Endometriosis Experiences-4

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Many thanks to those who continue to share so that others might not feel alone~

1.)Did you have problems obtaining a diagnosis of Endometriosis?
**yes because I was "too young" and the severe cramps were "normal"

2.)Do you have any family members with Endometriosis?
**yes, a second cousin

3.)Are you a DES daughter?
**no

4.)Were you every on Birth Control in your lifetime?
**yes
If so for how long?
**6 years

5.)Did you use tampons or pads during your period?
**yes, mostly pads

6.)What symptoms do you/did you have, associated with Endometriosis?
**it seems like all of them; throwing up on the first day of my period,
reeling in pain on the onset of menstruation, pain in my abdomen to the
extent that I could lean against anything or lay my arms across my stomach,
diarrhea, constipation

7.)Are there any issues you are confused about regarding endometriosis?
**I was told I would be better after my surgery and I am perplexed as to
why they believe this if there is evidence against this very thing.

8.)Do you know about the Endometriosis Association?
**No

9.)What treatments have you tried to alleviate or cure your endometriosis?
**They did the pill (not to treat it although it helped when I was
first on it), surgery, then the hysterectomy

10.)Are you aware that taking estrogen replacement after a hysterectomy
for endometriosis can cause any remaining endo growths to continue to bleed
and cause pain, inflammation and scarring?
**I had no idea and am a little pissed that I was not
told since I am on only estrogen hrt!

1. Did you have problems obtaining a diagnosis of Endometriosis?

**Yes! I have had problems with severe pain during
periods since I was 12. I am now 29.

2. Do you have any family members with Endometriosis?

**Yes. My mother and 2 aunts.

3. Were you every on Birth Control in your lifetime? If so for how long?

**Yes Depo-shots. 4 years

4. Did you use tampons or pads during your period?

**Both, periods were too bad not to.

5. What symptoms do you have associated with Endometriosis?

**Front and lower back pain, pain before and after sex, and severe pain
before and during periods, irritable bowel, fatigue
and depression from the constant pain

6. Are there any issues you are confused about regarding endometriosis?

**Yes how you get it and how you get rid of it not just go around it

7. Do you know about the Endometriosis Association?

**Yes

8. What treatments have you tried to alleviate or cure your endometriosis?

**I was diagnosed with Int. Cyst. So I have had a bladder expansion.
Laparoscopy with laser removal of endometriosis, and possible hysterectomy.

9. Any information I can help you with??

**What’s the best possible method of treatment?!

1.)Did you have problems obtaining a diagnosis of Endometriosis?

**yes

2.)Do you have any family members with Endometriosis?

**No

4.)Were you every on Birth Control in your lifetime?

**Yes

If so for how long?

**8 years on the pill and 2 years on Depo-Provera shots and as
soon as they found out what I had they took me off the shots.
I thought the shots gave it to me to start off with.

5.)Did you use tampons or pads during your period?

**pads only

6.)What symptoms do you/did you have, associated with Endometriosis?

**leg pain, abdominal pain, fatigue, anemia, sexual intercourse was very
painful which caused me to be depressed and feel like I was a bad wife
because I did not want to have sexual intercourse with my husband.
I had severe menstrual period pain, and I would flood.

8.)Do you know about the Endometriosis Association?

**No

9.)What treatments have you tried to alleviate or cure your endometriosis?

10.)Are you aware that taking estrogen replacement after a hysterectomy
for endometriosis can cause any remaining endo growths to continue
to bleed and cause pain, inflammation and scarring?

**no, that is scary, because I still have some abdominal pain and
the doctors just tell me that it is ghost pains, to try and ignore it.

11.) Do you have any advice or anything you'd like
to share with other women who have endo?

**Learn everything you can!

1.)Did you have problems obtaining a diagnosis of Endometriosis?

**Yes, suffered for years from pain, bleeding, clotting and
generally feeling unwell & visited a gyn more than once

2.)Do you have any family members with Endometriosis?

**No

3.)Are you a DES daughter?

**No

4.)Were you every on Birth Control in your lifetime? If so for how long?

**On & Off a few times, never really agreed with
me though, I had spotting all the time

5.)Did you use tampons or pads during your period?

**Both when the bleeding was heavy & when it was really bad I could only
wear pads because of clots, not usually able to go out for a few days

6.)What symptoms do you/did you have, associated with Endometriosis?

**heavy bleeding, clotting, no recognizable periods, one ended as another
started, severe lower back pain, abdominal pain, vomiting, painful sex,
fainting, generally unwell & grey pallor

7.)Are there any issues you are confused about regarding endometriosis?

**Yes why is it so mis diagnosed when it seems to be so common

8.)Do you know about the Endometriosis Association?

**yes

9.)What treatments have you tried to alleviate or cure your endometriosis?

**pain relief, mirena coil, various other drug treatments all given
without diagnosis of endometriosis, when finally given a laparoscopy,
I had stage 3 endo, multiple cysts on my ovaries, adhesions on pelvis
wall & pouch of douglas. Decided at age 39 (1 year ago) to have a total
hysterectomy with removal of ovaries. I do feel so much better in my general health.

10.)Are you aware that taking estrogen replacement after a hysterectomy for
endometriosis can cause any remaining endo growths to continue to bleed and
cause pain, inflammation and scarring?

**Yes I was told this & would like to know of
time scales of when this could happen

11.) Do you have any advice or anything you'd like
to share with other women who have endo?

**Don't give up without a fight, don't try to talk yourself out of it,
it's easy when thinks are OK to think it will always be OK, and tell
your Gyn that it's not so bad this time. Take your
husband or partner to your consultation

12.)Any information I can help you with?

**Yes I am trying to find out more about life afterwards, I have had a
few thrush infections recently and warning bells are beginning again, should
I be concerned & where can I find out more

Yvonne Orr

1.)Did you have problems obtaining a diagnosis of Endometriosis?

**Yes. I was sent home many times from the walk in emergency room with unknown
pain and was told I may have IBS and frequently was tested for gallbladder or
appendix problems which proved nothing. It wasn't until many years of
stomach/menstrual problems had passed that my period started getting very light
but I had major cramping each time and excruciating pain lead me to finally have
an ultrasound which showed my ovary was the size of an egg with a cyst which
later, laparscopically, turned out be the key to diagnosing me with level 4 endo.

2.)Do you have any family members with Endometriosis?

**No

3.)Are you a DES daughter?

I don't know what DES is

4.)Were you every on Birth Control in your lifetime? If so for how long?

**I was on birth control pills since the age of 16 until 22 years old

5.)Did you use tampons or pads during your period?

**I always used pads

6.)What symptoms do you/did you have, associated with Endometriosis?

**Abdominal pain, lower back pain, bowel problems. Bloating, pressure, frequency
of urinating and feeling like i have my period but don't.

7.)Are there any issues you are confused about regarding endometriosis?

**I am wondering how I have such a severe case (level 4) and how some people have
cases of endo that don't even bother them. I also don't understand why the
most aggressive treatment, Lupron, has not worked for me and what I can do to
avoid having a hysterectomy as directed by my doctor.

8.)Do you know about the Endometriosis Association?

**yes

9.)What treatments have you tried to alleviate or cure your endometriosis?

**I was on consistent birth control pills with no placebo for 2 months which
proved to be under-treating my case as my intestines were suddenly affected...
I then agreed to go on lupron depot injections once a month for 6 months.
I have had no relief and my symptoms have gotten worse. I am now in physical
therapy twice a week for terrible back pain and have to take pain meds almost on
a daily basis in order to function. Unfortunately I have just learned that I
suddenly have a disc problem with my back from an MRI
reading and I think it was caused by Lupron.

10.)Are you aware that taking estrogen replacement after a hysterectomy for
endometriosis can cause any remaining endo growths to
continue to bleed and cause pain, inflammation and scarring?

**No I was not aware of that and frankly, that scares me.

11.) Do you have any advice or anything you'd like

to share with other women who have endo?

**Just as I think I am almost accepting of this mysterious disease, something

else goes wrong with me or limits my chances of having children or living
normally again. I do not mean to be negative about this but I definitely have
bad days where I really find myself angry for having
no support, real reason or relief for this disease.

12.)Any information I can help you with?

**Do you know if its true that if you have a severe case of endo, is freezing
your eggs for future pregnancy not an option?

Do you know if hysterectomy is the only other option
if medicine is not controlling the endo enough?

Do you know if its a good idea to go on a second round of lupron if the
first round was only successful in keeping my ovaries normal size but not giving me pain relief?

What is DES and i wonder why it sounds familiar in that maybe my
grandmother (my mothers mother, had something to do with DES)?

1.)Did you have problems obtaining a diagnosis of Endometriosis?

**I have had this since i was 14, I am now 20 and in 2001 I was finally diagnosed
after a laparoscopy with stage 3 endometriosis. Nobody, not even
my mom who had the same thing believed that i was sick

2.)Do you have any family members with Endometriosis?

**my mom

3.)Are you a DES daughter?

4.)Were you every on Birth Control in your lifetime? If so for how long?

**Yes I tired them all...I got all the side effects to all of them.
The longest I lasted on one pill was about 3 months

5.)Did you use tampons or pads during your period?

**pads, if I use tampons I hurt worse

6.)What symptoms do you/did you have, associated with Endometriosis?

**horrible cramps, nausea, constant diarrhea, cramps even when I didn't have my period

7.)Are there any issues you are confused about regarding endometriosis?

**no, its all clear I just wish it would all go away

8.)Do you know about the Endometriosis Association?

**yep

9.)What treatments have you tried to alleviate or cure your endometriosis?

**lupron, depo shot, birth control, progesterone pills, anything you could imagine

10.)Are you aware that taking estrogen replacement after a hysterectomy for
endometriosis can cause any remaining endo growths to continue to bleed
and cause pain, inflammation and scarring?

**awesome

11.) Do you have any advice or anything you'd like
to share with other women who have endo?

**If you think you have it and you think you are sick, you probably are
so don't let people tell you its all in your head

12.)Any information I can help you with?

1.)Did you have problems obtaining a diagnosis of Endometriosis?

**Definitely. I was told from age 15 that I was essentially a "wuss"
and couldn't handle the pain of a period. Finally at at 18 I was told I had
endo. Have tried everything from birth control, lupron, and lasering.
I am finally scheduled to have a hysterectomy in June *yay*. It is sad when a
woman of 25 feels only relief at that word. After the Lupron shots, I managed
to have 2 children, thank the Gods. I have done extensive research on
hysterectomy, so I know its not all sweetness and light, but I currently
cannot effectively raise my babies in the amount of pain I am in.

2.)Do you have any family members with Endometriosis?

**Mother

3.)Are you a DES daughter?

4.)Were you every on Birth Control in your lifetime? If so for how long?

**Yes. Several different occasions, limited amounts
of time each time due to intolerance.

5.)Did you use tampons or pads during your period?

**Tampons AND pads

6.)What symptoms do you/did you have, associated with Endometriosis?

**heavy bleeding, excruciating cramps, pain down the legs, and up the back,
LARGE blood clots, inability to straighten completely up while on my period,
painful bowel movements, diarrhea and constipation
flipping back and forth, painful intercourse.

7.)Are there any issues you are confused about regarding endometriosis?

**Does the pain in my legs mean it may have moved into them?

8.)Do you know about the Endometriosis Association?

**Yes, they are a wonderful organization. Due to unfortunate financial
difficulties, I have been unable to join as of yet. Soon I hope.

9.)What treatments have you tried to alleviate or cure your endometriosis?

**Birth control treatments, n-saids(no-no with my family, there is a history
of kidney failure due to n-saids), Lupron, laser
surgery, and FINALLY getting hysterectomy.

10.)Are you aware that taking estrogen replacement after a hysterectomy for
endometriosis can cause any remaining endo growths to
continue to bleed and cause pain, inflammation and scarring?

**Yes

11.) Do you have any advice or anything you'd like
to share with other women who have endo?

**If you believe you have endo, but your ob-gyn tells you you are crazy, BE FIRM.
A good doctor KNOWS the patient generally knows best. It is after all YOUR
BODY. If your current doctor won't help you, find
one who will. INSIST they listen to you.

12.)Any information I can help you with?

**Any info you have that may be pertinent, I am interested in. I have
many friends with endo, one of which desperately needs a hysterectomy,
but currently has no insurance. I feel so sorry for her. She has been thru
it all, all the treatments, etc., NOTHING helps.

Thank you for doing your part and posting this page!

1. Did you have problems obtaining a diagnosis of Endometriosis?

**yes. I was persistent enough to get to the bottom of my pain and did not
relent until I found a good doctor who knew what the hell they were talking about.

2. Do you have any family members with Endometriosis?

**I am pretty sure my mother had endometriosis.
She had an early hysterectomy when I was younger.

3. Were you every on Birth Control in your lifetime? If so for how long?

**On and off for the first ten years of sexual activity.

4. Did you use tampons or pads during your period?

**I used tampons religiously until diagnosed with endo. Now strictly pads.

5. What symptoms do you have associated with Endometriosis?

**Pain, irritable bowel syndrome, fatigue, pain
during intercourse, vomiting during cycle.

6. Are there any issues you are confused about regarding endometriosis?

**Not really. My doctor is the greatest. She specializes in care of my disease.

7. Do you know about the Endometriosis Association?

**Absolutely, any intelligent person seeking info regarding endo should check it out.

8. What treatments have you tried to alleviate or cure your endometriosis?

Three surgeries. I am going for a hysterectomy in July 2003. I am now 34,
and this will be the best treatment for me. My pelvis is completely frozen and
I cannot cope any longer. I will also have abdominoplasty @ the same time.

9. Any information I can help you with?

**No but this was very therapeutic, thank you.

Glenda McCartney,
Dallas, TX

1. Did you have problems obtaining a diagnosis of Endometriosis?

*At first my gynecologist put me on the pill to straighten out my
periods (had one for 28 days). I ended up having a laparoscopy in Nov.
and in Feb the next year had a laparotomy done, within 6 mos.
of that surgery, I was back in pain and it was worse than ever.

I decided to see a pelvic pain specialist in Morgantown, WV.,
he did wonders for me. I moved away from the area in 1995 but in 1999
I came back to this area and started seeing him again. After
a few years of drug therapy, and a miscarriage, we decided that
a hyster. would be the best thing. I know that does not cure Endo.
but it did cut the pain down big time. I had surgery Nov 2002 for
Endo and adhesions and I did at that time lose my left ovary/tube.
I did have my bowels reconstructed and bladder fixed.
I know that I will have to continue throughout my life to have
surgery due to the endo, but since I lost the
cervix and uterus, the pain is so much better.

2.)Do you have any family members with Endometriosis?

**Aunt

3.)Were you every on Birth Control in your lifetime?
If so for how long?

**Off and on for over 10 years

4.)Did you use tampons or pads during your period?

*Tampons during the day and pads usually at night

5.)What symptoms do you have associated with Endometriosis?

**extreme pain, irritable bowel syndrome, fatigue, anemia,
over active bladder, adhesions and scar tissue.

6.)Are there any issues you are confused about
regarding endometriosis?

**No, I have done so much research on this
subject for over 10 years

7.)Do you know about the Endometriosis Association?
(It's a great source of support and information!)

**Yes

8.)What treatments have you tried to alleviate or
cure your endometriosis?

**There is no cure--at least for me that is. I have been on
Lupron, birth control--sometimes i would have to take at least
2 a day, danazol, I have had 6 surgeries--the last two were
a vaginal hysterectomy and the latest one was to have my bowels
reconstructed due to wrapped around the left tube, bladder
fixed which was attached to my left ovary--which
still didn't heal right and I lost my left ovary/tube.

I still have my right ovary--but as of my last dr. appointment--
May 2003 my right ovary is showing up distorted on the ultra
sound machine. Endometriosis was also found on my lung.
So, needless to say there is no cure at this time.
The hard thing I am battling at the present is depression.
I didn't get depressed until I lost the left ovary and
had everything fixed up. I pray that my daughter does not
get this horrible disease. I am hoping one day a cure will be found.

9.)Any information I can help you with??

**Books, I would love a list of books that deal with
Endo/hyster/depression for around my age. Everything I
get or have seen is focused on older women.

1.)Did you have problems obtaining a diagnosis
of Endometriosis?

**Yes. the Dr. didn't believe me and did a so-called
test (a biopsy of my uterus), and told me I didn't
have it. I knew I did. A few years later, I was diagnosed.

2.)Do you have any family members with Endometriosis?

**Yes, my mom.

3.)Are you a DES daughter?

**?????

4.)Were you every on Birth Control in your lifetime?

**Yes. When I was diagnosed with endo, they put me
on different ones to try to regulate things. It made
things worse. Finally the Dr. tried me on Lupron,
which gave me a 41 day period (consecutive days).
So, he tried me on Depo-Provera shots, then I had a
period every 2 weeks like clockwork. I gave up seeing
him, because I was tired of being a human guinea pig
and suffering. I just let things get back to the
way they were, which was not good.

5.)Did you use tampons or pads during your period?

**I used pads mainly because tampons hurt too badly.

6.)What symptoms do you/did you have, associated
with Endometriosis?

**Groin pain, extreme fatigue, sick to stomach,
headache, moodiness, depression (past) now, post
hysterectomy (partial) mostly just the groin pain
or shooting/stabbing pain when I move a certain
way, also chronic bladder infections.

7.)Are there any issues you are confused about
regarding endometriosis?

**Right now I'm confused about how many of my
symptoms are caused by endo (since I had a partial
hyst.), and I'm confused about whether I
should/shouldn't be on hormones (premarin).

8.)Do you know about the Endometriosis Association?

**No, I'll check it out.

9.)What treatments have you tried to alleviate
or cure your endometriosis?

**birth control pills, Lupron injections, Depo-Provera
injections, surgery (laparotomy/laparascopic),
and finally partial hysterectomy.

10.)Are you aware that taking estrogen replacement
after a hysterectomy for endometriosis can cause
any remaining endo growths to continue to bleed and
cause pain, inflammation and scarring?

**No. This concerns me.

11.)Do you have any advice or anything you'd like
to share with other women who have endo?

**Think LONG and HARD before you get a hysterectomy.
Don't just do it on a whim when you are disgusted
with what you're going through. It can help, but IT
IS NOT A CURE ALL! For every problem it solves,
it creates two or three more, and, ladies, I regret
to inform you if you keep your ovaries you can still
get PMS. I get it every month, eat chocolate, cry,
get in agonizing groin pain, clean house obsessively,
yell, and go crazy, just like if I still had a uterus. :o(

12.)Any information I can help you with?

**I'd like more information about not taking premarin
after hysterectomy w/ endo. What else can be done
if you have vaginal dryness and lack of energy, etc.
Also, how does having hypothyroid play into this, or does it?

Thanks a lot for your consideration.

1.)Did you have problems obtaining a diagnosis of Endometriosis?

**Yes. Even now, after all of my problems with pelvic pain,
the phrase "possible endometriosis" or "you have evidence
of endometriosis" is used. Not one physician will commit
to a definite diagnosis of endometriosis.

2.)Do you have any family members with Endometriosis?

**No "official" diagnosis; however, my mother had
terrible cramps, bleeding, and fibroids, that
eventually led to a hysterectomy.

3.)Are you a DES daughter?

see question #2

4.)Were you every on Birth Control in your lifetime?

**Yes, off and on for about 10 years. Only once for
"treatment" of pelvic pain. Treatment for pelvic
pain only lasted about 4 months as I found very
little relief and had negative side effects from
the hormones (nausea, headache, moodiness).

5.)Did you use tampons or pads during your period?

**Had to use super absorbent, extra long pads.
Tampons were painful to use and did not provide
the absorption I needed.

6.)What symptoms do you/did you have, associated with Endometriosis?

**Severe back ache during ovulation and period.
Spotting during ovulation. Severe lateral hip pain,
pelvic floor (muscle?) pain; especially when bearing
down for bowel movements during my period. Diarrhea
during menstruation. Painful pulling sensation from
belly button down to pubic area after physical
activity at the waist (house cleaning, etc.), after
sex, or after pelvic exams. Very heavy bleeding the
first few days of my period. Terrible PMS symptoms
that led to a diagnosis of Premenstrual Dysphoric
Disorder which has led to my use of antidepressants.

7.)Are there any issues you are confused about regarding endometriosis?

**Why my physician will not say "Yes, you have
endometriosis"; yet I am being asked to try Lupron
(which I am afraid to take). I have had two
laparoscopies to remove adhesions and fibroids and
Dr. doesn't feel it is a good idea to do any more
surgeries. I don't know what to do anymore.

8.)Do you know about the Endometriosis Association?

**I do now. Thank you very much. Am now getting
copies of my records and plan on seeing a gynecologists
that deals mostly with endometriosis....hope it helps.

9.)What treatments have you tried to alleviate
or cure your endometriosis?

**Laparoscopies to remove scar tissue, b/c pills,
relaxation/homeopathic remedies

10.)Are you aware that taking estrogen replacement
after a hysterectomy for endometriosis can cause
any remaining endo growths to continue to bleed and
cause pain, inflammation and scarring?

**That is what I have been told.

11.) Do you have any advice or anything you'd like
to share with other women who have endo?

**Read books and go to web sites so that you do
not feel like you are a hypochondriac.

12.)Any information I can help you with?

**I would love feedback from people who have tried
Lupron shots and the side effects, if any, that
occurred. If there were side effects,
were they worth it?

Any advice may be sent to:

1.) Did you have problems obtaining a
diagnosis of Endometriosis?

***Luckily, after sucking it up and going to the
gynecologist, I was diagnosed in 7 months with
Stage 3 endo.

2.) Do you have any family members with Endometriosis?

**My grandmother had endometriosis and fibroids.
My mother has fibroids and I believe she has
endometriosis, but refuses to see a doctor.

3.) Were you ever on Birth Control in your lifetime?

**Yes, I have been on birth control pills almost
a year and continue taking them.

4.) Did you use tampons or pads during your period?

**tampons

5.)What symptoms do you have associated with Endometriosis?

**Severe, persistent pelvic pain and cramps; low back
pain; nausea/vomiting; heavy periods; sciatic nerve pain.

6.) Are there any issues you are confused about
regarding endometriosis? **No, I am thankful to have a very thorough doctor.

7.) Do you know about the Endometriosis Association?

**Yes, but the information is too vague since I
have numerous other medical problems that also
must be taken into consideration.

8.) What treatments have you tried to alleviate
or cure your endometriosis?

**Birth Control Pills, Laparoscopy with laser ablation.
Because of other medical problems, I am unable to
undergo any other medical treatments nor can I
have frequent operations. Unfortunately, the
endometriosis has become so severe and invasive
to the ovaries, ligaments, and uterus, I will be
having a total hysterectomy with bilateral salpinho-ooperectomy.

9.) Any information I can help you with??

*No.

1.)Did you have problems obtaining a diagnosis of Endometriosis?

**I still haven't been diagnosed with endo. I am 24
years old now and I've been suffering from all the
classic symptoms for about 4 years now. So yes I
am having problems being diagnosed. I have seen
many doctors in those 4 years and I have heard
anything from I just have swollen ovaries during
my periods which is causing my pain to I just have
bad crampy periods. They also tell me I am way
too young to go through something like that.

2.)Do you have any family members with Endometriosis?

**YES...my mother, grandmother, and two aunts.

3.)Were you every on Birth Control in your lifetime?

**Yes. I've tried a few different birth controls.
The longest I was on birth control was 2 years.

4.)Did you use tampons or pads during your period?

**Both. I always have to use both since my
periods are so heavy.

5.)What symptoms do you have associated with Endometriosis?

**Well lets see when my period is getting close,
I get this pain from my back to my stomach and
radiates down my legs. Sometimes it's so painful
it doubles me over and I can't walk. I have irregular
periods. My periods are very heavy where I can't
even go out of my house for a couple of days.
I am also anemic. I have a lot of clotting during my
periods.Which the doctors I've seen tell me is
normal to have fist size clots. I have also been
trying to get pregnant now for about two years and
I haven't been able too yet. But I don't know if that
is associated with this or not since I have
not yet been diagnosed.

6.)Are there any issues you are confused about
regarding endometriosis?

**Not really I have read a lot about endo.

7.)Do you know about the Endometriosis Association?

**No

8.)What treatments have you tried to alleviate
or cure your endometriosis?

**Well, I tried going on birth control it helped
some what but after awhile it didnt help anymore.
I've seen many doctors in my area.

9.)Any information I can help you with?

**Maybe some more facts on endo and is it possible
for someone my age to have it.

**Thank you for letting me do this. It's nice to
see a site that lets women speak out about this.
You can use my name its Erin:)

© Jeannah McElroy. 2002

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