Dysmenorrhea, endo etc - still long

[Guest guest]

Thank you Shayna that is so nice of you to go to that trouble. I think the gyno

Penny has seen is supposed to be good, I have heard. Also the medical

fraternity here do have access to all the latest global scientific developments

and info, but as you mentioned previously they all seem to be perplexed by

endometriosis anyway. I have taken note of what your friend said ie " 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 " and waiting to see

what happens over the next month, when she is due back to see the gyno. At the

moment, when she would normally have her period (but now on continuous bc

however her body wouldn't know that anyway as she hasn't got to the sugar pills

yet) she has been experiencing the severe pain again over the last few days. I

feel helpless when it happens but we'll have to give it another month. With

regard to the acupuncture it is interesting you mention that because I just

picked up a brochure from a Chinese medicine shop here talking about how it can

help gyno pain. So that will be the next thing to try. I know you like

alternative therapies - me too and even our family doc spent several years in

China and studied acupuncture over that time, so will ask him about it when we

see him again (he is a medical doc who runs a natural therapies holistic

practice here) but we only get to see him every couple of months. Acupuncture

has really helped me with nerve pain in the past - its just beautiful in fact

now I think about it I should go back and have some more done for myself!

Thanks again and please thank your friend for her valuable input. Looking

forward to hearing your results also in the hope that you will find some

resolution to your own problems. pamela

Hi Pamela, I took the liberty of running your daughter's history by my

friend,maintaining your anonymity, of course. I wondered if she could tell

whether the doctor was doing a good job in evaluating whether the lesions were

truly endo or not. She said it was impossible to tell

> from the data. Sometimes there is scar tissue that is not endo. On the other

hand, sometimes doctors who are not as experienced as they think they are look

only for cysts and certain types of tissue--I think she said usually larger and

darker--but endo scar tissue can also come in small spots and in lighter

colors. It can even be clear.

..she actually recommended acupuncture and chinese herbs. (Not medical doctors

who practice acupuncture; in the states, they just get a few weekends of

training compared with real acupuncturists who train for years). She said that

younger women are more responsive to acupuncture for gynecological issues. And,

the way Chinese medicine diagnoses things, they don't need the precise Western

diagnosis in order to help. I don't know what your feeling about acupuncture and

alternative medicine is, but that's her personal opinion. She is both

a nurse-practitioner and a fully trained acupuncturist. (Personally, I've had

some very good and some non-productive experiences with acupuncture. It helped

some symptoms and not others.)

Shayna

PENNY - CHRONOLOGY:

JUN 2005: Dysmenorrhea commenced, starting a week before period due, and

continuing two days into the period.

SEP 2005: 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 became incapacitating, occurring

intermittently throughout EVERY day during the month, not relieved by pain

killers, and only helped by hot packs. Four visits to Emergency. Blood tests,

pelvic ultrasound, CT (check by mito doc for small bowel obstruction) all

clear.

OCT 2005: Gyn laparoscopy found " scar tissue " on uterus which he excised - said

it did not look like endo . Histopathology also inconclusive. After that pain

completely went away for a couple of months!

NOV 2005: Gyno put her back on the pill (non-continuous).

DEC 2005: Pain started again, limited to a week before and 2 days into period.

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

short-lived, once again related to period (1 week before and 2 days into).

FEB 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 what happens (due back to see doc in March)

however already she is getting pain back at the time her period would have been

due...

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EXPERIENCE OF OTHERS

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

tumours (probably also infected) also causing

temp 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)

: Hysterectomy at 36 yrs old due to extreamly heavy, never ending periods

(moderate pain). Believes the uterus is just another muscle affected by mito.

Laurie F: Had periods that would last several months at a time. Always had

heavy periods. Hysterectomy when 40 found that uterus had deep pockets

throughout, so the lining could never completely shed. Hormone therapy didn't

work at all

during the time it was tried. Endo: When I had my first C-section, they found

the top of my bladder covered - none in the usual places - no explanation for

how it got there.

a: Started having problems at 16. Severe abdominal pain on ovulation, on

occasion losing consciousness. Pain ceased 24 hours before onset of menses,

eliminated by bc pill. When she went off pill to become pregnant pain returned;

when put on a drug to induce ovulation pain was much worse, accompanied by a

rash. Toxemia after becoming pregnant.

a's daughter (now 30) rushed to hospital with severe abdominal pain which

turned out to be gynacological. Now on bc pill. Recently had uterine polyp

removed.

: Pain is a week before period, during and a week after, very severe

pain. cant even stand to wear clothes..Gyno says its either endo or internal

cystis.

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

Anne-Marie: Endometriosis wrapped around bladder and bowels.

: Had uterine fibroids and endometriosis.

: 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 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 ???

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