Re: {SPAMFILTER} need some thoughts re severe pelvic pain

[Guest guest]

Hi Pam,

I'm Lynda, wife and caretaker of Dewayne (he has mito). I do not have mito,

but have been diagnosed with sarcoidosis and now my rheumy just says I have

autoimmune, connective tissue disorders....Anyway, I had a history of painful

periods, but after my csection, they became unbearable. Six months after my

son's birth, I started having bad digestive problems as well....Dr. thought I

had colon cancer.....did all the testing....scopes, etc....and found nothing.

Tried to get pregnant again for 2 more years....finally surgery found that scar

tissue and endometreosis had grown from my surgery scar to my rectum. That took

care of the problem for a few years and then the pain hit during ovulation and

my period....so I had one good week out of 4....It was debilitating pain too.

They could never find it with any normal testing...ultrasounds, scans...This may

not fit your daughter at all, but thought I'd throw in my experience. I mean

who would have thought my bowels and female organs would have any connection

I did have a hysterectomy 2 yrs ago and that has solved the pain. I still have

a small problem with some growing scar tissue but the hormones aren't around to

feed it. Sorry if I went on and on.

Best of luck, Lynda R.

{SPAMFILTER} need some thoughts re severe pelvic pain

Hi oh wise ones - I am fairly new and wrote recently about my daughter Penny

who is 21, and had been having numb or giving way legs. We are attempting to

get her tested as I have MELAS but she has to wait in the queue. Over the last

few months she has also had what appeared to be dysmenorrhea (severe period

pain) several days prior to and 2 days into her period. Eventually as it was

getting worse her doctor suggested she go on the pill to control this, which was

about three weeks ago. This was just before her period was due therefore would

not have effect till her next cycle. Nevertheless her pain is now daily and so

severe she spends most of her time in bed crying and groaning and this has now

been going on for 25 days almost non stop (occasionally she has a reprieve for

an hour or two but then it starts again). It seems to be made worse by movement

(eg when she has to get up to go to the bathroom) and is to some extent relieved

by heat packs. She can't take anti-inflammatories due to another condition

(hereditary haemorrhagic telangiectasia) which will cause her nose to bleed

heavily, so there is nothing to relieve the pain as Panadeine Forte has not done

anything, nor Baclofen (muscle relaxant) or Buscopan (antispasmodic) to help.

Because this pain has been going on so long doctors are concerned but today

she had a clear pelvic ultrasound and blood tests that gynos normally do (pap

smear not back yet). Gyno said next step is a kidney scan.

I was wondering if anyone can shed some light on this perhaps from personal

experience - does this sound like a mito problem? Many thanks, in advance.

Pamela