and stays in the abdomen....it is exactly as you described. I often get very nervous during intimacy with my husband and actually fear what is supposed to be the best part. I have been to several doctors, including OB/GYNs that cannot seem to find the cause. Hang in there.

willows4u 01/19/2011

Floridgirl and sportojenn44~
Thank you for sharing your stories. I know how hard it is to share something so very personal but at least each of us does not feel like we are alone in this and there are probably women with SLE that have these exact symptoms that will read this and feel less alone.
As I said in my original post, we have lost (or are losing) so much to this disease already and losing the intimate part of our marriage makes is suck just that much more!
Hang in there! You are not along!!

deleted_user 08/10/2012

There has to be a way to solve your problem. Try talking to a neurologist. they know the most about nerve pain. Hang in there until a solution appears.

Hugs,

Eileen

deleted_user 08/12/2012

You're not the only one! Dryness is the least of my sexual problems! It HURTS---dry or not--it hurts everywhere. I just want to say, "Get off of me". I say go to a big-time woman GYN. There may be one who even specializes in both issues. She may not solve the problem but she will help. Look at the teaching hospitals, like UCLA. By ALL MEANS: Take him with you. Hugs. YOU ARE NOT NOT NOT the only one.You know what else? We're not the only two! xoxo Summer

deleted_user 08/21/2012

Sorry to hear that SS has robbed you of your intimate time with your husband. I don't have the same physical reactions you do, but I suffer from such vaginal dryness that even with lubricant it hurts. Plus, I hurt during our lovemaking. Then there's the issue of having to deal with the vaginal swelling and burning afterward. It does not make the experience pleasurable. At this point my husband and I are focusing on other types of physical pleasuring (e.g. message, masturbation, kissing, snuggling, etc.) that does not involve penetration. You have to get a little creative and your husband will know that you still love him. Please talk to your doctor.

deleted_user 08/22/2012

Omg! Amen I'm not alone!!!! For a few years! I gave up!!!! Lol

deleted_user 08/23/2012

I have the severe pain in my arms, legs, my intestines, and my heart. I don't know what to do either. I feel the pain most of the time on a daily basis. Some times the pain in my arms brings me to tears when I sneeze. Sex use to be great, now I want to have sex, but my mind already knows that it will hurt. Sjogren's is NOT FAIR!!!!! I suffer from severe vaginal dryness I also get frequent yeast infections and bacterial infections. I also have nerve damage. Different positions are a thing of the past (at least for now); every position causes me pain. I drive myself crazy sometimes, because my husband is a police officer and well women love a man in uniform, a gun, and a badge. I am lucky my husband is a good man. I hope he stays that way. I pray alot. I don't have insurance, because I don't work anymore. My husband is the only one working, and we have 3 children. But my doctor did do some test in the beginning when I still had insurance and told me that I have nerve damage. Right sided weakness. It is hard because very few doctors know anything about sjogrens and I think that it is more of a learn as you go. I am thankful for everyone on this sight. I take comfort knowing that I am not alone. I have no shame asking or telling anything here.

Please if you find anything that alleviates the pain please let us know. I talk about things that I cannot talk about with family or friends, because they would not understand.

deleted_user 08/23/2012

The pain is horrific to have sex. And my husband says its my meds. I try to tell him as long as he is satisfied that's all that matters. I figure I don't have to feel satisfied anymore. If I do I feel selfish.;( I'm just trying to live.

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