Hi everyone.. I have a TOTALLY embarrassing subject to ask about and I've searched and searched for my answers but I can't seen to find an answer. Ok, here it goes..The last 3 months I've been having terrible pain after having "the big O". The muscle contraction that usually makes one say Oh God in a good way is now Oh God in a very bad way. I finally went to the OBGYN and they did an ultrasound and I had cysts on my ovaries but they weren't bad at all. They are considering going in laprascopic but the Dr needs to find a general surgeon that is willing to go in with in. I asked him if it was possible that because of all the space from not having a colon, could things have shifted causing problems. He definetly was not up to speed with the j-pouch, so I think he needed some time to do research. That's the thing..There's hardly any info on this problem. The Dr had never heard of anyone having this problem. I can ignore of couple of times but not at 3 months!!! The last one was horribly painful, and I am seaching for any answer I can find. It's no the actual act that hurts in any way, its the growing to the peak, the peak, and then even after for awhile. Has this happen to any of you ladies? Can anyone illuminate this issue? HELP!!

Ok Margie, here goes...
The big 'O' as you call it is first an influx of blood into the area, a swelling of the tissues/muscles and then finally a very (hopefully) wild series of contractions...looked at that way it equals the same senario as a sprint...the muscles get hot, get worked and then go into contractions...or cramps...you need to stop those contractions from turning into cramps...so...you might want to try and see what happens if you take a mild muscle relaxant pre-sex...see if it stops the contractions from going wild and hurting...you may be one of the lucky/unlucky few who have massive contractions (which for a non-rectumly challenged person would be just fine) but you do not have anything behind the vagina to support it...or not. The waves of orgasm could be sending shock waves to your cysts and causing the rebound pain typical in cysts...I had severe pain when I had my ovarian cysts but it was whenever hubby was in too deep ( )...and touched them...I would hit the ceiling but not in a good way...so at the right moment, I was in too much pain to feel good and let go...test with both NSAIDs and then with muscle relaxants and then with both...also, you may want to do your kiegels more often..;it should reinforce the muscle walls and help you...
hope that this helps..
Sharon

Thanks Sharon. I'll give the muscle relaxers a try. NSAIDS are killers for me, so those are a no go. I definitely used to feel lucky...But now not so lucky .. Everything you said makes so much sense. I guess this all caught me by surprise since I had my surgery almost 11 years ago and haven't had any problems like this. I've had issues with the cysts on and of though. I'll also start up the kegels again. Thank you so much for responding. I appreciate it so much

Thanks Margie,
I try to be logical whenever I answer...and unfortunately I have wide experience with all of this stuff..if you can't take 'real' NSAIDs then go for the alternative medicine kind...go to a health food store to see what they have to offer...sometimes you can find natural alternatives that not only help with that but with other problems too..
Whatever you do, don't stress! It makes it worse...if you tighten up you will be infusing your body with stress hormones that will only make things worse, this is where a good bottle of wine or a good truffle or piece of chocolate come in...they send pleasure hormones surging through you and help you to relax (of course you need to enjoy either wine or chocolate!)
Have you tried the big 'O' without penetration to see if it causes the same problems?
At one point I had what turned out to be a severe case of Salpingitis (a calcified ectopic pregnancy that cause a severe infection in the tube)...we didn't know what it was in the begining but we knew that I would nearly pass out from the pain whenever we had sex...my doc, in his infinite French style wisdom told me to tell hubby to 'aim left'... ...which led to peals of laughter on the part of hubby...So ask hubby to 'aim elsewhere' or try changing positions to see if it helps...and Do do those kiegels!
Sharon

Some on here have posted about having their C/R surgeon's in the operating room during other abdominal surgeries.

I'd already had a hysterectomy and then menapause when I had my surgeries. I had the C/R surgeon take out my ovaries when he took out my colon. (All they could give me anymore was ovarian cancer, so I ditched them too.) I'm throwing this in here because if you do need surgery maybe you should consult with your C/R surgeon or have your OBGYN consult with him/her. Also maybe there is another OB that has experience with j-pouches.

Hopefully Sharon's helpful hints will work!

Ok Sharon, I finally have another bit of info..When you mentioned cramps, I've definitely decided that that is 100% correct! I tried the muscle relaxers but it didn't help. I tried not to worry or stress and hoped for the best but along came the nasty cramps. It's almost like labor pains that grow and peak.. I'm going to call the OBGYN tomorrow and see what he decided and if he found a surgeon. I'm afraid I already know the answer since they haven't called me.

Toughenough, My CR surgeon here isn't the one who did my surgery. We've moved several times since I had the surgery (we're military). I don't really like him at all and I don't have any other choice in my area but him. It's funny because I assumed that because the GYN was older that he would have at least seen a couple J-pouches! I was wrong I wish I had ditched the ovaries too..They have been nothing but a pain. I had my surgery when I was 26 so they probably wouldn't have even considered it, but then again, who knows? Oh to be able to rewind time...I would have done things so differently

I had my "hystericalectomy" at 40 and the wouldn't take my ovaries because they didn't want to throw me into early menapause, so they probably wouldn't have taken your ovaries at 26. There aree general surgeons that perform colonoscopies. Maybe a consult with a general surgeon would help. He/she might be more familiar and could do the surgery or be there to assist the OBGYN.

Isn't there a Mayo Clinic there? If your military doctors are not familiar with your complicated condition can you get a referral there that's covered? I remember someone that was military and they had them go to someone outside because they didn't have the experience required.

That plus your pouch inflamation and ulcers should all add up to needing a better specialist.

I hope you get relief soon.

Margie, have you been in touch with a nurologist? This is a shot in the dark but is it possible that you have blocked a nerve and it gets 'excited or stimulated' during sex? Maybe? What does you obsgyn say about this? Does he/she have an opinion? When was the last ultrasound? Could it be a sympathetic nerve vibrating the wrong way?
My other thought is...and this is far out...behind your pouch and is a curved space call the Cul De Sac de Douglas...it is the curve formed by your Sacrum&coxys...abscesses can form and go undetected there because no one is looking for them and due to the position and added pressure in the zone from sex you may be have your big 'O' contraction that knock against it...next time they do a scan have them check it out...I had turmors/sterile abscesses there that caused me the worse pain possible during sex (along with the salpangitis)...
Last resort for me would be to consult a really good acupunturist or chiroparctor to un-stimulate those sympathetic nerves...
Keep trying...this is too important a part of a woman's life to give up on it..
Sharon

toughenough,
I actually am going to Mayo. It's funny because they only have 1 CR surgeon. He won't do anything about my blockage issues unless it becomes an emergency situation, so I wouldn't even consult him for something like this. I tried to go to another doctor here but they won't take me as a patient. Another office said they don't take patients with jpouches anymore. I was floored that no one would do anything.. I don't like living in pain and I would think they'd care about my well being, but boy was I wrong! It was so hard for me to bring up this current problem to my GYN but I didn't see what else I could do. My GYN is stumped. He's never heard of this before..

Sharon, I've just had an ultrasound and a CT scan and nothing but the cysts showed up. Would an abscess show up in a CT scan?

I'm so sorry about Mayo there. It's horrible that they won't see you. When I got my 2nd UC diagnosis at the MN one I also saw a OBGYN and they worked together.

Hopefully your doctor will find another doctor to work with or refer you too. Sharon has great ideas and lots of experience. Maybe you can run them past the doctor that is trying to help you.

MargieR,
I specifically joined this website in order to help you. There are very few people in the world that know about this so I was afraid you would never get your answer. Ask your gyno or your GI surgeon to refer you to a Physical Therapy clinic in your area that specializes in pelvic floor/women's health. There are specific muscles in the pelvic floor, called the levator ani, as well as a couple ligaments, and fascia. After these surgeries, we get scarring, muscle trigger points, and fascial tightness in the pelvic floor, both in front in the vaginal cavity and behind through the anal cavity. The Physical Therapist uses ultrasound and will assess how your muscles are functioning and will actually examine you internally and work out the trigger points, from the front and the back (vagina and anus). You can find the PT's in your area online through a search as well, if your MD's are not up to date on this type of treatment. You need a prescription from your MD, in most states, and you can call the place ahead of time and make sure they have experienced woman's health specialists onsite. This is all hands on treatment. Good luck! Trust me on this one, it'll be like a miracle for you.

Margie,
Yes, abscesses do show up on x-rays and ulrasounds etc....I had a series of sterile abscesses in the cul de sac of Douglas (that curve that is created by your sacrum and coxys behind where my rectum used to be...painful as all get-out...I also had a severe case of salpangitis (severely swollen falopian tube with in my case a calcified ectopic pregnancy) that no one could diagonosis until they did HSG (hysterosalpinography)...very uncomfortable test but it did show the problem..in thoses days I fled from sex like the plague...it felt like I was being stabbed repeatedly with a knife...no fun...Gizmo has some great ideas...you may also wish to consult with an acupuncturist or an osteopath/chiropractor...you may have some spinal nerve blocages that get activated when you are in certain positions or are stimultated through sex...I have heard of certain specialists manipulating the spina through the anus to relieve certain nerves....I am all for it if it works and gives you back a happy and healthy sex life.
Sharon
ps...have you tried yoga?

OMG Gizmo that's exactly what I'm doing! The OBGYN offered it as a possibility and I decided to give it a try! I started last week and you are right, they found several problems. It has been such an interesting experience to say the least. I had no idea what I was getting into but it all makes so much sense! I'm going to give it a test drive this weekend and see if it's helped, lol. Thank you guys so much for your insight. You are all amazing people to take the time to help.

My poor husband, wish I could say it was 3 months ago....