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Odd cramping after orgasm and bowel movements
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Avatar_f_tn
Thats great something is working for you! :)  Does the fish oil make you burp fish taste? Fishy stuff grosses me out. Been wanting to try but afraid the fish oil will gag me....
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Avatar_m_tn
I am 41 and have had this pain since I was 24....just discovered this post and cannot tell you how relieved I am to know I'm not alone.
I looked up Adenomyosis and it makes complete sense to me.  My periods have become unbearable with terrible clotting.  Plus the worse than labor pain after orgasms and ovulating.  I have an appt. with my gyn. in 2 weeks and will be telling her Adenomyosis - I want to confirm then move forward with the hysterectomy.  I want an end to my pain. Thank you so very much for your post and all of the ladies who shared there stories!!
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Avatar_f_tn
You can get burp-free fish oil - it will say it on the label.  ;)
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Avatar_f_tn
Oh really?!! Awesome. Thank you!!!  Fishy taste gags me so bad, so this is really good to know. Thanks for the info! I am happy to hear you found something that works for you. I'm going to try to see how it works for me.
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Avatar_m_tn
I haven't had a problem with the fish oil :-) Still haven't had a recurrence of the pain or cramping after orgasm, unless I forget to take the magnesium for a couple of days and then I get 'reminder' cramps like period pains!
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Avatar_f_tn
the mirena iud can be life altering in the worst ways.  please search the side effects thoroughly.  many women are getting cancers, bv, PID, becoming infertile, having ectopic pregnancies, strokes, high bp, autoimmune diseases, etc.  mirena caused many problems for me.  i had none before mirena other than heavy bleeding without cysts/fibroids (scans proved none).  now i, and many other women, have cysts.  the hormone in mirena is the same as the pills you've been taking.  it does circulate its hormone as your uterus is connected to the rest of your body by your blood vessels, etc. it can also perforate your uterus and travel inside your body. best of luck!  
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Avatar_m_tn
I'm 31 from Australia and have been experiencing extreme cramping or contraction like pain after orgasm, bowel movements, arousel in dreams and vigorous exercise since I was 26. This cramping usually occurrs 10-12 days before my period and over time, the contractions have gotten more intense and are lasting for longer periods of time (20mins). I'm a healthy weight and I exercise regularly. The only time I didn't experience the cramping was when I was pregnant for 4 weeks before miscarriage. I assumed my condition was endometriosis for many years and only recently after having a laparoscopy and hysteroscopy for intertility reasons did I discover that it wasn't. The doctor did discover that I had many small fibroids in my uterus and my left Fallopian tube was blocked with scar tissue. My mother experienced the exact same symptoms but was free of the pain during all 5 of her pregnancies and now after menopause. I've read many of the threads from this post and I feel relieved that there's many of us going through the same debilitating condition, yet I feel depressed that the only real cure mentioned seems to be a hysterectomy. At an age where my husband and I are so desperately trying to conceive (in pain) and start a family this really isn't an option. I would love to know if there are others with fibroids who have had them removed and have seen the cramping subside???
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Avatar_f_tn
Hey I've been having the same problem! It's weird and I don't like it. But I'm glad to hear it's not just me gez. Thanks
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Avatar_f_tn
In Africa, having sex in the dream is attributed to spiritual husband or spiritual wife. I always had sex in my dream with a man and later without any man but in a position rocking myself and it was so sweet, u cant find it in real life. Then when I got pregnant i had erotic dream with pains after the orgasm that woke me from sleep, them it happen almost daily till i a failed abortion i.e the baby stopped growing at 7weeks but found out at 9weeks and had an abortion. Three months 3 weeks later, i got pregnant and it started again with pains, i had to try to stop my self from reaching the orgasm in dream while waking up to reality and it reduced the pain. I told my gynae she said i have psychological problem. I knew i dont have one. after child birth i have had it again but with no pain, but last week i noticed a little pain after i woke up with orgasm but am not sure. durind my c-section for my baby i was told i had fibroids, i guess it grows when am pregnant and refuced my cervice from dilating for my baby to be born hence the csection. Am glad am not alone and i will take iron tablets.
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Avatar_n_tn
I had a laparoscopic myomectomy to remove several small fibroids and it did not make any difference.  Generally, fibroids do not cause pain.  But of course this is something to discuss with your doctor.

I have been dealing with the same symptoms as you for about 11 years (it started at about 26 for me too.  It used to be only a week or two out of the month and over the years it's progressed to most of the month.  It's the same thing every month.  It starts a few days to a week after my period ends and gets worse until I start my next period.  Everything gets so tender and sore at ovulation.  I feel great while I'm on my period.  None of my gynecologists had an idea what it could be.  Since the doctor who performed the laparoscopic myomectomy did not mention anything about endo, doctors are thinking that's not the problem.  One doctor mentioned Adenomyosis, but I don't have some of the classic symptoms and you need a hysterectomy to properly diagnose.  I recently went to a chronic pelvic pain specialist and she sent me for a MRI to rule out Pelvic Congestion, which it did.  She believes that I may be suffering from tense pelvic muscles and she prescribed Physical Therapy as well as Cognitive Behavioral Therapy.  She also prescribed Levsin (Hyoscyamine) which is a anti-spasmodic for the really painful times of the month.  I haven't started my therapy yet but will be soon.  I think the Levsin helps somewhat, however my doctor said they work best with therapy.  

I hope to report back that physical therapy has helped.  
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Avatar_n_tn
Hi
So are you taking Magnesium, Fish oil, Vitamin D and Iron tablets and what kind of dosages? I'm willing to give anything a try to help with this, I have pretty much exactly the same symptoms as you, so just want to get it right!
Thanks :)
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Avatar_f_tn
Hi I posted 2 years and its now been 7 years since the pain started 8 in May. I just recently found out that I am pregnant for the first time and the pain is gone, or at least reduced tremendously! I was having pain every 2 hours except for when I was on my period and now barely once a day. My most intense are after an erotic dream. Other than that I've been able to sleep through the night with no pain for the first time in years. It must have something to do with hormones. I've had everything ruled out. Recently had my gallbladder taken out which was chronically inflamed but that didnt help with the pain either.
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Avatar_n_tn
Hi Everyone,

I saw a gyno for this issue and he has me using an asthma puffer straight after ograsm. It does reduce the pain very quickly. I also had a DNC and had an IUD put in (which releases hormones) & that has made a huge difference both to my period pain and pain after orgasm. Pain still there, but at its worst it is no where near what it was with out all of this. Plus the duration of pain is much shorter also. I have tried everything else that has been discussed & so far this has had the best results for me.
Dezie
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Avatar_f_tn
Hi Dezie44,
Could you tell me what is in the asthma puffer? It's simple enough that I'd like to try your solution.
Thanks!
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Avatar_n_tn
Hi Saarpaula,
The asthma spray is Ventolin Met-Aero & the gyno suggested to use a 'spacer' with the puffer as it enables the spray to get to contracting muscles quicker & more of it. I also had the DNC as mentioned & had a Mirena levonorgestrel 20mcq/24 h IUD put in & that has also assisted in reducing the pain. Good luck!

Dezie
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Avatar_n_tn
I've been trying the Magnesium/Vitamin D/Fish Oil/Iron combo for two weeks now and am pleased to say that I just....tested it out... and there was still a twinge but nowhere NEAR as bad as what it used to be. I have had a few glasses of wine after work but that normally that had no effect before so am unsure if that was a factor now or not. Because Magnesium and Vitamin D/Fish Oil are all muscle-relaxant-related maybe that has something to do with it. For those that are talking to their Dr about it (I gave up) it might be worth mentioning :) keep on trying ladies, its a horrible thing to have to go through so the more advice & support we can offer the better xo
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Avatar_f_tn
I wanted to comment to you directly that I also had my pain go away completely during each of my three pregnancies.  It rocked!!!  The pains would go away about 3 or so months into the pregnancy and stayed away until the baby was about one year old.  That said, I exclusively breastfed "on demand" for the first year and my period didn't come back until the baby was about a year old (which is, I believe, the connection).   I have posted four posts on this forum and am due for an update.  Please contact me here directly if you would like to stay in contact about this.  I often see people post and wish they would come back and give updates and stay in touch.

Enjoy your pain free months!!!!  
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Avatar_f_tn
It has apparently been about two years since I have posted.  I would really like to keep in contact with the women on this forum.. I think we can send notes through our profile names.  Please do message me.

I want to post an update.  I am in my late 40's and am probably in perimenopause.  My periods are insanely timely now (never were my whole life until the last few years) and my pain cycle has more or less regulated followed a pattern according to my cycle.

In the beginning, (This began in my early 20s), I had the pain 100% of the time.. every orgasm.  Every.Single.Time.  I have had this pain for about 25 years now.  The pain went away during each of my three pregnancies until the baby was about a year old (probably because that is when my period returned).  After my third child, the pain was sort of hit or miss.  It was not predictable.  About 10 years ago, it started following a pattern.  Until very recently, I would begin the pain 2 weeks before my period started.  It would be at its very worst immediately before period started and then go away about two days into my period.

More recent years, I have a week of crampy pain that comes and goes all the time during that 2 week before time.  The pain is less horrific than after a trigger, but it is constant and doesn't need a trigger.  Sometimes, it is just as bad as the post trigger pain on and off all day for a week.  The week before my period, i would get the horrific pain by triggers (orgasm, bowel movement, strenuous activity).  Even more recently (a year ago) a full bladder/urge to pee joined the list of triggers. Wow.  That sucked. This month, I found myself having milder pains by trigger during my one and only pain free/blood free week.  Not happy.

Every diagnosis anyone here has suggested seems to have "yeah but.."s attached to them.  Some women lose the pains after meno and some start the pains after meno.  It seems there were a few women who still had the pain after a hysterectomy and two that said it went away.

I have a vibrant sex life that is important to me and I am resolute to figure this thing out... even after 24 years of question marks.  My most recent pain doctor appt, I saw a new NP who got excited and referred me to a urogynocologist.  I haven't made the appointment yet.  Probably because.. really? Yet another doctor who will be sure they have all the answers that turn into nothing??  Anyone relate to that?

I have to say that I am finding that the Levsin (HYOSCYAMINE is generic) has been really helpful during my crampy week.  It really does cut down the pain and the pain time (as well as my need for pain killers).  Bentyl works less well.  I have Rx for both.  This is what I do when i know i am during my pain cycle and I am planning to make love:  I take 1 levsin (sublingual) and hydrocodone.  Proceed to enjoy sexy time and have another 2 levsin sitting by bedside at easy reach.  Post orgasm, i put the other two in mouth and try to lie very still.  I have found over the decades that lying still vs moving can be the difference between the pain passing, the pain being less bad, and the pain ripping into me like a tsunami.  Over the last 8 years or so, vomiting from the pain has become part of my experience.

If i can't ride the pain out, i get under a scalding shower (and sometimes vomit repeatedly) until the spasms pass.  My pain lasts around 20-30 minutes long.

I see that some women recently have reported success using supplements and I am eager to try that also.  I totally can see how high doses of magnesium would really help.

Other notes.. my pain is ALWAYS much worse at any given point in my cycle if i have stool inside me.  Aside from a visceral physical therapist who is very cutting edge and intuitive who really targeted the source of my pain quickly, I saw a massage therapist (a very woo MT) who truly believes this originates with the psoas muscle.  I do think there is some credibility to that.. i just don't know the answer.  She showed me a stretch to work on that muscle.

I have an aunt who told me she had this but it went away after seeing an acupuncturist.  My teenaged daughter might possibly be developing this.

I still feel determined to set up a website dedicated to this issue where we can communicate more openly and directly.  Is anyone interested in that?  Years ago, i created a spreadsheet based on pages and pages of responses i read on this forum.  I don't have all the data input, but it came to about 6 pages of 24 x 36 "blueprint" style paper.

I am eager to check back and see if anyone replies to this.  With good communication, I do believe we can work together to find workable solutions.  God knows our doctors and caregivers do not seem urgently motivated..
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Avatar_f_tn
Hi
I have had these symptoms that you all mention except i would get the pain without a trigger a week before my menstruation as well and it was agony. Pain worse than child birth but then without the reward of a baby. Days where the only thing that would help was sitting in the shower. I would sometimes not eat for a few days.

I have had doctors start out so nice and helpful and then after not being to help me they give up. Some would ask what I wanted them to do but I'm the patient I really needed them to fix me. This all started from I started menstruating getting gradually worse. I have been to doctors in the Netherlands, UK and Sweden.

The only thing that really helped was a medication that put me in a menopausal state. Then all problems were gone however i could only be on it for six months but it gave me the strength I needed to get pregnant straight away and once pregnant i did not experience pain or when breasfeeding however after a year the pain came creeping back. I found a great doctor in Sweden who gave the medicine to acheive a temporay menopause again and after that I got pregnant again. Again no pain until I had to stop breastfeeding. I went  for a last round of investigation and a second laparoscapy that did not find anything and then that doctor abandoned me as well. Luckily I went back to my gynacologist and to tell her what happened. She also seemed fustrated with and asked me What I wanted from her which I can tell you was very upsetting. Finally we decided a hysterectomy was all that was left. This without knowing if it would help. I felt that I had my kids and I now needed to be a good mum not one that was sick all the time. So just before Christmas 2011 I had a hysterectomy and since then been pain free! They did not find adenomyosis but countless small fibroids that is rare. I think it must have been these and my uterus is sensitive trying to push them out.

I wish I had a better solution than this and I hope they will find a better solution for you all and in the future. I managed to get my symptoms under control with diet no refined sugar, saturated fat, processed food, wheat, pork and mushrooms. This really helped. I seems also to be worth trying the magnesium and fishoil mentioned here. I tried all kinds of other complementary medicine but it didn't help though it did give me hope and comfort.

This is keeping a long story short. If you have questions let me know. I really want to help those who are i. a similar situation I was because I know how horrible it is.
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Avatar_f_tn
I would love to keep in contact, there is obviously some connection between the pregnancy and being pain free. It just feels good to speak to someone who has gone through the same thing. I have yet to see my Dr. about this but I will very soon. I am so grateful to be able to sleep through the night and go about my day with no pain!
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Avatar_f_tn
I sent you a note to your account here.  If your body is anything like mine, you can enjoy a total pain free experience until your cycle resumes after childbirth.  If you are not totally sold out on exclusive breastfeeding, let me encourage you to consider it.  Round the clock breastfeeding (meaning having night time nursings) will keep your period (and hence the pain) away for around a year.  That is nearly two pain free years.  (Also, breastfeeding rocks :) )  

Let's definitely keep in touch.
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Avatar_f_tn
Hello! I am both relieved and saddened to find so any women with this awful problem and the physicians knowing nothing about it. I have googled this topic many times and this is the first time this conversation has popped up.

I have had pain during orgasm for over 10 years. I have sought out pelvic PT, ultra sounds, and massage to no avail. I have all the same symptoms described, except the need to have a bowel movement during the pain. I am not sure if anyone has had this experience, but I can induce a more mild version of the pain by  massaging the deep muscles between my hipbone and my pubic bone on my left side. In addition, I rarely feel the pain after a second orgasm in the same session or after prolonged foreplay. I am convinced that this is a muscle/ligament issue. There have been many hypothesis posted concerning the muscles/ligaments of the pelvic floor/girdle. I have no idea why the muscles are cramping, but I believe they are. When I massage them, they are stimulated and react. Once they have been "relaxed" via a prior orgasm or through lots of foreplay, they no longer contract painfully. I also find it really interesting that the pain stopped during pregnancy for almost everyone who posted.

As a psychologist, I can tell you that this is NOT in your mind (or mine!) It seems like the right professional could read these posts (almost 500) and come up with an explanation-there is so much information here.

Here are my answers to the 10 questions:

1. Are you underweight, normal weight, overweight or obese?
Currently moderately overweight, though the problem has not varied with my weight

2. How old were you when the pains started?
35

3. How long have you experienced the pain for?
10 years

4. When do you get pain?
Most intensely after orgasm, mildly during sexual arousal, bowel movements, menstrual cramping,

5. Is the pain particularly bad after one of the above?
after orgasm

6. Do you only have the pain after orgasm or after arousal as well?
Mildly during arousal, most intensely after orgasm

7. Do you experience pain all month or just at particular times?
after every orgasm, unless it is a second orgasm in the same session or there has been prolonged foreplay, and more around my period each month

8. Do you know if your mother, grandmother or sisters have the same pains?
No, I don't know

9. Have you been diagnoised with fibroids?
no

10. If you are a mother, did you have the pains before, during and after pregnancy?
Before and after. NOT during,

11. How long does your pain last?
5-15 minutes

12. When the pain passes, will it return if you resume sexual activity?
Sometimes, but often a second orgasm does not cause pain.

13. Describe the pain.
Begins at the top of my left hip bone, cuts diagonally to my pubic bone, radiating down my left leg.

I would very much like to be part on an on-going conversation here and I am going to try and get some researcher friends of mine interested. Thank you for all your honesty.
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Avatar_m_tn
i've just read your post as i have the same thing? Did you find out what was causing it?
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Avatar_f_tn
I had an episode last night. Woke up in middle of the night from an intense orgasm, after that he pain started building right away. Plus I started getting really hot instantly. Someone on here said lay very very still.  I tried  this and it did help. It still was very painful, but I didn't have the need to have several bowel movements like I normally. Plus I didnt hyperventilate like I do with this. I was laying on my back very still for the 25 or so minutes till it passed. NOT fun but I think the laying still thing helps.
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Avatar_f_tn
Ladies

After many years of trying to find out what was wrong I was finally diagnosed with endometrial cancer.  I had a tumor in my uterus and the cramping was being caused by the uterus contracting around it.  What I didn't know was that when you orgasm your uterus contracts but normally releases before there is any pain.  My specialist told me that what was happening with me was that the contraction was holding and not releasing for 15 minutes, almost like the uterus was trying to give birth to the tumor.

A few months ago I had a total hysterectomy including ovaries and tubes and the surgeon said that she could see the damage all the years of this pain had done to my uterus.

Thankfully, now I have finished treatment, I can now enjoy sex and get nothing but pleasure.

Endometrial cancer can only be diagnosed by having a hystroscopy.  I had none of the usual symptoms and am under the avergae age to have this type of cancer which is why the doctors didn't pick up on it,  As horrible as it has been, I am just so relieved to not be living with that pain anymore.

I wish you all the very best in finding your solution.
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Avatar_f_tn
I've also been having these same symptoms for about 10 months. They've become unbearable. I've strayed away from anything sexual but the dreams get me, too. It's bad, but I'm seriously hoping mine is just a hernia since I had an inguinal hernia at 10 weeks old and have had it repaired multiple times. We'll see!
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Avatar_f_tn
Well.. add singing karaoke to my list of pain triggers that send me into spasm then into a public bathroom puking my guts out.  Embarrassed much?  Maybe a little.  Frustrated?  A lot.  

NOT HAPPY.
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Avatar_f_tn
I am glad to hear this has helped for you.  I try to go into a deep relaxed place (as relaxed as you can be when something is ripping into you).  I also make sure my partner doesn't jostle me or move around at all.

I don't necessarily have to have bowel movements when I have spasms, but I do find that the bearing down sensation eases the pain.  If i am able to pass something, then it helps.  I HAVE definitely noticed that if i have some stool inside that has not been passed, my pain is always a lot worse.  I am thinking of taking Miralax during the two weeks of pain I usually  have to try to stay as empty as possible.

My pains seem to have gotten worse in the last few months.  My cycle is getting shorter (I am moving closer toward menopause) and therefore the time I get between pain cycles is less and less.  The last two months, my usual respite pain free week following my period was not totally pain free, but mildly crampy.  I have grown tolerant to the pain meds I am prescribed and they don't work as well as they used to.

As i posted last night, I had an incident where singing a song at karaoke triggered a spasm last night.  The pain (on my severity scale I am used to) was not at the top.. it was difficult to manage, but not horrific, but my mouth started to water which is the sign I get when I am going to start throwing up from pain.   I noticed last night that when i throw up repeatedly from the pain spasms, it is not like typical vomiting.  There is no bile involved.. no volume.  My stomach just pushes out whatever is in there in spasms.  It almost feels like a cat with a hair ball.  It is totally involuntary.  I don't think I could suppress it.  I have tried to delay it, but when i do, my stomach starts doing this thing like a cat with a hair ball and then i really have no choice but to give in.  Does anyone else have this experience?  I have told my doctor that it doesn't feel like I am sick to my stomach but that my stomach is also spasming.. maybe like a chain reaction?  Not that the practitioners really listen to me anymore.  

Why is there not a solution for this problem besides removing my internal sex organs and sending me into hormonal hell?  Why does no doctor on earth know anything about this.. what it is.. how to effectively treat.. how about cure??? it?  

This has begun to run my life.  I have my pain cycle programmed into my phone calendar.  I plan around it.  I have an important meeting tomorrow and I am literally terrified that I might spontaneously spasm in the middle of it and have to go throw up in their bathroom.  How does someone live like this forever?  You think I'd be used to it after two decades.
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Avatar_f_tn
Can you share what dosages of the supplements you are taking that has helped?
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Avatar_m_tn
I've been checking in on this forum ever since I started having symptoms, but have never posted. Here are my answers to the questions.

1. Are you underweight, normal weight, overweight or obese?
Normal weight, 5'6" 125lbs

2. How old were you when the pains started?
20

3. How long have you experienced the pain for?
6 years (lordy, lordy)

4. When do you get pain?
After orgasm, after defecation, during exercise. At least it started off that way. Sometimes during what I call "flare ups," it happens randomly throughout the day, especially bad in the mornings, whenever I'm stressed or have a frightening experience, and then several times throughout the night. I have a heating pad that I use at night that seems to help. Sometimes I can go for weeks at a time without any pain at all. I can also push by my lower right pelvic bone and cause pain.

5. Is the pain particularly bad after one of the above?
It's hard to tell, usually worst after orgasm and exercise.

6. Do you only have the pain after orgasm or after arousal as well?
Both

7. Do you experience pain all month or just at particular times?
It seems to happen randomly, for weeks at a time when it flares up. Then I can go for weeks without it.

8. Do you know if your mother, grandmother or sisters have the same pains?
Not my mom or sister

9. Have you been diagnoised with fibroids?
No.

10. If you are a mother, did you have the pains before, during and after pregnancy?
Not a mother.

11. How long does your pain last?
Usually 30 mins, sometimes up to an hour. It has a definite peak and decline.

12. When the pain passes, will it return if you resume sexual activity?
Not usually.

13. Describe the pain.
Two types of pain: dull and pulsy when it's not so bad, intense and clenching at its worst (weird adjectives, I know.) Definitely lower abdomen, seems to be predominantly on the right side, but both sides will be painful.


I have had: internal ultrasound, external ultrasound, blood work, multiple physical exams both vaginal and anal, and no one seems to know what's happening. I started taking a fancy probiotic and that SEEMS to be helping, but I'm not sure if I'm just in between flare ups or not. It has been quite a long time though (about two months). If they return, I will probably see a GI specialist, as I've got a clean bill of health as far as gynecological issues go. Will try to keep everyone updated.
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Avatar_f_tn
Thanks for posting your experience!  I have this forum bookmarked and have been checking back regularly desperate for any new information.  I hope you are able to find some good answers.

I am getting closer to menopause and have hoped that the pains will start to go away when my period does, but I seem to remember reading posts from years ago where women started getting the pains with menopause.  I need to sit down and re-read the whole forum again.

I am convinced that if we keep in touch and keep telling each other what is working/not working.. what we are trying that is helping... we the sufferers will find an answer since the practitioners seem to be oblivious.  Maybe there will be a diagnosis in our lifetimes.

Nice to meet you :)
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Avatar_f_tn
Oh my god. I ve just found this. All the above is exactly me..... I had never searched it before and have never used a forum. I can't believe so many people are suffering with the same symptoms. I ve had it since about 17 and am now 30 with no children, it's getting worse and affects everything. Why is it that no Dr.s seem to understand it?! I m just going to go and purchase the fish oil and calcium magnesium etc suggested a long way back on this forum....
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Avatar_m_tn
this is crazy, i have always just considered myself a weirdo, but like everyone else am relieved to find i'm not the only uncomfortable one.
im 25, and have felt this since approx. 16. even when aroused i often feel physical pain (a bit hard when you're trying to appear casual).
the symptoms got worse with onset of anxiety. i also have severe period pain, but no endo.
the cramps are so intense i find it nearly impossible to reach an orgasm, however the only time it has ever been relieved is with a proper full blown orgasm (female ejac. to be bltant). at some point i even decided it must be a symptom of sexual repression- realistically it's probably the opposite.
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Avatar_m_tn
magnesium does sound plausible
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Avatar_f_tn
Magnesium, Fish Oil, and Vitamin D3 all help.  But the problem is likely your Psoas muscle, which is deep inside, under the abdominal walls. A qualified Chiropractor or Yoga instructor can help you with this.  I have had this issue; it started at age 57, and it took me 2 years to figure it out. I was already on all the hormones and supplements that Suzanne Somers takes and I am anti-med, so it was important to get to the root cause. The reason a hysterectomy may help, is that it allows more room inside you, but the problem is still the Psoas muscle.
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Avatar_f_tn
I really really hopes this pain goes away with monopause...I don't know how much more of this I can take. It is awful being terrified to go to sleep for fear of having a stupid sex dream with orgasm to be followed by cramps from hell. What the heck is wrong with me?!!!! No one understands and its so frustrating.  :(
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Avatar_f_tn
I check this forum several times a day, every single day hoping to find some answers. The cancer thing is what scares me.
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Avatar_f_tn
I check here regularly as well.  Please feel free to contact me.  I have found some relief from different measures.  I am now convinced this is a pelvic floor dysfunction issue.  Now that I am focused on the PF muscles, I can totally feel what is going on.  There are exercises you can do to stretch them out, and there are spots you can press on during a spasm that makes it lessen or go away.. sometimes.  And other times I am back in the shower under scalding water vomiting.  I feel hopeful.  Between that and seeing a pain specialist for pain relief i have at least some hope, but I can definitely say it has significantly impacted my life.  My entire life is ordered around my pain cycle now.
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Avatar_m_tn
I am so relieved and excited to see this post! I too have had this problem for years and just now found this thread. Throughout the years I've learned to control the pain a little bit with diet. If I avoid restaurant food, sugar, and maybe bread (still trying to figure out if bread is a trigger), and also eat lots of veggies and only small or moderate sized portions, I can go weeks without ANY pain at all. It is very hard for me to eat like this for more than a couple weeks at a time, though.

I've seen two gynecologists, a GI specialist, and a hematologist/oncologist. I've had 6 physical exams which came back normal and the gynos both told me what I was experiencing was normal (it's definitely not). All my blood work came back normal except that I have a slightly high red blood cell count, and he said I shouldn't worry about cancer because I would have been dead by now (not the most helpful advice...). Pelvic and transvaginal ultrasounds came back so perfect the doctor laughed (he had been looking for any excuse to get me an MRI, but insurance still won't cover it). It is extremely frustrating to have all these professionals dismiss my case after just one or two appointments.

Here are my answers to the questions:

1. Are you underweight, normal weight, overweight or obese?
Normal weight, 5'4" 126lbs

2. How old were you when the pains started?
17

3. How long have you experienced the pain for?
6 years

4. When do you get pain?
Normally after orgasm, bowel movement, and about 15 minutes into a workout. If I'm having a particularly bad cycle it will also happen after urination, when I'm nervous (which really stinks when you have to give a speech, etc), and just for no reason at all about every 2 hours.

5. Is the pain particularly bad after one of the above?
Usually worst after orgasm and exercise

6. Do you only have the pain after orgasm or after arousal as well?
Both

7. Do you experience pain all month or just at particular times?
It used to be best right after my period finished and would get progressively worse as my period approached, with no pain at all while I was menstruating. However, lately, if I am very stressed out, in bad shape, and eating poorly it can happen all the time, even an occasional (very mild) episode while I'm on my period.

8. Do you know if your mother, grandmother or sisters have the same pains?
No one in my family has this (I don't have any sisters)

9. Have you been diagnoised with fibroids?
No

10. If you are a mother, did you have the pains before, during and after pregnancy?
Not a mother

11. How long does your pain last?
20-30 minutes

12. When the pain passes, will it return if you resume sexual activity?
Yes, although pain with the second orgasm is usually a lot less intense.

13. Describe the pain.
It feels kind of like getting a charlie-horse in my uterus. I have a very intense but still dull cramping sensation in my lower abdomen that seems to pulse, so the pain comes in little waves. Sometimes my back/kidneys hurt as well. It starts off manageable but builds up to the most intense pain after about 10 minutes, then gradually gets less severe.

I have also noticed that while this happens I suddenly get very hot and sweaty and frequently feel like I will throw up (although I never let myself since I'm emetophobic). I'm often tired and shaky after the episode passes.

I hope the diet info is helpful for some of you! Food is definitely related to my pain, but there has got to be another underlying cause. I hope we can figure this out, but in the mean time I'm going to start taking magnesium!



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Avatar_m_tn
I am pregnant and I got this exactly pain last week. I've had it a couple times before. I woke up to a dream and I was having an orgasm and I got THE WORST PAIN I HAVE EVER FELT IN MY EXISTENCE. I'm convinced that there's NO WAY labor pain can be worst than this. Nothing can be worst than this awful pain. I was alone at home and I passed out. I'm very concerned this can affect the baby. Apparently no doctors know or understand what this is about. When we say WORST PAIN EVER they have that look in their face as if we're really exagerating. It's frustrating. :(
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Avatar_m_tn
I am so glad to have found this thread, but terrified at the same time. This has started happening recently, and I'm so scared to think it might affect me for the rest of my life. My answers:

1. Are you underweight, normal weight, overweight or obese?
Normal weight.

2. How old were you when the pains started?
21

3. How long have you experienced the pain for?
2 years

4. When do you get pain?
After orgasm, around 5-15 minutes afterwards.

5. Is the pain particularly bad after one of the above?
If the orgasm is particularly intense, the pain seems to be worse.

6. Do you only have the pain after orgasm or after arousal as well?
Only after orgasm.

7. Do you experience pain all month or just at particular times?
I'm not reaching orgasm frequently enough to tell (!) but it doesn't seem to be affected by the time of the month.

8. Do you know if your mother, grandmother or sisters have the same pains?
No

9. Have you been diagnoised with fibroids?
No

10. If you are a mother, did you have the pains before, during and after pregnancy?
N/a

11. How long does your pain last?
Around 20 minutes.

12. When the pain passes, will it return if you resume sexual activity?
I haven't tried, I'm normally too exhausted from the pain to think about resuming sexual activity!

13. Describe the pain.
I describe it as being in three stages.
Stage 1: The first few minutes feel like period cramps, and are unpleasant but bearable. I feel like I need to bear down, or empty my bowels.
Stage 2: This is the worst stage, I have no way of dealing with the pain. The pain gradually builds up to an intense cramping, deep inside my uterus, and nothing makes it better - I usually find myself doubled over on the bathroom floor. It makes my lower back ache too. This lasts for about 5-10 minutes.
Stage 3: The pain lessens enough to hobble back to the bedroom. At this point I tend to double over and have my partner press a cool flannel onto my lower back, which helps. This lasts about 10 minutes, after which I feel exhausted and mildly achey (achy).

I'm going to try taking Magnesium, Fish Oil & Vitamin D and will see what happens. Please, please somebody look into this - doctors seem to think I'm lying about it, it's horrible!
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Avatar_f_tn
I'm laying in bed right now dealing with this pain and am shocked to have found this forum. This pain started about 2 years ago. I was masturbating and after orgasm got the horrible cramping pain.

Recently I've been having experiences where I'll have an erotic dream or I'll just wake up in the middle of the night doubled over in horrendous pain. Often I'll go to the bathroom and after a few minutes I'll pass a bowel movement. I find that in so tensed up I can't even urinate for a few minutes because everything in my lower abdomen is likely spasming.

When I noted the connection to bowel movements I was curious if this was a gastro issue, but the pain is clearly more similar to menstrual cramps. It feels like a burning, stabbing cramp that is unbearable.

I also don't know if this is related to periods because my doctor has me on constant birth control with no period. I was worried the birth control could be causing this but after reading many of your stories who is to know.
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Avatar_f_tn
Welcome to the board of fellow sufferers :(

There is a wealth of information if you read through the years' worth of experiences here.  Unfortunately, it isn't as interactive as I wish it was.  I have suffered from this for about 25 years or more.  I can tell you how pregnancy, breastfeeding, perimenopause etc affects this.. but i haven't gone through meno myself yet.

I am convinced this is a disorder connected to the pelvic floor muscles.  Only since I have been paying attention to that has any of this made sense to me.  I have had two laparoscopies, a colonoscopy, and seen more doctors, NPs etc than I care to recall.  

A few years back, someone wrote about finding exercises to release and relax the pelvic floor muscles and found permanent pain relief.  I found that person (years later) by contacting them via this site and they confirmed they are still pain free 4-5 years later.  

I can tell you that I have been finding relief by actively working on my PF muscles... either by sitting on a tennis ball directly pressing on perineum and rolling it around to release the tension, or by attempting to gently loosen muscles internally with my own fingers.  I also do pressure points at various places on my pelvic bone.  I am not trained in anything like this.. I just poke and find a place that seems tender or tight and i gently press for a while.  I have completely stopped doing any kegels at all which is SO counter-intuitive for me.  I had no idea how often i contracted all of my muscles in my pelvic girdle between tightening gluteals, abs or actual kegels all day long.  When I orgasm, I have to concentrate really really hard to not clench up but to stay relaxed and to keep the muscles relaxed.  It is something that has required a lot of concentration for me.  The result is that sometimes, even during my worst pain period (week before period), I can sometimes avoid the spasm completely.   Also, if i feel a spasm coming on, if i do pressure points on various spots on my pelvic or hip bone (this is intuitive), I can lessen or sometimes even halt the spasm in its tracks.  There is something to this.

For what it is worth, I have had this issue spanning so many years, it has seen me through a 30 day raw juice fast, the times I was raw vegan, vegetarian, low carb/high animal protein, heaviest, thinnest, and everything in between.  Currently I eat gluten and wheat free, but that didn't eliminate the pain either.  I do not think this is a GI issue or a GYN issue per se.  I think this is a disorder of the pelvic floor muscles.  Feel free to contact me on this site to keep solution-finding.
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Pig
Just a thought but maybe it's endometriosis??
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Pig
Maybe it's endometriosis?
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Avatar_f_tn
Many of us have had laparoscopic surgeries proving we did NOT have endometriosis.  Some women do.  That is not what is causing this for most of us.  I, myself, have had two separate laparoscopies ten years apart both indicating I did not have that or any adhesions or anything visibly wrong inside.
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Avatar_f_tn
So greatful I found this forum. I'm 50 yrs old and in my 20's I suffered from severe mentrual cramps right before my period. In my 30's and 40's I would always get the cramps but not as intense. As soon as I felt a twinge of pain coming on I would take 4 Ibuprofen and they would subside.

Two Years ago I started getting the severe cramping again but 10x worse. It would start in my pelvic to my low back and my rectum was the worse. It literally felt like someone was ramming a bat up my rectum. But then I was getting them at anytime of the month. On for 4 days off for 2 Days on and off just craziness. My periods started becoming irregular which I'm assuming is perimenopausal. But what also started which never had happened before was the same exact pain after I would have an orgasm or orgasms.

I have seen a Naturopath who gave me a CT Scan and Endoscopy, because I was having constipation and candida going on as well. Those came back fine. Colonoscopy was fine. Then went to GYN and had a transvaginal ultrasound which showed fibroids and ovarian cyst. I had a ca-125 test which was low 15. FSH was normal as well as all blood tests. I told her about the pain after orgasm and she just looked at me perplexed. She told me I could have a hysterectomy for the fibroids if I wanted..uhh? but that this may not help the pain I'm having with my constipation. What? Why is she assuming my pain is from constipation? So I told her that perhaps I should go back to GI Doc and see what they think. I did that and was diagnosed with IBS.
My periods are pretty much are over I stopped bleeding except for very tiny amount. I Didn't have any cramps since April, except after orgasm. This last week I had the cramping for 4 Days. No orgasms I'm avoiding them at this point how sad is that.
So I'm not sure what to do. After reading all these posts. Should I push to see if it's adenomyosis or endo. I'm thinking from what I've researched that it's pelvic floor dysfunction. But I'm afraid about gyno cancer. I don't want to have a hysterectomy for no reason.
By the way I have never had children. Thanks for listening!
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Avatar_m_tn
Just wanted to say, since finding this thread back in August I've been taking Cod Liver Oil capsules and Magnesium tablets once a day - and I've had no more post-orgasm pain or cramps ever since! I really, really would recommend it as a course of action - at least try it, it's worked for me. I've had plenty of orgasms so I've had plenty of chance to test it out and the pain has totally stopped, it's amazing. I used to get the cramps almost every time I had an orgasm. I'm so amazed that something so simple has worked.

From what I can tell, the reason it works is that Cod Liver Oil is great for general muscle strength, and magnesium helps with cramping - it's what you crave when you're on your period to ease the cramps - that's why you crave chocolate on your period, because it contains magnesium! So it makes sense that it would help with post-orgasm cramps too.

I did go on the Pill (Rigevidon) at around the same time, so it could be to do with that as well, but from what I've heard, the Pill hasn't made much difference to most people, or if anything has made the cramping pain worse. So I'm pretty sure it's down to the Cod Liver Oil and Magnesium I've been taking. Whatever it is - I'm not going to stop - it's amazing to enjoy my first pain-free orgasms in years. Thanks so much to whoever suggested it, it really has transformed my life!
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Avatar_m_tn
I've been taking Cod Liver Oil and Magnesium since I found this post in August - and the pain has totally stopped for me too! I used to get really painful cramps almost every time I had an orgasm, but I've had loads of orgasms in the past couple of months and no pain at all since taking Cod Liver Oil and Magnesium. It's completely transformed my sex life.
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Avatar_m_tn
Here are my answers to these questions to help and share

1 Are you underweight, normal weight, overweight or obese? Normal
2 How old were you when the pains started? 26
3 How long have you experienced the pain for? 8years
4 Do you get pain a) after sexual arousal, b) after a bowel movement, c) after urinating, d) after exercise, e) all of the above = a)
5 Is the pain particularly bad after one of the above? A)
6 Do you only have the pain after orgasm or after arousal as well? Yes
7 Do you experience pain all month or just at particular times? Have had pain at all times but mostly when my hormones drop. (I take sythetic hormones because my body dosnt not produce the the correct range)
8 Do you know if your mother, grandmother or sisters have the same pains? my mum had very bad pain during bleeding
9 Have you been diagnoised with fibroids? No
10 If you are a mother, did you have the pains before, during and after pregnancy? Not applicable
11 How long does your pain last? from 10 mins to 2 hours
12 When the pain passes, will it return if you resume sexual activity? Not tested
13 Describe the pain you feel: Like extreme bleeding cramps where i cant do anything but wait it out, sometimes i cant even go take a nurofen tablet which helps, it will ebb and flow where the pain will be very painful of 5 mins then it will pass very quickly but then it starts up again
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