Shayna - dysmenorrhea, tumours etc (long)

[Guest guest]

Hi Shayna -

In answer to your questions below re my daughter (21), on laparoscopy they

looked for endo but couldn't find any typical endo cysts . However found a

benign lesion of " scar tissue " which they can't really identify (don't think it

was endo, so maybe a tumour like yours, however didn't completely rule out

endo..). She has only just started the continuous bc pill so there hasn't been

enough time to see whether the pain will stop. I had to check the chronology and

write it out below .....

June 2005: Dysmenorrhea commenced, starting a week before her period was due,

and continuing two days into the period.

September: Dr put her on the pill (not continuous) to see if this would

control the pain, which was severe. He said she would probably have to wait

another cycle for it to take effect. However the pain then became

incapacitating, occurring intermittently throughout each day, not relieved by

pain killers, and only slightly relieved by hot packs.

There were four visits to Emergency at two different hospitals (one in an

ambulance ). Each time she was sent home after keeping her for up to 12 hours.

Blood tests, pelvic ultrasound, and CT (check by mito doc for small bowel

obstruction) all clear.

October: Gynaecological laparoscopy found " scar tissue " on her uterus which he

excised - said it didn't look like endometriosis . Histopathology didn't know

what it was and gave it an innocuous description (according to gyno). After

that the pain completely went away for a couple of months!

November: Gyno put her back on the pill (non-continuous).

December: Pain started again, only mildly, as it had originally started, a week

before and 2 days into period.

January 2006: Next period pain was full on again, as severe as before only

short-lived, once again related to period (3 days before and 2 days into).

February 2006: Gyno has now put her on continuous bc pill and told her to

maybe just take sugar pills 2 or 3 times a year to allow a period. We are

waiting to see if the pain returns...

I guess from what you and others have said, I was kind of wondering if pain that

appears to be cycle-related, could be just triggered by the hormones going round

at that time, but actually be something else (either mito-related or not) ...

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This is a summary from recent posts of similar experience from the group :

Janet S: Pains around time of period, but on laparoscopy no sign of

endometriosis. Docs concluded longer than normal colon caused spasm triggered

by period hormones. (Pain went away with pregnancy.)

: Pointed out endometriosis does not always show up on ultrasound and

suggested laparoscopy.

Anne- Marie: Had endometriosis wrapped around bladder and bowels. Recommended

pelvic scan and laparoscopy.

: Had uterine fibroids and endometriosis.

: Had endometriosis since 20, also ovarian cysts and fibroids - can't

take pain meds so uses heat. Depo Provera helps control endo. Has had several

laparoscopies to remove endo cysts. None of ultrasounds showed cysts or endo.

Lynda: Excruciating period pain during ovulation after csection, eventually

discovered endo spread in scar tissue from surgery all the way to rectum. Pain

eventually ceased with hysterectomy.

Janet CA: Pain and bleeding 20 days out of 30, till she had a hysterectomy, put

down to fibroids.

2002: Endo + something in uterine muscle found at hysterectomy ???

Shayna: Lifelong dysmenorrhea exacerbated in late 90's by two benign pelvic

tumours (probably also infected) also causing temperature which went away after

they were removed at laparoscopy. No endometriosis seen at that time. Since

then continual dose BC which greatly reduced dysmenorrhea, until recently when

it has again become much worse ?another tumour?. (Awaiting ultrasound)

(Trusting I stated this all correctly - it's just interesting to compare, in

case there's a common thread )

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pamela

From: shaynapearl

To:

Sent: Monday, February 13, 2006 4:55 AM

Subject: Shayna - Re: Re: Dr App't--long

Hi Pamela,

Do I understand correctly that her pain stopped after the lesion was

removed and then started again despite the fact that she is on

continuing dose BC? Hmmm.....if so, that was a very short respite.

What kind of lesion was it? I'm wondering what you mean by " they don't

think it's endo. " Did they look for endo when they did her surgery?

I'm no medical expertise, but a good friend is a medical professional

who also has endo herself. My understanding from her, which I could be

mis-remembering to some extent, is that ifthey went in, they should

have been able to look for endo and either diagnosis it or rule it out

fairly definitively (although I think it's possible that if they don't

look at enough spots, they could miss it). Despite my lack of medical

expertise, I think this is an important question because one renowned

endo specialist told my friend that continuous BC doesn't really help

much with endo pain, though many gyns think it does. He said that if

it helps, it's probably plain-old dysmenorrhea. Anyway, it seems like

being sure about endo is important. My friend's opinion is that few

gyns really know how to deal with it. So it's also important to make

sure the doctor is good. She's gotten references from medical

conferences and the Endometriosis Association, but I don't know if

they reach into Australia. Endo is another area of great medical

questions and controversy.

As for my situation, I have progressed to the point where I'm having

cramps even between periods. The doctor found a raging vaginal

bacterial infection. She said that it was possible that it could have

migrated into the uterus, in which case the cramping could be caused

by the uterus's futile attempts to expel an infected lining. But so

far, the antibiotics have not completely relieved the cramps. (I might

just need a few more days.) Also, I have gained 10 pounds in a very

short period of time for no obvious reason; that's another reason to

get the ultrasound. It's scheduled for February 22. When I get the

results, I'll let you know in case it has any relevance to your

daughter's situation.

Hope my reply wasn't too long-winded!

Best,

Shayna

>

> >,

> >Thanks for checking up on the name of it. I haven't had any

> >ultrasounds recently but I suspect I'll be getting one in February

> >after my gyn appt. Last time I had an ultrasound was 2000. It

showed

> >nothing. But, believing that I had endo, they did diagnostic

surgery.

> > No endo was found, but I had two benign pelvic tumors stuck in a

> >tight place. Perhaps they were infected, too, because I had had

a low

> >grade fever for months that went away as soon as the tumors were

removed.

> >

> >The tumors and dysmenorrhea were separate, but exacerbating, issues I

> >believe. I've had dysmenorrhea since my first period (by then I had

> >neuromuscular symptoms for 4 years). I didn't have tumors then. But

> >the dysmenorrhea became much more extreme in the late '90's due

to the

> >tumors that developed then.

> >

> >Since then, I've been on continual dose BC (so I only get my period 4

> >times/year). This greatly reduced the cramps so that they were

> >bearable. However, in the last year, the cramps have radically

> >increased--which I've heard is not supposed to happen on continuous

> >dose. Also, I get a lot more intermittent spotting. So I see

the gyn

> >again in early February. It's possible I have another tumor; but

then

> >again, there are many other possibilities, too, which is why I'm

> >curious what your muscle thing was.

> >

> >Another factor is that I recently saw a list of meds that people with

> >mito shouldn't take--and the hormones (BC) I'm on was on that list.

> >When I see my neuro in a couple of weeks I'll ask about that. If I

> >have to go off the BC, I don't know what we'll do about the

dysmenorrhea.

> >

> >Thank you for asking about the biopsy. I will get the results on

> >January 26. I'm nervous about it!!

> >

> >Take care,

> >Shayna