Sexual Dysfunction/ IC

[Elanami]

Hi I am new to this forum had previously used the MGH forums. I am a 60yr young married female/through menapause and 8 spine surgeries/2rotator cuff .I had 3 fusions & the last worked, I started surgeries in 1993 and my last was 2001. I am on SS disability and medicare. I know anyone who has had to deal with Soc. Sec. and hospitals knows what a delight that is.

A few years after menapause I developed a very painful condition in which I found intercourse extremely painful. I went to OB/GYN's and took HRT's (pills) and creams, Iwent to a urologist and he thinks it might be Interstitial Cystitis for which I am taking Elmiron.

The problem is that nothing helps and no one has offered a definitive diagnosis or a solution.

I think I am probably not alone and others might be experiencing what I am going through.

My injury was Work Comp (long settled) I also had a serious staff infection at one time and had to have it surgically removed twice.
You just can't help but wonder if this isn't all related somehow.

Thankyou for your time,
Peace and Blessings
Elanami

[BrokenBladder]

Hi I am new to this forum had previously used the MGH forums. I am a 60yr young married female/through menapause and 8 spine surgeries/2rotator cuff .I had 3 fusions & the last worked, I started surgeries in 1993 and my last was 2001. I am on SS disability and medicare. I know anyone who has had to deal with Soc. Sec. and hospitals knows what a delight that is.

A few years after menapause I developed a very painful condition in which I found intercourse extremely painful. I went to OB/GYN's and took HRT's (pills) and creams, Iwent to a urologist and he thinks it might be Interstitial Cystitis for which I am taking Elmiron.

The problem is that nothing helps and no one has offered a definitive diagnosis or a solution.

I think I am probably not alone and others might be experiencing what I am going through.

My injury was Work Comp (long settled) I also had a serious staff infection at one time and had to have it surgically removed twice.
You just can't help but wonder if this isn't all related somehow.

Thankyou for your time,
Peace and Blessings
Elanami

Elanami hi and welcome to the board. I'm a 42 year old female with IC and was diagnosed in 2001. Many painful years ago. Here's what concerns me about what you have said. If your urologist did no testing then how does he/she know that it's IC. When I was first diagnosed it was a 2 step process. First in the doctors office he used a cathetar and put something into my bladder for which I had no reaction. Then he emptied that out and put something else in my bladder in which I almost came off the table!! He said right then and there I know what's wrong with you. When I got dressed and went back into his office he explained that the second solution that he put in my bladder was potassium, which is something that IC dosen't handle well at all. He didn't stop there though. He scheduled me for a hydrodistention with cystopsy that was done on an out patient basis at the hospital to rule out bladder cancer and also so that he could see how much bleeding there was on the inside of my bladder wall. There was no cancer but I had a definate answer that I have IC.
I also take Elmiron, 400mgs per day, but I don't get relief from it. The real intent for that medication is to stop the progression of IC. Elmiron can have some pretty heavy side effects as well like losing your hair and nausea with vomiting.
Based on what you've said, I truly don't think your urologist is doing a very good job!!
If you have more details to share please feel free to post them here or PM me. I usually hang out in the chronic pain forum but I saw your post and felt the need to respond to you. IC is grossly misunderstood not only by friends and family, but also by doctors. I wish you the best, but truly there is no fix for what we have.

[Cry Tears]

Elanami...I know exactly where you're coming from. Painful intercourse is caused by muscle disfunction in SOME women!
I'd had many UTI's....I was surgically menopaused at age 36 when had total historectomy, both overies taken as well.
I've been on HRT for years...but because of mal absorbtion I'm using the vaginal esta ring.
Its helped some, but not what I'd like. I just turned 55 in January. I too was prescribed creams, lubricants etc to help with the painful sex...I really felt I needed a shoe horn! LOL! It feels that bad!
My Gyny had no other suggestions other than to feel bad for me...but did suggest I see a Urologist.

I finally saw one, Dr Peter Ruff...he's moved to Texas since, but I'm now seeing another good Uro doc.
YEs thats his real name! LOL!
Dr Ruff examined me...very painful ordeal always left me bleeding my tissues are so tender...my gyny had no answers, but this guy told me I need Physical therapy!:eek: I'm thinkin...this young guy is nuts! But he's part of a very good hospital system...everyone loves him.
I'm very skeptical in thinking of all he's telling me about this PT.
OK...I finally get in to see her....she explains that the muscles in your pelvic floor can and do have disfunction just like your back muscles can experience such as knots and trigger points.
She went in vaginally...very tenderly...found each knot....would do trigger point release on them by holding and pressing for a few seconds. You could actually feel some of them "POP" when they finally released.
After just a few sessions of this...It no longer hurt to have sex! Wow! That was first time in years!
And I actually began to enjoy sex like before.
And no more UTI's...unbeleivable.
But my insurance fought me on this....@$50 per session and hours drive, I just didn't go anymore...
the UTI's came back as well as painful sex. I also have severe fatigue...so not very motivated to go anywhere!
I am getting SSI but not Medicare...have husbands insurance.
With Dr Ruff moving out of state I was forced to be seen by another Uro.
He too agree'd this was my problem...is finding a PT closer to my home and will fight insurance for me on this.
Said this is not reallly new stuff, but most doctors are unedu about this.
You'll find all sorts of info if you just Google search "Painful intercourse, trigger point release".
Any questions you have, feel free to ask. I'm so glad there's hope and we no longer have to suffer painful sex!
It actually felt like I was way too small for intercourse....like a virgin! Its that painful. It always leaves me crying and bleeding...torn tissues and hurt...but what do you do when your loving husband has needs?
He has been so patient and understanding...but I'm wanting to please him as well. Life just isn't fair sometimes, is it!
Blessings, cheryl
I'll try and post some links if I can get it to work.

http://www.pthelp.com/when****-hurts.htm

http://www.ic-network.com/guestlectures/anderson.html

I'm quoting from one of the sites I've suggested:

"Trigger points can cause numerous symptoms besides pain, which may include weakness, dizziness, blurred vision, goose bumps, headaches, pain during intercourse, nausea, diarrhea, numbness, and cold extremities—depending on the location of the trigger point. Dr. Travell believed that fibromyalgia could begin with the appearance of trigger points in various places of the body."

[BrokenBladder]

There are TWO things that could be causing painful sex. One being IC and the other being pelvic floor dysfunction. If its the latter then you would be able to have the trigger point done and feel much better, but if its the IC it won't work. I personally have both.
Do sorry you guys are going through all of this!!

[Cry Tears]

I'm sorry for all of us to not only suffer diseases, but lose part of being a woman...unable to enjoy what God created us for....Housework! LOL!
Just kidding on that part. Lisa, yes you're right...not all pain is going to majically disappear from having a PT put her finger on a pressure point in your Virginia! But IF per chance it is muscle disfunction, trigger point therapy will make all the difference in the world! It really works! Wow!
I do hope some women will read this and take action as they don't need to suffer.
Your husband can also learn how to do the trigger point release!:D
OK...I need to be sensitive and be compltetly PC...so I'll include: Significant other, partner, what ever and whomever you share intimate pleasures with!
That'd be fun! Make it date night game! Then make him give you the $ saved by not going to PT! Hey...good way to earn shopping money!
Theres more than one way to skin yer monkey! LOL! Huma, huma, baby!
Cheryl

[nwtsbtr]

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