I ask here because a 40+ year old asking on facebook is just too weird, and I can't really ask anyone I know either.

I have constant.. CONSTANT lower abdominal cramping.. non relenting and it makes me feel sick.  Yes I've seen docs, plenty of docs about it.  My question for folks here though... (and I'm not per say seeking medical advice, just any advice)..

The only found I found that helps is Pamprin.  So far I've tried Midol, Excedrin, Naproxen, Flexeril.  None of those do anything at all. Pamprin makes me sleepy but at least I get some relief for a couple hours. I also tried heating pads, and cooking my innards works for a while but after 1/2 an hour I'm just hot, and miserable again.

I have no clue why.   All my nursing education doesn't exactly help in the realms of this either.  I'm kinda desperate for help at this point.  What did you folks that  have to 'deal' with this do?  Please.. I need any help I can get.  This has been going on for years at this point and its increasingly getting worse.  I just hope I don't become septic. I have a whole host of crap & issues going on in that region.

Codeine was always good for cramping in my experience, would not advise long term use though

Have you had blood tests? Liver function, etc.

Quote from: AnonyMs on May 05, 2018, 04:35:26 PM
Have you had blood tests? Liver function, etc.

Liver is fine, kidney fine (all within normal limits on the CMP/CBC).   In fact everything is suspiciously  'normal' except now I'm more or less officially in menopause. Was perimenopausal estrogen levels forever.  I also have no readable testosterone.

I had my blood sent off via genetics lab for testing too.  That'll take at least 2-3 months for the results to come back (The wait list to see him was 8 months as it was..ugh).

Oddly now that I'm back on the estrogen patch and progesterone, the cramping has diminished to the point its worse at night, and almost nonexistent in the day. (I was off it over a month for a baseline reading of my current hormone load as well as AMH and Inhibin B.. all at menopausal levels.) My only rationale for that has to be the progesterone I take at night is diminishing by the time its time to take it again.  Other than that, I have no clue what's going on.

Hard to say what it may be. I don't take progesterone so I really have no comparison. It could be medication related but not being a doctor I can't really say. I get terrible cramping if I miss my Metamucil dosage but that is due to nerve damage in the bowels.
You have seen doctors, have they checked for Irritable Bowel Syndrome or colitis or any of that.

Quote from: Donna on May 06, 2018, 01:40:38 PM
Hard to say what it may be. I don't take progesterone so I really have no comparison. It could be medication related but not being a doctor I can't really say. I get terrible cramping if I miss my Metamucil dosage but that is due to nerve damage in the bowels.
You have seen doctors, have they checked for Irritable Bowel Syndrome or colitis or any of that.

Just had a colonoscopy done too, if nothing else to rule out UC or IBS.  My bowels are clean as a whistle and healthy as a ... well pair of bowels can be.  My bladder is also fine.  It has more to do with multiple anomalies that seem to change depending on who's viewing it most likely.  Frankly at this point if its not my internal organ they can't id, then its my suspicion it might be scar tissue or hormonally fed endometriosis (its possible even without a uterus or a poorly formed one aka mullerian remnant.. another diagnosis I've been given). 

The irritating thing is I asked the reproductive endocrinologist this, and he just kind of let it roll off him like water off a ducks back.  He wants to see me physically next (its mostly been via blood tests / correspondence, I see him in 2 weeks).   Not sure what a physical examination will reveal though.

Best of luck and hope they get to the bottom of it. It took from 1984 to 1992 for
The doctors to Identify my bladder and bowel issues and by that time way too
much damage had been done internally. Those issue still plaque we to this day and have caused way more along the way.
Hopefully you don't end up in that kind of space.

Quote from: Donna on May 06, 2018, 02:25:15 PM
Best of luck and hope they get to the bottom of it. It took from 1984 to 1992 for
The doctors to Identify my bladder and bowel issues and by that time way too
much damage had been done internally. Those issue still plaque we to this day and have caused way more along the way.
Hopefully you don't end up in that kind of space.

Thank you, and that is exactly what I am fearful of to be honest.  All theories and 'might be' aside.. your body isn't meant to hurt. Pain is natures way of saying something isn't working right.  I do not want it to be some insidious form of cancer or body part failing for sure.

Quote from: Doreen on May 06, 2018, 01:20:18 PM
Oddly now that I'm back on the estrogen patch and progesterone, the cramping has diminished to the point its worse at night, and almost nonexistent in the day. (I was off it over a month for a baseline reading of my current hormone load as well as AMH and Inhibin B.. all at menopausal levels.) My only rationale for that has to be the progesterone I take at night is diminishing by the time its time to take it again.  Other than that, I have no clue what's going on.

Do you know your estrogen blood levels? Some doctors have odd idea's about proper levels and go really low. Its worth double checking yourself.

I sometimes use bioidentical progesterone, and my endo told me to take it twice a day as the half life is very short. If you're using synthetic (medroxyprogesterone acetate) one of the side effects is cramps (and serious depression).

Hello Doreen,

first of all, I am sorry to hear what you are going through.

I came to these forums because i am having problems with abdominal pain and cramps as well since years, and i really don´ t know what else i can try so i am looking for any kind of information i can get.

I am not sure, but i think my symptoms are kind of similar. I am having pelvic cramps not all the time, but nearly all the time. I am having major gastrointestinal problems but nothing showed up in multiple colonoscopies and MRIs. My bladder and every other internal organ is also okay. All blood work results and every other test they tried came back normal.
I had SRS 5 years ago, and after that it slowly got worse to the point that now i have to fight all the time to get up and go to work, and it takes a lot of energy to just lead a kind of normal life. The odd thing is that i get worse cramps after every orgasm. My lower pelvic area gets really numb when i have an orgasm, and the next day i am having worse cramps and worse pain in that area for 2-3 days. Every time.


The first thing i want to ask, because it hit me when i read this:

QuoteFrankly at this point if its not my internal organ they can't id, then its my suspicion it might be scar tissue or hormonally fed endometriosis (its possible even without a uterus or a poorly formed one aka mullerian remnant.. another diagnosis I've been given).   

Is that possible? I was suspecting the same as the cause for my abdominal cramps and pain (scar tissue or endometriosis), but i always feared it would be too far fetched . Or might seem too far fetched for the doctors to go after that lead.
I don´ t have a uterus or mullerian remnants. But i read about endometriosis which could develop without endometrial tissue present before (like, even in cis-men). I just don´ t know enough about it and couldn´ t find any real information.
I am really not sure which doctor to turn to.

What would be the right course of action to get that checked out? Did the doctors check out if you had endometriosis or scar tissue? if yes, what kind of tests do they do to find endometriosis or internal scar tissue?

As of now, every doctor i´ ve seen seemed clueless in the end and couldn´ t help me. I am really hoping i can turn this thing around, and maybe if you´ re interested, i would really want to get in touch with you. Maybe we can help each other (though i don´ t have much help to offer at the moment... as i said, I´m pretty clueless and desperate) 

I hope to hear from you soon. Good luck and hang in there. Constant pain can really bring you down. it sucks 

Hello Babara_en, welcome to Susan's!

I am sorry to hear you are also having abdominal pain and cramps.  I don't have any specific suggestions (my GCS/SRS was only 4 months ago) and you have already discussed this with several physicians. 

Since this was your first post I'll add information to help with navigation and site guidelines.

Site Terms of Service & Rules to Live By	Standard Terms & Definitions	Post Ranks (including when you can upload an avatar)
Reputation rules	Cautionary Note	Photo, avatars, & signature images policy

When you get a chance it would be great if you introduce yourself in the Introductions Forum.

Babara_en, really great to see you here!

Kendra

Quote from: Babara_en on June 04, 2018, 03:43:24 AM
Hello Doreen,

first of all, I am sorry to hear what you are going through.

I came to these forums because i am having problems with abdominal pain and cramps as well since years, and i really don´ t know what else i can try so i am looking for any kind of information i can get.

I am not sure, but i think my symptoms are kind of similar. I am having pelvic cramps not all the time, but nearly all the time. I am having major gastrointestinal problems but nothing showed up in multiple colonoscopies and MRIs. My bladder and every other internal organ is also okay. All blood work results and every other test they tried came back normal.
I had SRS 5 years ago, and after that it slowly got worse to the point that now i have to fight all the time to get up and go to work, and it takes a lot of energy to just lead a kind of normal life. The odd thing is that i get worse cramps after every orgasm. My lower pelvic area gets really numb when i have an orgasm, and the next day i am having worse cramps and worse pain in that area for 2-3 days. Every time.


The first thing i want to ask, because it hit me when i read this:
Is that possible? I was suspecting the same as the cause for my abdominal cramps and pain (scar tissue or endometriosis), but i always feared it would be too far fetched . Or might seem too far fetched for the doctors to go after that lead.
I don´ t have a uterus or mullerian remnants. But i read about endometriosis which could develop without endometrial tissue present before (like, even in cis-men). I just don´ t know enough about it and couldn´ t find any real information.
I am really not sure which doctor to turn to.

What would be the right course of action to get that checked out? Did the doctors check out if you had endometriosis or scar tissue? if yes, what kind of tests do they do to find endometriosis or internal scar tissue?

As of now, every doctor i´ ve seen seemed clueless in the end and couldn´ t help me. I am really hoping i can turn this thing around, and maybe if you´ re interested, i would really want to get in touch with you. Maybe we can help each other (though i don´ t have much help to offer at the moment... as i said, I´m pretty clueless and desperate) 

I hope to hear from you soon. Good luck and hang in there. Constant pain can really bring you down. it sucks 

Finally got my net back, so sorry for the long wait in response.  I'd honestly just say get a MRI and ultrasound, but that's really what started my nightmare of radically differing diagnosis in the first place.

"When in doubt check it out".  My pelvic cramping IS daily now, though its not all the time.  When it happens though...UGH.. and it actually occurs about 15 minutes after I exercise is more noticeable.  Exercise will actually diminish it to the point it nearly vanishes altogether, but its back waiting for me shortly after..

When I was off HRT, it continued.  When I went back on after a month hiatus, the cramps actually vanished entirely 4 days, then back like clockwork.  Taking progesterone at night will knock them out all night usually.  This is why I am 100% convinced its hormonally related.. something multiple docs have actually agreed on. (About the only thing really).  Stopping HRT isn't the answer though, because they were there on or off it.

Its a mess... its a nightmare.. and frankly its outdoing my migraines in pain level & discomfort.  And it feels for all intents & purposed LIKE cramping.. like an organ being twisted violently back & forth, ripping something internally.  And the organ exists if docs simply LOOK at the pictures.  And no it isn't some mysterious remnant from my surgery either.  Its a very real, complex, hollow organ, shape of a uterus, location of a uterus... And incredibly frustrating.

Scar tissue they did visualize some around the umbilicus (from no surgery I'm aware of), and it was very loose adhesions... and not the location of my pain.  They actually stated my endometrium was of normal size & thickness on the ultrasound.   GRRRRR.  No endometriosis noted, though they did visualize a tiny fibroid internally in my .... uterus.

Hello Doreen,

it´s good to hear from you again. I am very sorry to hear that you´ re cramps got worse.

First of all i have to say i am not a native speaker when it comes to english, so i have some maybe really *dumb* questions about your diagnosis and examinations. I am not sure if i got all of it right.
If anything is too personal or you just don´ t wanna talk about - just tell me. And don´t answer stuff you don´ t wanna.
So...
I think i got from reading that unlike me, you do have an actual uterus? Is that from the mullerian remnants you wrote earlier about? I am not super well educated on mullerian ducts and development of internal sex organs.
I personally had SRS some years ago, i always attributed my pain to something that maybe happened there. May i ask if you had any surgery like that?
Well, that´ s just for helping me understand what i am reading better.

About what you just wrote: It does seem like the doctors at least found something. Does this help you? Is there any possibility that they can treat you know that you know you have adhesions, a uterine fibroid and some scar tissue in your abdomen? Or do they say it is not related to your cramps? Because everything that might help should be worth a shot, shouldn´ t it?
I hope you get the right treatment for your pain soon.

regards.

Quote from: Babara_en on June 10, 2018, 05:02:39 AM
Hello Doreen,

it´s good to hear from you again. I am very sorry to hear that you´ re cramps got worse.

First of all i have to say i am not a native speaker when it comes to english, so i have some maybe really *dumb* questions about your diagnosis and examinations. I am not sure if i got all of it right.
If anything is too personal or you just don´ t wanna talk about - just tell me. And don´t answer stuff you don´ t wanna.
So...
I think i got from reading that unlike me, you do have an actual uterus? Is that from the mullerian remnants you wrote earlier about? I am not super well educated on mullerian ducts and development of internal sex organs.
I personally had SRS some years ago, i always attributed my pain to something that maybe happened there. May i ask if you had any surgery like that?
Well, that´ s just for helping me understand what i am reading better.

About what you just wrote: It does seem like the doctors at least found something. Does this help you? Is there any possibility that they can treat you know that you know you have adhesions, a uterine fibroid and some scar tissue in your abdomen? Or do they say it is not related to your cramps? Because everything that might help should be worth a shot, shouldn´ t it?
I hope you get the right treatment for your pain soon.

regards.

I had GCS ... yall call it SRS, but really they reconstructed what i had that wasn't fully male.  They call it mixed gonadal dysgenesis, but I just knew they were messed up back then.  Went to Thailand in 2001 with Dr. Kunaporn.

I always had monthly pain, but dismissed it as constipation.. took prune juice and walaa 3 days it went away.  Of course last 4 years its now permanent, so the concerns escalated dramatically.  At first I had an ultrasound done said I had a uterus but difficult to visualize ovaries.  I saw it... it was a hollow organ that the tech found rather quickly.  Wasn't a fibroid. 

After that to clarify I had a MRI... on the MRI they stated 'based on patients genetic profile', they stated it was a 'fleshy protuberance in the expected region of the vagina'.  IE it kinda looks like a uterus, but they weren't certain.  Frankly I had 5 radiologists scratching their head (local ones) at this point.

Then I had a CT scan... said everything was 'normal' for a woman my age except constipation.

Then I had a pelvic cystoscopy.  And here is where things got really messed up. The ob/gyn that did it stated there was no uterus, no ovaries, no solid tissues... then no prostate, no seminal vesicles, nothing.  Believe me those are not taken out in SRS... morbidity & mortality rates escalate.

Talked to a repro endo at Duke, he latched onto the laparoscopy, ruled out streak gonads (a condition in Swyers), and basically stated no more investigations needed.  He did order ANOTHER ct, this time focusing on the abdomen.  I specifically asked him if they'd look at the organs, he said they would.   We'll see.. watch this one turn up even stranger than all the rest.

I am frustrated... obviously so.  And Every single doctor agrees that HRT is affecting the cramping... yet not sure how.  If I stop taking it though it continues.  If I take progesterone, it settles down for about 9-12 hours.

To answer your question...mullerian structures are female internal organs.. if they are 'intact' like the 1st endo said, then you have a uterus, ovaries, Fallopian tubes, cervix.  Oh, I also have plenty of vaginal lubrication from glands inside the vagina.. most especially after orgasm.  Its not pee. Noone has a clue why.  Pretty sure that's another 'unique' thing about me that has no answer presently. .. unless obviously they're the female glands that exist there. No, not making this stuff up.  No, I didn't have colon resegmentation. 

Okay, now I understand.
That must be terible. I hope you get through this.

QuoteNo, not making this stuff up.

Of course not. I hope nobody thinks that.


Best wishes