Re: Endo pain after orgasm in my sleep!-possible solution
From: Ann (anonymous@obgyn.net)
Wed Dec 31 05:04:21 2008
I have also had a similar experience - I'm 28 years old, diagnosed with
endometriosis 6 years ago. I had cysts removed shortly after diagnosis
and was on Depot Provera since then until recently. I began to have the
intense cramping pain after orgasm about two years ago. Initially it
was about 50% of the time. As time passed the pain occured after every
orgasm and lasted between 20-40 minutes. I would describe the pain as
unbearable. I never vomitted, but I would always have a bowel movement.
I also always felt very hot and sometimes resorted to lying on the tiled
floors to try and cool down. Occasionally, I would also wake up in the
middle of the night with this pain.
I eventually went to speak to my gynaecologist. She had never come
across this problem. One possible theory that she had, was that as a
result of being on Depot for so long, the walls of my uterus had become
very thin and this was leading to the pain when the muscles contracted
during orgasm. I came off the Depot (which I was quite nervous about,
because apart from the 'orgasm pain', I had been pain free since my
operation) and I took Estrofem (estrogen) for two months. I then
started on an oral contraceptive (Melodene) and have been taking that
for 6 months. I only take a break between every two cycles. I am happy
to report that close to the end of the two month Estrofem course, I
STOPPED EXPERIENCING THIS PAIN COMPLETELY and have not had it since. Not
once. Not even a hint. My doctor is still not sure exactly what the
problem was- or whether it was solved by coming off the Depot alone, or
taking the Estrofem alone, or a combination of both. But it is solved
for the moment and I am greatly relieved.
I trawled the internet to try and find some sort of information about
this but could only find the occasional post on a forum reporting the
pain, but no solution. I really hope that what worked for me, helps
some other people that are having this problem.
At Fri, 26 Dec 2008, anonymous wrote:
>
>I have never heard of anyone else having my very symptoms. Like each of
>you, my doctors were all stymied. I began having intense pain after
>EVERY orgasm around the age of 25. The pain was so intense it was
>unbearable. I found that if I lay very very still and didn't move a
>muscle and breathed deeply, the spasm would be less intense, but if I
>gave into the urge to get up and walk around to try to escape the pain,
>it was worse. The pain did FEEL also connected to bowels.
>
>I had a laparoscopy showing I did NOT have endom. but had two fibroids
>on my outer uterus. One was removed, but one remained as it was
>attached also to a fallopian tube. The pain was not changed by this.
>
>When I began having children, I found that the pain went away for most
>of my pregnancy. After orgasm, instead of pain, my uterus just blew up
>like a balloon and got very hard (just as in labor). After birth, the
>pain stayed away for a full year and then returned, but not as intense.
>I had one C section and two fully natural vaginal births.
>
>After my last child, the pain began returning at different times, but
>intermittently. Sometimes during intercourse.. sometimes during
>intense physical activity.. but it wasn't consistant. I had a second
>laparoscopy 11 years after the first with a specialist (colorectal...
>the name escapes me..) present along with my OB GYN. Still no endo., no
>adhesions connecting anything. There was nothing that showed up in my
>lap. That was 3 years ago.
>
>Since then, it has developed a pattern. The pains begin about 1.5 weeks
>before the onset of my period. My cycle ranges from 4-5 weeks lately
>although I was very irregular throughout my life. The pains begin
>manageable but progress through the following week and a half to
>unbearable. I try to avoid orgasm during the second half of this period
>of time.
>
>I usually have an urge to pass a bowel movement during the pain spasm,
>and sometimes this makes it go away faster and sometimes not. It is
>still more manageable if I lay very still and breath deeply. My spasm
>used to last around 20 minutes from beginning to peak to normal. After
>the pain goes away I get an almost euphoric feeling. Maybe it is just
>relief.
>
>Lately, at the very end of my "pain cycle" just before my period begins,
>if I do have an orgasm, the spasm ultimately has led to vomiting. I
>don't feel sick to my stomach, but I can feel it begin to contract and
>spasm and then I begin vomiting. This has happened about four times in
>the last year.
>
>For a brief time I got a prescription for codeine and I would CHEW it
>when I felt the spasm coming on. At this point in my life, things other
>than orgasms can bring on the pain spasm. A bowel movement, strenuous
>activity like working out or walking up a flight of stairs, dancing,
>etc. Sometimes it comes on spontaneously with no explanation. I am
>currently in my early 40's
>
>I can't tell you what a relief it is to read of others who have my
>bizarre symptoms. No doctor understands it. It is frustrating to need
>to explain to partners or friends. It is difficult to ask a partner to
>not touch me or talk to me for 15 minutes following my orgasm (during
>that week and a half) until my "cramps" go away.
>
>I am eager to hear more from others.
>
>At Thu, 16 Oct 2008, anonymous wrote:
>>
>>At Tue, 20 Mar 2007, anonymous wrote:
>>>
>>>I note these are quite old messages but I wanted to also mention that I
>>>have a problem with this. I had left sided pain for many years with
>>>intense contraction like pain following orgasms and no other symptoms
>>>and was diagnosed with irritable bowel initially. I eventually had a
>>>laparoscopy and was diagnosed with endometriosis which was treated by
>>>laser surgery which alleviated my symptoms for a year but they have
>>>since returned. the pain I experience after orgasm has also occured
>>>during my sleep and awoken me. the pain is intense and I usually pass a
>>>bowel motion then the pain subsides over about 30mins or so. The
>>>doctors didnt think that it could be related to my endo due to passing
>>>bowel motions but the laser treatment for endo did make it go away for a
>>>while. It is helpful to see I am not the only one with this problem.
>>>
>>>At Fri, 15 Oct 2004, anonymous wrote:
>>>>
>>>>This has happened to me once, and the doctor could give me no
>>>>explanation for it. The experience I had was particularly scary and it
>>>>happened not after intercourse but after masturbation. A minute or two
>>>>afterwards I started to get intense pelvic pain which increased until I
>>>>couldn't stand up and was crying with it. I was really scared and ran
>>>>to get my mother - then I felt very sick. I made it to the bathroom and
>>>>was physically sick as well, and had a bowel movement. By this time I
>>>>was experiencing intense pains - I can't think contractions could be
>>>>worse! My body went into shock from the pain, my lips turned white and I
>>>>went freezing cold and I felt woozy and passed out on the floor for
>>>>several minutes. When I came round, I made it to the bathroom and the
>>>>pain subsided, if you can call it that, into intense contractions which
>>>>were coming regularly every minute or two as if I was in advanced
>>>>labour. They were so bad I was doubled over and screaming in pain. It
>>>>did almost seem like something had triggered false labour pains - I
>>>>could feel the contractions in my uterus. These gradually, over the
>>>>course of an hour or two subsided - I went to the doctor when able but
>>>>she could not tell me what was wrong. My period started later the same
>>>>day. Nobody has ever been able to explain this and I wish they could
>>>>becasue it was very frightening. I am glad it has only happened once to
>>>>me.
>>>>I did wonder why it happened - it happened after the end of a
>>>>relationship with a man during which I had experienced other
>>>>gynaecological problems - thrush, cystitis, and also irritation to his
>>>>semen like an allergy - at one point I seemed to get mucus like discarge
>>>>from my cervix but this was ealier than the pelvic pain episode. And
>>>>yes, we did both get ourselves checked out at the sexual health clinic,
>>>>and we didn't have anything wrong or any infection. I did wonder if his
>>>>semen had caused problems in my uterus as well as the external
>>>>irritation and redness I experienced when I has skin contact with it. It
>>>>even happened when it got on my fingers or thighs, I would get red
>>>>patches! I am fine now a couple of years later with another man. Do you
>>>>think whatever caused this wil have gone or should I see a gyno?
>>>>
>>>>At Sat, 1 Mar 2003, anonymous wrote:
>>>>>
>>>>>Yes, this happened to me too. I have even thrown up from the pain. I
>>>>>had fibroids and have endo. You probably should have your doctor do a
>>>>>laparscopy to check for endo. Talk to your doctor, he/she will
>>>>>understand.
>>>>>
>>>>>At Sat, 1 Mar 2003, anonymous wrote:
>>>>>>
>>>>>>This person wrote awhile ago, but if anyone out there can relate to
>>>>>>this, please write back. I experience this. I also have pain all
>>>>>>through the month after orgasm. Awake, sleeping and it is excruciating
>>>>>>from anywhere from 20-40 minutes. I really need help- I have tried to
>>>>>>search the internet- no luck except for this. I have not been tested
>>>>>>for endo. I have normal periods, well, severe pms and pain up to 2
>>>>>>weeks before, and get very bloated and gaseous. I am 28 yrs old and
>>>>>>have had this orgasm pain for years. I find it pretty difficult to talk
>>>>>>to doctors about it. They seem to say it's about uncomfortable sexual
>>>>>>positions, or back ache, and then they thought it was irritable bowel. I
>>>>>>am at my wits end. It happend while I'm sleeping! Waking up to intense
>>>>>>pain-- the pain always makes me squirm because it's so intense I can't
>>>>>>sit still- I end up on the foor usually practically crying. It has
>>>>>>gotten so severe I would bet childbirth isn't much more painful. The
>>>>>>pain is exhausting. After the pain, I am completely fine. It's nuts. A
>>>>>>dr. wanted to put me on the pill and i said no. I have small fibroids
>>>>>>--- so small, they only found them when I asked for an ultrsound. They
>>>>>>said to small to cause this pain.
>>>>>>I think I need to go for a laproscopy and find out. The thing is, I
>>>>>>feel like this is the only symptom I have that is truly endo-like, but I
>>>>>>guess there aren't always symptoms.
>>>>>>Does anyone out there think this orgasm pain can be endo?
>>>>>>I don't know what else it can be. I am a healthy 28 year old. Do you
>>>>>>think I should get the laproscopy?
>>>>>>Please write if you can tell me any shared experiences. Thank you.
>>>>>>
>>>>>>At Sun, 6 May 2001, anonymous wrote:
>>>>>>>
>>>>>>>I'm writing for the first time hoping someone else out there may have
>>>>>>>experienced something similar. My pain with endo in excruciating after
>>>>>>>orgasm. Since the onset of this disease 9 years ago I have had orgasms
>>>>>>>in my sleep resulting in severe pain and a sleepless night. The orgasms
>>>>>>>always occur around day 23 of my cycle. Recently we've been trying to
>>>>>>>concieve and every time I feel the egg has implanted, I get this orgasm
>>>>>>>in my sleep followed by severe pain and the next few days my pregnancy
>>>>>>>symptoms are gone, and I get my period. I've had surgery, Lupron, and
>>>>>>>the clomid, IUI ordeal. I'm sure we concieved this month but I had an
>>>>>>>orgasm in my sleep two nights ago. I'll have to wait and see. So
>>>>>>>frustrating and sooo weird. It's like this disease doesn't want me to
>>>>>>>get pregnant, like it has a mind of its own. Creepy. Any suggestions
>>>>>>>anyone?
--
Ann
![[ endo@obgyn.net ]](../../images/endo_at_obgyn.gif)