Endometriosis Experiences 2

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Thanks to all who have taken the time
to share their experiences with us!!

1.)Did you have problems obtaining a diagnosis of Endometriosis?
**No, I did not even know that I had endometriosis until a laproscopy
was done to determine the size of the fibroid tumor.

2.)Do you have any family members with Endometriosis?
**Not to my knowledge. I have friends that have been diagnosed with it
and who are unable to conceive.

3.)Were you every on Birth Control in your lifetime? If so for how long?
**Yes, the birth control pill, for approximately one year, when I was 18.

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

5.)What symptoms do you have associated with Endometriosis?
**I didn't know I had this until I was told. Although I have experienced
horrible cramps throughout my menstruation. I never thought
I might have endometriosis.

6.)Are there any issues you are confused about regarding endometriosis?
**No

7.)Do you know about the Endometriosis Association?(It's a great source
of support and information!) The url is on my homepage.
**No, I didn't know about the association; however, as I have just had
a hysterectomy, I don't feel that it now pertains to me.

8.)What treatments have you tried to alleviate or cure your endometriosis?
**A total hysterectomy - see questionnaire above for explanation.

9.)Any information I can help you with?
**Not that I can think of.

1.)Did you have problems obtaining a diagnosis of Endometriosis?
**Yes. Iíve had this pain and problem for some time now, but my last
ob-gyn didnít think it was unusual until the day the pain was so bad
she thought my appendix was bursting right there in her exam room.
I switched ob-gyns and luckily this time the doctor paid attention.
I had been telling my old ob-gyn for months about the increasing pain
and heaviness of my period. I guess she wrote it off as not serious.

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

3.)Were you every on Birth Control in your lifetime?
**Yes 6 months

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

5.)What symptoms do you/did you have, associated with Endometriosis?
**Premenstrual spotting/bleeding, severe cramping, severe pain coming
days before my period and lasting on one degree or another 75% of the
month, heavy bleeding (clotting)rectal bleeding with my periods,
bleeding when I shouldnít be.

6.)Are there any issues you are confused about regarding endometriosis?
**Why is it that the best we can do in the way of cures is to deal
with the pain, but not the heart of the disease? Is any significant
research being done as to the actual cause of the disease?

7.)Do you know about the Endometriosis Association?
**Yes

8.)What treatments have you tried to alleviate or cure your endometriosis?
**Pain killers. My new ob-gyn has me scheduled for a laparoscopy and after
that we will discuss Lupron.

9.)Any information I can help you with?
**This is my first laparoscopy. What should I expect?
What do you know about Lupron and what it does? Thank you.

1.)Did you have problems obtaining a diagnosis of Endometriosis?
**Yes, definitely, but that was a long time ago.(hopefully it is
better now with new technology.

2.)Do you have any family members with Endometriosis?
**I have two cousins who had it and have had hysterectomies.

3.)Were you every on Birth Control in your lifetime?
**yes
If so for how long?
**about a year

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

5.)What symptoms do you/did you have, associated
with Endometriosis?
**Extreme bleeding during menses. Extreme pain during menses, and
ovulation, as the one doctor said after surgery, there should
be another term for the pain some people have had to endure. Periods
were at least a week long, during the last probably 8 months prior
to the hysterectomy I was bleeding all but a few days of every month.
(I was also extremely tired during this time, no wonder, no blood!)
Distended abdomen. Sexual intercourse became unbearable during
the last year. I had to have support to move around the last few months.

6.)Are there any issues you are confused about regarding endometriosis?
**Not really.

7.)Do you know about the Endometriosis Association?

8.)What treatments have you tried to alleviate or cure your endometriosis?
**They did nothing back then, they tried putting me on the pill but
it made everything worse for me.

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

**One little tid bit of info, I do not know how old you are or the
people are that might be going through this, as stated, I am writing
about all of this 26 years after my hysterectomy. While the first year
was hard, I feel wonderful now. No more pain! and, as I am now almost
51 most of my friends are starting to go through menopause and are
dealing with their own problems with that. I sit and think to myself,
well, at least I do not have to deal with that! Also, I have been told
by a couple of people with doctorates in different life sciences areas
that work for NASA and are very in tune with body functions, in response
to my questionings, that eventually the body will not only recover but
that the other hormone producing organs of our bodies will begin
producing the hormones we need. It is a matter of the body and brain rerouting
information. When I first had my hysterectomy my doctor did not
want me on HRT as they needed to make sure the body was totally rid
of the endometriosis, that if HRT was begun too soon and any shred of the
disease was still there it would begin to grow again. They said when
and if I needed it after the first year they would put me on them.
I asked how I would know if I needed them and they just said, you will
know! Well, I never felt like I needed them after the first probably 7
months. I am active, physically fit, and feel great! I am 51 but no one
believes me, I look maybe 35 (I am told). So, my skin is in great
shape, my libido is in fine working order too. Actually I feel
like I almost went through, about ten years ago, a second puberty!
That is when I began asking questions of people concerning the
hormones that were supposedly absent from my body. I do not know for
sure that the other organs and the brain reroute and take over, but I
am inclined to believe them due to my own observations. So,
take heart and know that things do get better, eventually, there is
life after this horrendous disease, and it is incredible!

You do hint at, with comments and questions, that you also had to endure
the disbelief of doctors and the treatment of yourself as "crazy"
this should never ever happen. That was my own little personal hell for
too many years, and it is a travesty! Doctors simply must start to trust
their patients and never leave any stone unturned in trying to diagnosis
and treat a person! Now, I feel very free to tell a doctor to basically
go to hell when they treat me with so much disrespect as to not want to
listen to me, or if they dare treat me as if I do not know my own body!
and, I will refuse to pay for any visit during which that happens! I
tell them that I should charge them for wasting my time by refusing to
listen to my symptoms, what ever they might be!

1.)Did you have problems obtaining a diagnosis of Endometriosis?
**Yes, I underwent medical testing for a year and a half before having
a lap done. Some tests should not have even been performed. Some
made me hurt more to the point I had to be sedated to do them.
Some I was too dehydrated to have, (ie: ultra sounds, die tests), but
they were done anyway. I know there were some false results there.
Finally had a lap done and was told I had Endo, Stage I. It advanced
over a year to Stage III today.

2.)Do you have any family members with Endometriosis?
**None that I know of. But am told to watch daughter as it's hereditary.
Not sure on that though. Will ask my doctor about it to be sure.

3.)Were you every on Birth Control in your
lifetime? If so for how long?
**Yes. I was placed on CBP's (continual birth control pills) as soon
as I had the lap. I started those, which helped for the first three
months. Then the pain from the endo came back, gradually. In the
course of the next nine months, it got worse, worse than before, and
was also effecting not only the right side, which at the time was the
only side affected, but also on the left just as badly as the
right. I went for my yearly exam, which hurt terribly. The
doctor said it shouldn't have hurt, at least not that bad anyway. Then
prescribed Lupron shots for six months. I just had my last shot on June
26th. The Lupron has helped me tremendously. But the doctor said she
can only have me on it for six months. Soooo...

4.)Did you use tampons or pads during your period?
**No, I always used pads. My periods were only a day long, so didn't
need to worry about too much.

5.)What symptoms do you/did you have, associated with Endometriosis?
**Here I could write a book and will probably forget some things here.
Let's see. When the pain first started, the doctor thought it was
acute appendicitis. I went to see a surgeon, who did a tracial (sp)
test and also a colonoscopy. Found nothing wrong. Was running fevers
from 101 to 105 daily, with not let down. Got used to taking cold showers.
Had to do something to try to get the fever down. Nothing helped. It
was difficult to eat or drink anything, hence dehydration set it.
But no one would help me in the medical field with that. Just said
I was too dehydrated to have tests done, but did them anyway. Really bad
pain. Sometimes it was hot and stabbing, like someone sticking me with
a hot knitting needle or knife. Other times it was like someone had
kicked me in the stomach. Pain the doubled you over. Hard walking with
it. Almost always doubled over and when walking, hanging onto the
abdomen,thinking it was going to fall off me. I had what felt like
a hand up in my vagina, scratching me constantly.Just hurt like crazy.
I didn't want to eat anything or drink anything due to it not staying
in. It would only be right back out in a matter of minutes, so
stopped eating and drinking anything.

6.)Are there any issues you are confused about regarding endometriosis?
**Yes, How can endo be evident if a complete hysterectomy is
done, with nothing there for endo to be there? I am really confused
on that part. I hear others saying it doesn't leave just cause you
have a hyster.???? How can you have endo without the parts?

7.)Do you know about the Endometriosis Association?
**Yes, was with the support group there but left due to it being
too "political" and too many rules. I was not able to voice my opinions
or whatnot, so left. I felt kicked due to being "reprimanded"
by the people that run the forum for voicing my opinion. I don't
usually speak up much,especially when it pertains to me. I enjoy
trying to help others and not think about what is going on with
me. But when I am asked to please voice my opinion on a matter, I did.
Then was reprimanded to the whole group. So I left, along with others
and we have since formed our own forum.

8.)What treatments have you tried to alleviate or cure your endometriosis?
**I have been on continual BCP's and six months of Lupron shots.

9.)Any information I can help you with??
**Not at this time. I am scheduled to have a complete hysterectomy on
Aug. 22. I am scared, nervous and whatnot, but not saying anything to
family or anyone. When it is brought up, I just tell them to shut up
and drop it. My way of avoiding it I guess. I am ready for this,
just nervous and scared. Of the after effects. I have all the children
I wanted in life, two. So I am ready for this, but not
ready for the after effects. That's what scares me
the most, not being able to do things.

1.)Did you have problems obtaining a diagnosis of Endometriosis?
**It took 5 Dr.'s and 5 long years for some one to diagnose me.

2.)Do you have any family members with Endometriosis?
**Great Grandma, Grandma, My Mother, My Aunt, Me and My Sister.

3.)Were you every on Birth Control in your
lifetime? If so for how long?
**Once for 3 months to try to counter act the Endo.

4.)Did you use tampons or pads during your period?
**Both, Depending on the pain I felt at the time.

5.)What symptoms do you/did you have, associated with Endometriosis?
**Very bad periods with heavy bleeding and cramping so bad i couldn't
move. Pain in lower abdomen and upper legs, Painful intercourse,
Toward the end before my surgery I quit having a period all
together. Keep in mind I was 23 years old at the time.

6.)Are there any issues you are confused about regarding endometriosis?
**no

7.)Do you know about the Endometriosis Assoc?
**no

8.)What treatments have you tried to alleviate or cure your endometriosis?
**Birth control was a failed attempt for me. In 1997 right after
i turned 23 they did a complete Hysterectomy.

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

2.)Do you have any family members with Endometriosis?
**no

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

4.)Did you use tampons or pads during your period?
**same as above

5.)What symptoms do you/did you have, associated with Endometriosis?
**Bloating severe pain, heavy bleeding, infertility, irregular cycles

6.)Are there any issues you are confused about regarding endometriosis?
**I would love to know the cause of endometriosis

7.)Do you know about the Endometriosis Association?
**no

8.)What treatments have you tried to alleviate or cure your endometriosis?
**2 laparscopic surgery's, 2 6 month courses of lupron, pain
medication, abdominal LSO and finally a hysterectomy.
A LOT OF SWEAT AND TEARS

9.)Any information I can help you with??
**I would love to know the cause! When I was 17 years old I took three
pregnancy test that all showed positive. I was afraid to tell my mother
so, I put it off and finally told her that I thought I was pregnant
and left out the part of the 3 positive pregnancy test. She went
and bought another test and I started bleeding, so I never told
her about the other test. I did not go to the doctor. So, now I
wonder if I was really pregnant and miscarried and too scared to
tell my mama and not going to the doctor to have a DNC(which at
that age I did not know about) if all of this is the cause. I would
like to know if I brought this on myself?

1.)Did you have problems obtaining a diagnosis of Endometriosis?
**Yes I did, I went 1 year with alot pain. Then my OBGYN decided
to do a Laparoscopy...that is when he let me know I had Endometriosis.

2.)Do you have any family members with Endometriosis?
** Yes... My mother's doctor told her she had had Endometriosis
that developed into uterine cancer. Is this so??????

3.)Were you every on Birth Control in your lifetime?
** Not really. I am now on birth control.**
If so for how long?
** I have now been on them for 3 months

4.)Did you use tampons or pads during your period?
** Yes i have used both tampons and pads**

5.)What symptoms do you/did you have, associated with Endometriosis?
** Sharp pain in abdomen***

6.)Are there any issues you are confused about regarding endometriosis?
** My mother is always after me about getting a hysterectomy...
Is this the only alternative I have to get relief from all the pain.**

7.)Do you know about the Endometriosis Association?
** NO I didn't know about Endometriosis Assoc., but I do now.

8.)What treatments have you tried to alleviate or cure your endometriosis?
** Laporoscopy. Birth control pills...

9.)Any information I can help you with??
** I need some info on how i can live with endometriosis..
Mainly, right now I have a hard time having sexual intercourse with
my husband. He is very good and patient with me, cause the pain
is something awful. But I don't like the idea of him having to suffer
along with me. Since it hurts too bad when we have sex. So any info
you can send me I would appreciate it.

1.)Did you have problems obtaining a diagnosis of Endometriosis?
**Not at all. The first time I saw my regular ob/gyn about the pain,
he set up a "lap" and confirmed endometriosis.

2.)Do you have any family members with Endometriosis?
**Not that I am aware of

3.)Were you every on Birth Control in your lifetime?
If so for how long?
**Yes, for about 4 years

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

5.)What symptoms do you/did you have, associated with Endometriosis?
**It started with severe pain around the time of my periods, then
it went to severe pain most of the time, period or not. Also,
intercourse was very painful.

6.)Are there any issues you are confused about regarding endometriosis?
**No, my Dr. has pretty much kept me well informed (I think)

7.)Do you know about the Endometriosis Association?
**Yes

8.)What treatments have you tried to alleviate or cure your endometriosis?
**I have had three laps where it was removed all three
times and also all adhesions were taken down. I was also on birth
control to try to prevent it from coming back (or to ease the pain)

9.)Any information I can help you with??
**Yes, I am scheduled to have my hysterectomy in 2 days, Saturday,
February 10. You could tell me what to expect. I am only 27 years
old and am very uncertain about what the menopausal state will be like.

1.)Did you have problems obtaining a diagnosis of Endometriosis?
**No; in fact the first OB-GYN doc that I went to made the diagnosis
right away during my first GYN check up when I was 20 years old.
He was my mother's OB-GYN and I just figured that he would be fine
for me to go to. He was probably in his 50's at the time. He told
me that I needed surgery right away and probably a total hysterectomy.
You can imagine my shock. I left the office in tears and was so upset
that I couldn't even speak to my fiance who was waiting for
me in the waiting room. I told the director of my nursing school
that I was going to have to drop out(I was just a little over 4
months away from graduating) and have surgery for endometriosis. Thank
God she referred me to another doctor for a second opinion. When
I told him I was there for a second opinion he held up his hand and
told me not to tell him anything else (I hadn't even told him what
the first MD said). He wanted to examine me first. He didn't make a
definitive diagnosis at that point. He had a couple of tests done
first. In the end however, I did have surgery.

2.)Do you have any family members with Endometriosis?
**Not as far as I know.

3.)Were you ever on Birth Control in your lifetime?
If so for how long?
**Yes; after the surgery. I was on birth control
pills off and on from age 20 until age 26.

4.)Did you use tampons or pads during your period?
**Kotex Super Maxi Pads.

5.)What symptoms do you/did you have, associated with Endometriosis?
**Terrible cramps, back pain, leg pain, nausea, diarrhea,
tremendous abdominal pressure, and fatigue much of the time.

6.)Are there any issues you are confused about regarding endometriosis?
**Not anymore.

7.)Do you know about the Endometriosis Association?
**I think I have heard of it.

8.)What treatments have you tried to alleviate or cure your endometriosis?
**As I mentioned before, I had surgery when I was 20. The doctor
who gave me the second opinion ...which was the same as the first
doctor...did my surgery. He was very conservative. I had terribly
extensive disease. He said that it was the worst he had ever seen
in a person my age. He salvaged everything that he possibly could.
The left ovary was completely destroyed... no recognizable
ovarian tissue left, by a grapefruit-size "chocolate" cyst. My right
ovary had a cyst on it but the doctor managed to save about 3/4 of
that ovary. My uterus had fallen back into the cul-de-sac and that
sac was full of cysts. There were cysts all over my large intestine
and broad ligaments, and throughout my abdominal cavity as far
up as my umbilicus. My surgeon corrected the positioning of
my uterus and cleaned out my "mess" as best he could. He repositioned the
left fallopian tube so that it was close to the right ovary. When
he was finished my one remaining portion of an ovary was being
cradled by two fallopian tubes. Instead of using the very expensive
new drug, Danazol, to treat my disease, my doctor prescribed
regular birth control pills for me to take ...with a different twist.
I took them until I had breakthrough bleeding and then I would
increase the dose. I increased the dosage a few times until I
reached a level that I didn't have breakthrough bleeding anymore.
I was on that regimen for a total of 15 months ...9 of those without
a single period or any breakthrough bleeding at all. At that time he
stopped them and told me that they had time to do whatever they
were going to do, at that point, I had just been married a little
over a year and I wasn't ready for children, so I took just the regular
regimen of birth control pills and had a "normal" period every month.
Thanks to that doctor and his conservative approach to my disease, I
have two sons ...one is 19 and the other is 15. As far as I
know, there has been no recurrence of my disease. I went for 20
years without the pain and terrible cramps and bleeding that
I suffered through as a teenager.

9.)Any information I can help you with??
**Not unless you have information on Fibroids, which I have now
been diagnosed with as of this past year. Unfortunately,
I have begun to have symptoms very similar to those that I had
with the endometriosis. I will have an ultrasound this next week
to determine what exactly is going on and what I need to do next. I
am now 43 years old and the symptoms I mentioned have been present
for about the past 2 years. I hope that the information I
have provided you with is helpful to your research.

1.)Did you have problems obtaining a diagnosis of Endometriosis?
**Yes, I was having pain and heavy periods since I was 14 or 15.
I was around 22 before I had my 1st laparoscopy and then all he did
was look and say that yes, I have endometriosis. He gave me that
drug that was supposed to help it. It just made things worse.
I started having bleeding with my bowel movements and I had constant
yeast and bladder infections. I got pregnant and then had horrible
bleeding and pain and they took the baby.

I finally moved to Dallas after a couple of more episodes with
this doctor and found another doctor who helped me a lot. I had
a laser laparoscopy and uterine suspension. My bladder was
folded over and pinned down by the endometriosis and my colon was
twisted and plastered to my side.

I had a very large amount of endo. They lasered it all out and
my weight dropped back off and the pain subsided. Within a
couple of years it was back. I had the same problems. It always
attacked my bladder, bowel, stomach. Every year and a half I
would have to go in for laser surgery.

I had pneumonia 3 times and was hospitalized, had a baby boy and
an emergency c-section because my heart stopped twice. I lost
2 more babies. One died inside of me and started deteriorating.
That was hard because I had seen its heart beat just a few
weeks earlier on the sonogram. More laser surgery. It had gotten
so bad that I was throwing up my bile. They told me on this last
round that I would not be able to ovulate for a couple of months
because of what they had done. I got pregnant immediately and
ended up staying home in bed for this one. I had a son. He cracked
my pelvic bones in 12 places. I was in a great deal of pain but had
a c-section and another beautiful baby boy. They tied my tubes because
they did not want me to get pregnant again because I had so much
trouble. I began bleeding almost constantly and the pain really
became so severe that the rx pain pills did not work any longer.

I would walk across the room and fall to the floor in pain and crying.

They did a total hysterectomy for a total of 22 surgeries.

2.)Do you have any family members with Endometriosis?
**My mother and her sister both had it. Others with female problems.

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

4.)Were you every on Birth Control in your lifetime?
From 24-37

5.)Did you use tampons or pads during your period?
**Tampons only briefly and then large pads.

6.)What symptoms do you/did you have, associated with Endometriosis?
**Pain, numbness in my legs, heavy bleeding, and huge clots, bowel
problems, bladder and stomach and digestive problems, swelling, weight
gain, depression, moodiness, crying, temper tantrums, feeling terrible all the time.

7.)Are there any issues you are confused about regarding endometriosis?
**Why can't they find a cure for this horrible problem that ruins a woman's life?

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

9.)What treatments have you tried to alleviate or cure your endometriosis?
**Medicine, surgeries, diet, exercise, rest.

10.)Any information I can help you with??
**A doctor that will help me with endometriosis after hysterectomy

Endometriosis Experiences 3

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