ENDOMETRIOSIS EXPERIENCES - 6

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

**I didn't

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?

**Yes, 15 years

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

**Yes

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

**Horrible pelvic pain - 24/7, bladder infections, heavy periods

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

**No

8.)Do you know about the Endometriosis Association?

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

**Had total 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, that's why I'm on a very, very low dose of HRT.

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

**Get the proper emotional support. If those in your life don't support you,
then get away from them. They will only make you sicker.
Find those who respect you and listen to you.

12.)Any information I can help you with?

**No

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

**Yes, Just recently diagnose after 10 years of a very long, painful and drawn out process.
I received an ultrasound 1/05 and fibroids and cysts were seen. The doctor is certain I
have endo because of the 3 mo. lupron depot results and my symptoms. A hysterectomy is next.
I am now 45yrs old and have gone through way to much for something that is, regarded by medical
establishment, to be so common. Yet, not one doctor really took any of my initial symptoms
as needing medical treatment. I am very thankful that I have found the doctor who is currently helping me.

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

**Suspected my mom had till she passed away at 52 years old. I recall driving her to the
doctors several times for female problems (late 30's), she was bleeding a lot w/ pain.
the doctor gave her BC pills, but that only made her pain worse. Her health deteriorated over
the years. I really never put anything together until I began having problems too (35 yrs.).
After she was already gone. My daughter (23yrs)has had hard periods and and fatigue. I am
watching over her like a hawk. She has a very good doctor
and is monitoring her w/ the birth control pill right now.

3.)Are you a DES daughter?

**I don't think so

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

**4 years (14yrs old to 18yrs old) for painful heavy teenage periods...became pregnant twice
18yrs & 20yrs while on BC, my then husband and I decided
I should have a tubal ligation right after I had my daughter.

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

**Both - extra super / extra absorbent. Found depends type products -
undergarments to be the best for out in public and for peace of mind.

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

**Over 10 years endurance of a growing list of overlapping symptoms. I really don't know
where one begins and one ends that would be an endo related symptom. The longest symptom is w/
period...severe pain and pressure in the pelvic / lower abdomen. The right lower front and
right lower back pain became chronic the last 8 yrs., but the lupron depot has decreased the
pressure / pain greatly. Cramping in tops of thighs / groin area. Heavy clotting and flow.
3 days to 5 to 10 days, back to 5 days. Hot flashes and drenching night sweats. Along w/ fatigue
to crashing fatigue. Bladder control problems for about 8yrs., chronic constipation for 5yrs,
intermittent nausea and vomiting, w/ the period and then anytime last 5 yrs. Constant brain fog/
disorientation as well as neurological symptoms. Sudden allergies to things never reacted
to before and then gone. Have been taking Lupron Depot for 3mo. and it stopped the periods.
It also helped my back a great deal.

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

**Yes. I am utterly perplexed as to why it takes so long to diagnose. I have had a list of
non-related and unnecessary testing, including duplications by different doctors.
But they didn't come close to finding anything of significance ( their words).
So many things they kept missing or minimizing.

Can't seem to find enough research data or stories about damage to internal organs other
than female organs, most of it is seems to be fertility related. Why?

8.)Do you know about the Endometriosis Association?

**Yes

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

**Not knowing the past 10 yrs. what i had, till now, I searched desperately for relief.
Meditation and breathing, pain clinic, chiropractor, message, herbs, vitamins, over the counter
pain relievers, yoga, walking, aromatherapy, tens unit and pain clinic. There is a small list
of dr. prescribed treatments. Basically, most of them either sent me away for 3 month periods
to return to their complete apathy or waited till I gave up trying to get help. Have basically
not had any doctors try to help me w/ the pain relief, even when I stressed that I couldn't
go to work when in this condition. The pain clinic, 2yrs ago was the most tolerant and caring.
Lupron depot has had amazingly good effects on my body.

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. But I don't understand why the doctors would give this remedy to women w/ endo.

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

**Please, please never stop trying to catch up with that life you dreamt of. After 10 years of
of my journey, I wish I had some wise wonderful simple words for any woman who doesn't know
why she doesn't feel healthy anymore. Why its sometime awful beyond words. I remember
thinking that whatever this is, "I'm still here, I'm still alive. I'm not dying, even though
it felt like I was. Am I having a nervous breakdown and don't know how really bad it is?

The most wonderful thing about 'being' a women, is how we connect things in life, how we
see those things unfold and how we embrace the things we love, even more.

12.)Any information I can help you with?

**I would like know more about organ damage from endometriosis

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

**No not really, I first got it in February and was diagnosed in October.

2. Do you have any family members with Endometriosis?

**Not Known.

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

**Yes for 3year +

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

**Pads

5. What symptoms do you have associated with Endometriosis?

**Extreme pain, Nausea and blacking out.

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

**No things were explained well

7. Do you know about the Endometriosis Association?

**I didn't until now..

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

**I had a laparoscopy and before that I was on a
Hormone injection which was not very nice.

9. Any information I can help you with??

**Have you heard of anyone who has experienced leg problems after the laparoscopy op?

I have had major problems ever since coming round from the op over year and half ago.

1.)Problems obtaining diagnosis?

**You could say so, I had HORRIBLE, Painful, periods from the very beginning, at age 8.

I was told that it would get better after having children,
no such luck, my periods and cramps were worse!

I was literally given a pat on the back and was told
“some women just have a harder time dealing with cramps than other women…”

I am 30 now, had two children, and am having a total hysterectomy next week….

2.)Family members with Endo?

**I am assuming my mother did, and her mother. No one had a clue.

3.)Birth Control usage?

**Birth control pills for too long! From age 13-25.

4.)Tampons or Pads?

**Pads, I could never use tampons.

5.)Endo related symptoms?

**Severe pain and bleeding, no pain relief with anything legal.

Cramping before my cramps, during normal cramp time
and during my period and then after my period.

Painful sex, bloating, diagnosed with “irritable bowel syndrome”, depression….

6.)Confused about Endo?

**Yes

7.)Knowledge of Endometriosis Association?

**Yes

8.)Treatments for Endo?

**Other than birth control pills, laparoscopic surgery, which has brought me no relief…

Soon to have a hysterectomy

9.)Information needed?

Yes.

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

**Yes. Thought it was something wrong with stomach.

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?

**Age 16

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

**both

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

**Horrible lower back pain. Heavy bleeding, with lots of clots. Pain during sex

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

**no

8.)Do you know about the Endometriosis Association?

**no

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

**Continuous BC, Laperoscopy, Two shots of Lupron (I think), 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 answer)

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

**Hysterectomy was the only way to make mine go away (hopefully for good)

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

**Yes

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

**No

3.)Are you a DES daughter?

**I don’t think so

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

**No

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

**Pads

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

**Terrible pain before and during my periods and
sometimes a couple of days after my period

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

**Not that I’m aware of

8.)Do you know about the Endometriosis Association?

**Yes I do

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

**Haven’t tried anything as I was told its normal for periods to be that painful

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 didn’t

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

**No I Don’t

12.)Any information I can help you with?

**More info on endo

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

**YES!!! I have suffered from terribly painful periods for 14 years (since I was 17).
It was so bad that my wedding night was anything but special.
Fortunately, I married a wonderfully understanding man.

I went to numerous doctors trying to find out why I had so much pain, but didn't even
hear of endometriosis until I was in my mid-twenties.

After our second child was born, my periods became so painful that I was unable to function
at least one day a month. I also began to have pain throughout the month, though the worst was
immediately before, during and after my period, and mid-cycle.

After the birth of our third child (yes, I have been blessed), it got much worse very
quickly. It was to the point that I was unable to walk without pain several days each month.
I had pain from several days before my period until several days after - totaling about
10 days. Then I also had pain, though not as bad, for several days mid-cycle. I continued to
have pain throughout the month, but by this time I stopped noticing it as much; since the
other pain was so much worse, the less painful days seemed like a break.

I went to see another doctor whose manner was less than polite. She ordered a CT scan, and
when nothing showed up, she told me there was nothing more she could do. I saw her twice,
and the second time she was quite clear that she hadn't wanted to see me that time
(even my mother thought she was rude). After just two visits, she had decided she couldn't
help me! I ended up in the E.R. one night in so much pain I could barely stand. Thinking it
was my appendix, the doctor ordered an x-ray. He saw a mass in my abdomen, too close to the
surface for my appendix. But it was apparent that this was the source of my pain.

After seeing my family doctor and telling him about the mass, I went to an oncologist.
He had the mass taken out - it was endometriosis. The next month, I had my first nearly
pain-free period in years. I was thrilled! But the following month (last month), the pain
was back. I had the mass removed just three months ago, and the pain is already nearly as
bad as before. I had no idea it would come back so quickly! I had avoided finding another
gynecologist, because the only ones in my town are awful (I saw them when I was a teen)
and in the next town there are only two, in a practice together, and one was the
woman who was rude. My only other option was to travel over an hour, and I don't drive much.

Finally, I decided to see the other doctor in practice with the woman - Dr. Goldfarb.
He's wonderful. He's pleasant and understanding and we are trying to decide what to do next.
He says that the chances of this being a continual problem are 87% due to a c-section in
the 25th week of my last pregnancy, though I have
really no idea why that has anything to do with it.

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?

**For 9 months after my first son - Depo-Provera

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

**Both in my teenage years; pads after first child; cloth pads the last 5 years (cloth
is MUCH safer (I know of many women who say their menstrual cramps were greatly reduced
after switching to cloth), much more comfortable, and much better for the environment)

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

**Abdominal pain; leg pain; back pain; painful bowel
movements; pain with intercourse; painful cramps

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

**Not confused, just not yet fully informed - at this point,
is there any option other than a hysterectomy?

8.)Do you know about the Endometriosis Association?

**Didn't before this; will check it out

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

**Laparoscopic surgery, pain medication, another surgery
to remove an egg-sized mass of 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?

**Yes, my doctor explained this (at my FIRST visit - like I said, he's good!)

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

**If you haven't found a doctor who gives you satisfaction, keep looking. Explore your
options, and make the decisions YOU need to make - don't let anyone else tell you
what to do (though discussing issues with those you love and with others who have the
same problem is a very good idea, not to mention your doctor) - I have people who,
for various reasons, are telling me not to have a hysterectomy (including one person
who doesn't want to watch my kids during my recovery!
- not my hubby), but this decision needs to be my own

12.)Any information I can help you with?

**Considering my current situation - probability of continual recurrence, debilitating
pain, having a complete family (hubby's had a vasectomy) - how much worse can
a hysterectomy possibly be? I know, that's a naive question. I realize things can be
very bad after a hysterectomy, especially since I'm so young. But, really, my only other
option is to deal with this pain for at least 3360 more days until I go through
menopause in twenty years. Considering that, if things progress as before (and it
would seem that they are, and quickly), at least 480 of those days will find me unable
to get out of bed because of the severity of the pain, and at least 3360 days will
find me unable to be intimate with my husband, can the after-effects of a hysterectomy
be worse? And how long will I suffer from those effects?

Heather Bennett

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

**Initially I did. My doctor told me that I probably wasn’t getting enough fiber in my
diet and my pain was a symptom of that, even though I told him it the pain occurred around
the lead up/throughout my period. All the Metamucil in the world didn’t stop the pain.
I kept a diary of symptoms for 4 months and went back but he said that maybe it was
irritable bowel syndrome and told me to keep my diary for a further 3 months then come
back. Couldn’t hold out that long went back 2 months later after taking Panadeine Forte
like candy and having excruciating pain for 2 out every 4 weeks in my cycle.

I was finally sent to a Gynecologist (at my strong request). I underwent a laparoscopy
with my GP observing the operation. He said he wanted to be there so he could see/hear the
diagnosis which he was positive wasn’t reproductively related. I allowed him to observe
the operation, and despite hating that I was diagnosed with Endo, it was nice to see
him apologize for not believing me earlier. I suffered in pain
for nearly 10 months! Needless to say I no longer go to that GP!

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

**No, not that I am aware of.

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

**Yes. Was on Triphasil for about 4 years prior to my initial diagnosis mid 1998.
Currently on Depo-Provera injections every 8-9 weeks to
alleviate symptoms (been on Depo for 8 years)

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

**Both but due to my active lifestyle (squash, volleyball,
netball comps) tended to wear tampons more often.

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

**About 2 weeks prior to menstruation I would experience constant intense sharp pain in
my lower pelvic region and vaginal area. Would gradually increase until menses then would
go away by about day 4 of my period which lasted about 6 days. Did experience an increase
in flatulence, occasional pain on defecation, lower back pain, fatigue, loss of appetite,
and occasional nausea too. My menstrual flow was never very
heavy prior to diagnosis and remained about the same after diagnosis.

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

**Nothing that I am confused about really as I have tried to keep myself well
informed about treatments, outcomes etc. My only concern is whether my fertility has been affected.

7.) Do you know about the Endometriosis Association?

**Yes

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

**I have had 2 Laparoscopy & Diathermy procedures and have been on Depo-Provera for
the past 8 years now. It has been the only thing that has been able to minimize my
symptoms. Unfortunately though I have my injections more frequently, every 8-9 weeks
depending on how I am feeling (pain present etc). I know that it is a 3 monthly injection
but found that the last 3-4 weeks prior to my injection I started to experience pain,
discomfort and spotting. Having I more frequently seems
to work for me, no pain, no bleeding. A god send!

9.) 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 am aware of this.

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

All I can say is: You know your body and what is “normal” for you. Don’t let anyone
(doctor, family or other) tell you differently. If you don’t think something is
right chase that second opinion and stick up for yourself.

Also, don’t let doctors tell you that just because you are young (early 20’s) that you
shouldn’t worry about your fertility until you are planning on having a family.
If you are worried about it, get a referral and get yourself checked out. Don’t wait
for a few years and then find out there is a problem and you don’t
have much time left to have a family or even afford the ART!

11.) Any information I can help you with?

**No

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

**YES! After years of painful periods, an eventual ruptured ovarian cyst, a trip to
the ER, countless ultrasounds and all kinds of pain medicine, my OB/GYN told me that
I "might" have endometriosis, but that it's not a big deal and to talk to her in November
if I'm still in pain. That was in May. It's now nearly August and the pain is every day.
So I went to two more OB/GYNs for their opinion, AND to a GI doctor to rule out any
intestinal problems. With everyone telling me that the only way to know if it's endo
I have to do surgery I was about ready to give up. The last doctor did a simple
physical exam, and though it's not 100%, he could guarantee me that just from what
he did, I had endo. I have it in three spots that are somewhat significant.
My lower abdomen, my left ovary and fallopian tube and on the left side of my uterus.
We both agreed that this needed treatment before it got worse.

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

**My mom has fibroids, so it's likely.

3.)Are you a DES daughter?

**I'm not sure what this means...

Known Health Effects for DES Daughters

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

**I began birth control when I was 16 to help relieve my period pain. It helped for a while,
but eventually they got bad again and I started on Seasonal so that I would have
only 4 periods a year. I would bleed through the entire three months, so I switched brands,
and dosages and continued "stacking" the pills. I'm still on the pill, OvCon,
and having periods every 10 weeks... I'm now 23.

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

**Yes, both

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

**Ovarian cysts, and constant unbearable pain... not to mention pain during/after sex.

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

**Fortunately after my original doctor shrugged off the seriousness of Endo, I took it
upon myself to do research. And having talked to many doctors I think I've gotten the facts down.

8.)Do you know about the Endometriosis Association?

**In doing my research I stumbled across the page.

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

**Aside from trying to limit how often I have periods, and plenty of darvocet and
Motrin, I haven't really done anything. All of the doctors seem to be afraid of
doing the lapro, because of my steady determination to one day have a family
(they're worried about creating more scar tissue, and they know the results won't last).
I finally found a doctor who I like and he and I agreed to give the Depo Lupron a try.
According to him, it's a safer and more effective method than
the surgery. Right now I'm willing to try anything.

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?

**Well, that would only make sense seeing as it's the estrogen that causes the endo
in the first place. I just hope to slow down the growth long enough so that I am able to have children

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

**I just have to say that when it comes to your body, don't listen to the first doctor
that tells you something... especially if you don't like what he/she said. If you think
you have endometriosis don't stop until you know and you help yourself, especially if
you want a family. The pain is not only difficult to deal with but so are the mental
side effects too. This disease can and will make you depressed. It will effect your
mood, your lovemaking and your relationships with others.

12.)Any information I can help you with?

**I think I'm good... thank you for all of this!

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

**I was diagnosed after surgery for a gall bladder, which ended up as
a cyst on my ovary the size of a grapefruit.

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

**Not that I know of

3.)Are you a DES daughter?

**No

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

**Yes. For 13 years now (I was 19 when I was first put on it for treatment)

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

**Never tampons - too painful, always just pads.

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

**IBS, pelvic pain, migraines, painful intercourse, bladder problems

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

**I'm a pro now! :)

8.)Do you know about the Endometriosis Association?

**Yes I do and love the site.

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

**I've been on Lupron Depot shots for 8 years, and in those 8 years have had 5 laps
and 1 peritoneal stripping and now I'm facing a hysterectomy (scheduling it tomorrow)
due to severe scar tissue and endo. (I'm childless and 32)

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?

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

**It's not in your head, you're not alone and lean on everyone who loves you.
Keep the faith and know you will be ok. I know we're all some of the toughest people
in this world, but it's also ok to be weak now and then.

10/26/06

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

**Yes. I realized there was a problem when I was having problems getting out of bed( age 18).
I had excruciating pain in my pelvic area and the only way I could sit up was to use my arms only.
After seeing 5 doctors in 3 years, I finally found one to do a lap and to verify I was not crazy.
I had no idea the heavy flow and cramping was not normal…Mine has always been this way.

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

**My family had never heard the word until I was diagnosed.

3.)Are you a DES daughter?

**No

4.)Were you every on Birth Control in your lifetime?
**Yes, I tried to take birth control pills several times over the years but they did nothing for
the pain and my periods would become 3 weeks long and one week of no bleeding…tried the Depo Provera
shots…when I decided to give this option up also…I bleed for 364 days after the last shot.
5.)Did you use tampons or pads during your period?

**I used tampons because my periods were so heavy I would have clots…When I felt the heaviness
of a clot it gave me just enough time to get to the bathroom.
I have spent a lot of my life in the Bathroom.

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

**Heavy bleeding w/clots, constant cramps w/pain shooting down the thighs, pain with
intercourse, pain with bowel movements, trouble conceiving,
periods that would gradually become closer together, fatigue

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

**No

8.)Do you know about the Endometriosis Association?

**Wish I would have found this sooner

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

**I tried birth control pills, Depo Provera, Depo Lupron, 2 laps to remove endometrial
lesions and cysts, I took Darvocet for about a year (because OTC no longer took the edge off)
after a year…I found myself lying in the middle of the warehouse at work doubled over…Darvocet
no longer controlling the pain …finally deciding on Hysto after 14 years of pain and suffering

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?

**Keep your self informed. Know what the symptoms and treatment options are and keep a journal
(or notes) of how it affects you and your life. This will
help you doctor understand your situation better.

12.)Any information I can help you with?

**One week after Hysto surgery…other than hot flashes I feel great right now but am concerned
about other problems that will arise from the hysto …not wanting
estrogen replacement to trigger the endo…what are some other alternative?

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

**No. Started having severe pain on my left side at 19 yrs old (I am now 39). Went to my
primary care doctor. She ordered a CT scan. CT scan showed an ovarian cyst. She referred
me to a gyn. He monitor the cyst for about a month and as it was increasing in size, I was
scheduled for a laparoscopy to drain it. After the laparoscopy he informed me that in
addition to the cyst, he had found endometriosis and that he had used a laser on it.

I started my period just before my 12th birthday. Until my treatment for endometriosis, I would
have cramps with my period that at times were severe enough to keep me home from school.
I never sought treatment for the cramps as they thought
they were a normal part of being a teenage female.

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

**Yes. My aunt (father's sister). I am concerned that my 11 yr old daughter may have
endometriosis. She started her period 11 months ago at 10 1/2 yrs old and started having
cramps severe enough to need Pamprin about 4 months ago.

3.)Are you a DES daughter?

**No

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

**Yes. Birth Control Pills off and on from 20 yrs old. Don't know total number of years
I was on them. 2 yrs on Depo-Provera starting at 28 yrs old.

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

**Both

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

**Pelvic, back and abdominal pain, weight loss, intermittent diarrhea, and nausea.
To top these off, I entered peri-menopause about a year ago causing me to have night sweats
and chills, hot flashes, low heat tolerance and anovulitory cycles.

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

**No

8.)Do you know about the Endometriosis Association?

**Yes

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

**There is no cure for endometriosis. I have had multiple laparoscopies and have taken
birth control pills to alleviate it. I have found the best combination for me is laparoscopy
followed by 1 yr on birth control pills, which puts me into remission for at least 2 yrs after
stopping the birth control pills. Latest round put me into remission
for 4 yrs (just flared up again 3 wks ago).

Although I didn't become pregnant (I thank God my fertility was not affected by the
endometriosis as it took me <1 wk to get pregnant) to alleviate endometriosis, I got just
short of 7 yrs of remission (9 months pregnancy, 4
yrs 1 month nursing and 2 yrs of remission after weaning.)

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?

**None

12.)Any information I can help you with?

**I need more information on diagnosis and treatment options
for pre-teens/teens with endometriosis.

**My notes:
While the post above is true, there are no "cures" for endometriosis, I have heard from women
who have said they have "cured" their endo with dietary, supplement and lifestyle changes,
so I can't totally discount that and is the reason I ask that question.

Then Endometriosis Association has resources for Teens with endo-

Teens with Endo

Teenagers with Endo

A guide for Teenagers with Endometriosis

I have suffered from endometriosis for 16 years now. I am 29 years old & was first
diagnosed at the age of 13, 4 (four) months after I started getting my periods.

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

**At first I did have trouble getting diagnosed, but after 3 months of horrible pain
& many visits to my Doctor, he sent me for an ultrasound which resulted in my first laparoscopy.

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

**We are pretty sure my mum had it, but was never diagnosed.

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

**I was put on birth control at age 14 & used it between 4-5 years.

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

**I tried tampons but my bleeding was to heavy & for to long so I had to use pads.

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

**My symptoms are continuing still & they are, heavy bleeding from anywhere between 15-25
days, very painful cramping, thigh pain, back pain, PID, just to name a few.

8.)Do you know about the Endometriosis Association?

**I do know about the Endometriosis Association.

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

**I have tried a number of treatments, Danozol, implanon implant, birth control, IUD, plus
a few more that don't rate a mention as none have worked for
me at all, including the one's I have listed.

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

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

**I have had 17 laproscopies, my left ovary removed & I am only 29. I have been on this
medical merry-go-round for 16 years, my advice is to find the best Gyno possible & stick
with him/her. It is advice I should of put into practice myself years ago. Sometimes,
I feel like I know more about endo than any Doctor I have seen.

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

**I’ve always had crippling pain during periods (I started on 13th birthday) but thought
simply that I was just unlucky and it was quite normal.

I met my partner in August 2006 and started having regular sex for the first time.
I pretty quickly started experiencing symptoms of urinary tract infections and went to
my local GP who gave me antibiotics to treat the symptoms. I was busy working in different
places and didn’t really have much time to collect the results for my urine tests. The symptoms
settled until I started having regular sex again, they then came back with a vengeance though
were again treated with another set of antibiotics by a different doctor. This went on throughout
August, September, October and November.

Over the months the symptoms varied slightly but all seemed related in the sense of urinary
tract, bladder, kidney etc. Towards the end of November I started experiencing severe lower
abdominal pain. Sharp stabbing pains on both sides of my tummy, around my bladder and pain
in my back and kidneys. Unbearable. I wasn’t even on my period. I then got referred to a GUM
clinic because my doctor thought I might have some sort of infection cause by a sexually
transmitted disease. I felt dirty. I went in for swabs and tests a few days before Christmas
and was told I had PID (pelvic inflammatory disease) commonly caused by Chlamydia and took
two types of antibiotics over Christmas and new year, and was told I mustn’t have sex or
drink any alcohol. (What fun I had ) This just gone Wednesday (its now sun) I went back
to the GUM clinic to get my results (three weeks). The specialist said my sexual health was
fine and that they had found no evidence of any sort of infection. She then said it’s likely
I have some sort of gynecological problem like (bladder) Endometriosis or Interstitial Cystitis.
She said I should get a referral from my GP and arrange a scan which I did that very evening.

I started taking the Pill that day and four days later hear I am now on my period and suffering
from pretty much all the symptoms I’ve listed below. Oh and am back on antibiotics (keflex 500mg,
again) and now treating thrush.

2. Do you have any family members with Endometriosis?

**My mum had a hysterectomy due to a ruptured ovarian cyst though has been diagnosed
with Interstitial Cystitis. My Nan also was regularly hospitalized due to heavy bleeding
during menstruation, she also had a hysterectomy.

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

**I have been on the Pill for the past 4 days. Though have considered
it not long after my periods started.

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

**Pads when I was young. Now use a lot of Tampax Super Absorbent tampons unless there is too
much clotted blood (which seems to be how it is lately) then pads are logical.

5. What symptoms do you have associated with Endometriosis? **Severe lower abdominal pain (sharp stabbing pains and long term aching), pain in bladder
(stabbing) and pressure, unable to pee (urinary retention), blood and ‘floating white
bits’ in urine, pain during urination (in urethra) sharp, constantly feeling like I
desperately need to pee, burning sensation in and around groin area, swollen lumpy areas
in lower belly region. Could be Cysts (PDI - painful), sharp pain in back (lower and high on sides)
kidney pain and spasms, pain during intercourse and discomfort from foreplay, severely
unbearable pain whilst on period (Doubled over on the floor), feel constantly run down,
sick and tired, temperature is all funny, runny poo when on period (sorry)

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

*Know one seems to know about endometriosis, especially doctors it seems. I had to look it
up myself after the GUM woman mentioned it. I wouldn’t have remembered the word had my nurse
mum not been with me (thank God she was).

7. Do you know about the Endometriosis Association?

**I didn’t know about much till I started this research.
I’ll sure have a look at their site.

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

**Every pill you can put in your mouth it seems. Ibuprofen 400mg (x2), paracetamol
(too much I’m sure), codeine, Propain (paracetamol and codeine), Buscopan (IBS) and
stronger prescription drugs (tried). Its pointless listing the antibiotics, as they
seem to have been unnecessary, useless and a big waste of my money (and time).

9. Any information I can help you with?

**Do you know of any other young women (I’m 18) that suffer from endometriosis that would
like to talk about it? I feel so alone. Most of the other women on your site are a
lot older then me and have had children already. I’m worried that I may end up, if am
not already, infertile (I can see and feel large lumpy swelling mostly on my lower left belly
next to my hip bone) I hope to have a scan soon so my doctors might take me more seriously.

© 2005 Jeannah McElroy. Copyright

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