Re: New member- worse after Lap & Lupron-Question for Mollie
From: anonymous@obgyn.net
Sun Feb 11 18:15:27 2007
Twila,
I have read it so many different places~on different websites and
literature on endo. I did a search for "ruptured cyst spread
endometriosis" on Google and got a lot of good sites. Here are a couple
of sites that mention it...
http://www.menastil.com/endometriosis.htm
http://wb11.empowereddoctor.com/story.php?id=57#
This site had good graphics explaining endo and how it happens. First
time I ran across it but thought I would share.
http://www.femalehealthmadesimple.com/FileThirteenFinal.html
Also, I would suggest going to the Endometriosis Association website
http://www.endometriosisassn.org/
I do not know a lot about PCOS. Maybe it goes hand in hand with
endometriosis. I have lots of persistent cysts but I wasn't told I had
PCOS. Because the cysts were so comples looking on the ultrasound the
dr. immediately said endometrioma.
I know I read about ruptured cysts spreading the endo somewhere else. If
I run acoss it again I will post the source. I hope this was somewhat
helpful. Feel free to email me too. I will share what I know. I don't
know as much as some on here b/c I was just diagnosed in July the week
of my surgery after battling with the pain and ruptured cysts for years.
They think I have had endo since I was 14. My mom would have to pick me
up from school. I would be curled up in the fetal position crying on
the front steps of the school waiting for her to come get me. I had no
idea it wasn't normal. I just thought I had bad cramps like my mom and
grandmother.
Sorry. I started rambling there :) Let me know if I can help in any
way! I have gotten great support from women on this and other forums. If
I cannot answer a question I can probably get the answer :)
ttyl!
Mollie :)
At Sun, 11 Feb 2007, twila wrote:
>
>Mollie,
>
>In your post you mentioned that when a Cyst bursts, it causes the Endo
>to spread more. I have Endo and PCOS(Polycystic Ovarian Syndrome) and I
>often have large cysts that burst, but was unaware that this could cause
>more Endo. Could you please elaborate on this for me, or do you know of
>a website or book that goes into any detail about that.
>
>Thanks,
>
>--
>twila
>
>At Sat, 10 Feb 2007, Mollie wrote:
>>
>>I AM TOTALLY EXHAUSTED ALL THE TIME!!!!! I had a laparatomy in July to
>>remove cysts (but they ruptured first) and my cul-de-sac was full of
>>endo fusing my colon and uterus toether! I had Lupron injections in
>>Aug., Sept., and Nov. The side effects sucked but like you said it is
>>better than the pain. I had pain I would describe as level 4 in Dec.
>>and some of Jan. as the Lupron wore off. 2 weeks ago I about passed
>>out. The dr. said I had another cyst rupture. I broke out in a cold
>>sweat, felt nauseous, trembled furiously, felt dizzy and "saw stars." I
>>gushed blood & clots for like 30 minutes. I wanted to die! It lasted a
>>little over an hour and ever since I am in a lot of pain. The bad thing
>>is when a cyst ruptures, it spreads endo to other places. Scary!
>>
>>I think because the Lupron depleted our bodies of estrogen, and endo is
>>an estrogen dominance disease, we felt better but once the estrogen
>>returned the endo symptoms returned.
>>
>>There is a great book by Dr. Lee~What Your Doctor May Not Tell You
>>About PreMenopause. It is fascinating! It talks about estrogen
>>dominance a lot and references endo and fibroids. It tells you about
>>progesterone cream also. I am a consultant for a company that has plant
>>based natural progesterone cream. It has made me feel a lot better
>>though it will take at least 6 months according to Dr. Lee's book to
>>really see results if you have endo. The dosage for women with endo is
>>more than another woman using the cream. Use it from day 8-26 morning
>>and night. He also says to divide the dosage where you apply more at
>>night than in the morning. I am trying to balance my hormones myself.
>>If you want to know more please feel free to email me at
>>suthner@midsouth.rr.com.
>>
>>The dr. wants me to start Clomid but I had a friend I met online in an
>>endo forum tell me that it filled her abdomen up with cysts b/c of the
>>forcing of ovulation. I am scared to try it. To me, a woman with endo
>>using Clomid would suffer those kinds of consequences more than a
>>"normal" woman taking them. I want to try to balance my hormones on my
>>own first.
>>
>>Good luck. I hope you can get your pain level down. It sucks and
>>doesn't seem fair but these forums are awesome for making new friends
>>that understand what you are going though and can listen with empathy
>>and love.
>>
>>Hugs,
>>Mollie ;)
>>
>>At Fri, 9 Feb 2007, anonymous wrote:
>>>
>>>Greetings all! Thank you so much in advance for any help or just making
>>>me feel not so alone.
>>>
>>>I have probably dealt with Endo for 15 years. I have fought Lyme
>>>Disease & Thyroid Disease for 9 years and it overshadowed the Endo for a
>>>long time. As it got better though, the Endo really came to surface.
>>>
>>>I was in and out of the ER 5 times Sept-Oct. Admitted for 5 days in Oct
>>>and had every test possible run by Cardiologist, Gastro, Surgeon.
>>>Gynocolgist visited me there and promised it wasn't Gynocological and
>>>did nothing. Went home, got even worse. Pain now at a 10, finally
>>>convinced Dr I needed a Laproscopy. Had it Nov 14. I was covered in
>>>Endo lesions. I think I was one step down from the most severe but she
>>>said I was just really, really bad.
>>>
>>>She did not remove any lesions, but did take 2 large cysts off a
>>>Fallopian tube. Started me on Lupron Nov 15. I bled for a solid month
>>>and was in incredible pain. Was told if I was still hurting it would
>>>probably take several months for pain to go away. Lived on Percocet.
>>>
>>>By Christmas, pain was gone, life was great.
>>>
>>>Mid-January pain slowly started back up. Last week pain was back to a
>>>7. Went back to Gyno last week and she said I may need Lupron
>>>injections for an entire year.
>>>
>>>This week the pain is not so intense, maybe a 4, but the fatigue is just
>>>incredible. My hands are swelling, eyelids are swelling. I'm having
>>>leg pain and back pain. I absoluetly, positively cannot sleep. Went to
>>>my family Dr who started me on a sleeping pill. Been on add-back
>>>therapy a month so it isn't the hot flashes.
>>>
>>>I'm just so suspicious that something else may be wrong with me, but
>>>after reading some of the posts here, I am wondering if maybe it is
>>>actually the Endo still making me so sick. Had just expected to have a
>>>grand resolution by now and to be more and more worthless each day is
>>>such a let down. I have had autoimmune diseases for so much of my life-
>>>it's just so frustrating.
>>>
>>>So, I guess I am just curious if others in my situation have gotten so
>>>much better, then gotten so much worse after being on Lupron for several
>>>months. Can Endo at this stage still be causing this extreme fatigue
>>>and general flu-like feeling? If I have to just be patient I will, it's
>>>just frustrating to not know and to be getting sicker by the day. I
>>>have to adsmit the Lupron scares me, but I don't know what else to do. I
>>>can't go back to #10 pain.
>
![[ endo@obgyn.net ]](../../images/endo_at_obgyn.gif)