Hello Girls
Please let me know if you find further info about this stuff. I highly suggest going to the link called endo natural to see if those woman their do these things or anything further and if this page matches up with their info. I have not had time to do this yet.

Laurel, I posted your story. Please let me know if it is ok. I just kind of through this page together and can easily change it.

Codi, I use ememrgen "c" packets for my vitamins. I use 4 a day. It is great because this way I do not have to swallow an additional pill(I take many, many vitmamins!) I read B6 and all the B vitamins are very important as is a good diet(mostly sugar and caffeine free)and vitamin E is great for menopausal symptoms. Also I would use calcium/magnesium citrate before bed everyday for strong bones.

Ok, I am back to bed now, just a bit tired here. It is still 7:30 am here. I may be on here later this afternoon to answer some posts.

Let me know if you have any additional info anyone ok!
Have a Blessed day
Lori

Thank you for your message! I can't begin to tell you how much The Endo Club has changed how I feel about my sickness. I began a caffiene free, sugar free diet last week. Although I haven't seen a huge difference yet, I do feel physically better (just not pain better, yet). I am picking up my "tapering off" HRT today with my progesterine cream. I am anxious to start on this. A little worried about the emotional part of getting off the hormones. As I have been tapering off my HRT, I have spent two days just crying and not dealing with life very well. I teach first grade and with a classroom of little one and their needs, my needs are pretty much on the back burner. But atleast, I now have hope! Thanks!

Hi *I ran into your web site while searching for info on (how long cold turkey...from HRT & endo..will take) My story is not great... First Endo Surgery was 1994---put on Synrarel..then off/on years of BC Pills and June2003 had Ovarian Tumors/masses on both sides..... Doc that did surgery told me (I guess she THOUGHT) she took both ovaries (BSO-Bilateral Salpingo Ophrectomy) day after surgery June 26, 2003 slapped ESTROGEN PATCH ON ME. She also gave me 100mg of Prometrium as she left my uterus. I started to have side aches like endo pain in past and told her I was worried the Estrogen Patch was aggravating my ENDO and I had horrible PMS, MIGRAINES and anxiety- SHE ARGUED that the HRT Estrogen was not enough to harm me...she did blood test (WITH PATCH on) and said...NO your levels are normal--- Her answer for me was to do a D&C and put me on Antidepressent. I THANK GOD... I got 2nd & 3rd OPINIONS..(The New Docs said no D&C NEEDED (Here I could been scrapped for nothing but $$money for old Doc).... this all took a YEAR and 1/2 of MIGRAINES AND horrific aches and pains...leg pain that almost could been a stroke and I found out that I had a CYST growing the SIZE of GRAPEFRUIT on my left side that hurt and 2nd/3rd DOCTORs did ULTRASOUND and found out that I HAVE a PORTION of my left OVARY and they TOOK Me off that HRT PATCH RIGHT AWAY... The new Doc said... Did that First Doctor test your blood levels WITH THE PATCH?? OR without? I said...with it on. He then said there is no WAY TO KNOW...someone's hormone levels when they have an outside source (such as estrogen patch) and now am getting better...the migraines are fading and the Cyst (I named it Clyde) is shrinking. I am still now 4 months from going COLD TURKEY off the HRT PATCH and PROMETRIUM pill and still having headaches but now can wipe them out with Anacin or tylonel and not have to use MIGRAINE MEDs I been using past year such as RELPAX, AMERGE, IMITREX, etc. ANYONE here if you have a Doctor TEST your HORMONE LEVELS in your blood..... BE SURE YOU ARE NOT ON HORMONE MEDICINE or the test is not VALID. I am now very skeptical of Doctors a bit...and my New Doc said for a GOOD REASON since last Doctor was not experienced enough to know you do not test someone WHILE they on a medicine. New Doc said...HAd he done my surgery (knowing my Endo History) he would have WAITED 8-12 WEEKS before giving me anything and then tested Hormone levels to see where my body was and they would have found I had hormone levels. The FIRST DOC was also RUDE to me and inconsiderate and talked to me like I was stupid. She also called me after an entire YEAR to tell me she was sorry...she heard what I been thru and wished me good health in 2005. *I know she dont' care about my health only about herself and afraid of a law suit. I can not believe a Doctor like her would have more love for MONEY and not care to put someone thru a NEEDLESS operation. This has truly hurt me... I am still recovering...plus now I finally getting my memory back and my Hair... and my joints are not aching now... that HRT gave me overdose of Estrogen cuz I have an ovary. I hope this help someone else.........to know Just cuz a Doctor says "I took both your ovaries" If you have ENDO they may not know it - especially if they are inexperienced Surgeon. BeWARE and CHOOSE SURGEON and DOCTOR WITH CARE.... BE SURE THEY KNOW ENDO or you can be sorry. I am trying to eat the Endo Diet best I can so that I can rid my body of excess estrogen.
Anyone with quitting HRT experience... ?? Let me know.
I hope this helps someone out there. THanks for listening. Nan (GOD ANSWERED MY PRAYER for WISER Doctor) THANKS BE TO GOD - he led me to RUSH MEDICAL IN CHICAGO.

Hi Nan,

Laurel here, you may have read my story that Lori posted in the HRT/Hyst link.

Boy, just had to reply to this one. It just kills me that these doctors say that HRT won't flare up our endo, they've just removed our ovaries and ovaries produce ESTROGEN....it really leaves me scratching my head! Everybody's body chemistry is DIFFERENT! Hormones are such a complicated matter. Why can't doctors get past their "one size fits all" mentality? (Probably a combination of incompetence, laziness, and just not taking the time to be medical detectives). I've been to a slew of doctors even saw the head of OB/Gyn of the Cleveland Clinic and not one of them ever suggested testing my hormone levels. I could really use that info now.

Personally, synthetic hormones of any kind, have proven to be toxic to me. I had my ovaries removed last March and went "cold turkey", for awhile, had trouble with HRT, and now back to "cold turkey". I think now would be a good time to post what surgical menopause has been like for me.

Menopause has not been easy, but it is WAY BETTER, than what I was going through with endo. I plan on starting on natural progesterone cream soon to help with menopause symptoms.

There are a few topics that really get me worked- up...DOCTORS, ENDO AND HRT!! It's sounds like you've learned the hard way, like me, that you really have to take your health into your own hands.

Welcome to the group, Nan!

Nan,

My reply sounded a little confusing after I read it. I had my ovaries removed March of 2004, it sounded like I meant this past March.

I went without hormones for 5 mos. after the surgery, and certainly it was a change being in menopause, but the real problems began when I stared the HRT. I discontinued the estring and still have a little residual estrogen in my system. So I'm basically back to no hormones for now, until I begin natural progesterone cream.

I think it's apalling that your first doctor didn't tell you she left an ovary!

Laurel:)

Lori,

Thank your for putting my story out there! And thank you for posting scripture and great articles. I particularly liked "Hope - A Christian Perspective". It's so good to come to a site that offers, help, hope, and how to look at this disease from a spiritual perspective. It meets needs for those of us who know Christ as our Savior and for those of us who are searching for Him.

Love,
Laurel:)

Hi (laurel, lori and everyone) I am So Glad I came across your Website. Thank you for replies.
Wanted to just say... Laurel had mentioned was ashame that (Doc I had in 2003 that did my surgery... ashame she did not tell me I still had a Left Ovary... but she was so INADEQUATE... SHE did not know herself.. plus she told me in hospital June26 2003===I am SO sorry...but I HAD to take BOTH OVARIES.... The 3rd Doctor who is Specialist said... She must have THOUGHT the TUMOR she took was left ovary and HAD SHE waited and TESTED my BLOOD before Slapping a HRT PATCH on me She'd had found out I already had HIGH Hormone levels. **(Sorry...I guess I am still sorta miffed over her STUPIDITY and IGNORANCE - not to mention I guess......HAD She not ACTED so ARROGANT towards me like I had no brains... I would probably not be so angry still over this). I can not BELIEVE that a WOMAN DOCTOR would also....try to do a NEEDLESS D&C on another woman when...here 3 SECOND OPINIONS said I did not need D&C. AND...I went in for SIDE PAIN....(Feb 2004 was LAST time I saw that QUACK WOMAN DOC). I am disapointed in the MEdical Profession for letting IDIOTS like that continue to practice or PRETEND Medicine. Sorry...guess I really needed to vent here. **I am trying to keep my Faith. I still now after year & 1/2 of that crappy HRT am trying to recover from the migraines, bloating, weight gain(I was never overweight and now at 46 am still a swelly belly) and body aches starting to go away...plus NECK PAINS,**I also became a member of the HYSTER SISTERs and now find out I have a partial LEft ovary and don't even belong in that group. Studying surgical Menapause and to find out what I suffered from was ESTROGEN DOMINANCE caused by HRT and a STUPID DOCTOR. HRT IS BAD, Plus...my endo is kinda subsiding. I was for bit mad at GOD I know it is not his fault...but I am still so confused now after all this... How could God make us Women this way (sorry is question in my head) and have us go thru all this - I know men get prostrate cancer and wierd stuff.........but at least for major portion of their 30-40s & 50s they don't have the women's issues of this hormone junk. If anyone have feed back on that I would apprecicate it. I told GOD I was sorry for thinking that way....but also I still having hard time feeling even Feminine after all this HRT that I NEVER NEEDED and restarted my ENDO and I still getting my memory back and my HAIR... HRT gave me horrific brain fog and hair loss, headaches. sorry so long. I just still mad at Old QUACK Woman Doctor. HOw could a woman do that to another? Oh well. thanks for letting me vent. nan

Hi Nan,
Welcome here and thank you for sharing your story. I am so sorry that you have gone through so much trouble though. I will be praying that you now can find some things to help you.

Lori

Hi Nan,
I forgot to answer this question you asked:How could God make us Women this way (sorry is question in my head) and have us go thru all this...

That is difficult to understand huh. There are some articles on the website for help with these type of questions. The 'suffering' page and "coping articles page" Hoping it helps you!

talk to you later,
Lori

Lori,
Thanks for your words. I guess am just struggling right now.........my Neighbor (Sweetheart who is 78yr old) she spoke to me yesterday...... I told her I don't know what is up with me...... I just do not feel like I used to feel - I almost feel like a Women's Libber I told her...... She told me she thinks that it is normal after all I went thru... Plus I work administratively for men engineers (80% of the place is male dominated) and they can sometimes be condensending. I am praying to get thru this whatever is with me. At times I just don't feel I even belong among the women at work either. :( Just blue.......trying to snap out of it. Not sure it is working. *Trusting God for answers. Thanks *Hugs to you Lori, nan

Hysterectomy & Progesterone
From Rhonda @
http://health.groups.yahoo.com/group/NaturalAlternativesToHRT

She is such a great person to help you girls with this!!!If anyone uses the cream, let us know how it goes ok.

Hysterectomy & Progesterone
From Rhonda @She is such a great person to help you girls with this!!!
http://health.groups.yahoo.com/group/NaturalAlternativesToHRT

"Menopause and Estrogen, Natural Alternatives to Hormone Replacement Therapy," by Ellen Brown and Lynne Walker:

"Estrogen is only necessary if the body is unable to make asufficient supply from the precursor hormone (naturalprogesterone). Natural progesterone has been reported to work without estrogen even on menopausal symptoms following surgical menopause in some cases. However, relief can take longer than in cases of natural menopause. Even if you already are taking estrogen after a hysterectomy, you don't need to stay on it forever. Health writer, Dr. John McDougall, M.D, states that after about age 45, when estrogen production would have fallen off anyway, you can gradually wean yourself from it. Again the problem is that it's hard to get off estrogen once you start.
Supplementing with estrogen raises the "set point "below which you'll experience hot flashes. When you are withdrawing from estrogen, hot flashes can be worse than before you started taking it. It's important to wean yourself from estrogen gradually.

Taking natural progesterone along with it can help you decrease the dose without uncomfortable symptoms. Women who have had a hysterectomy typically aren't given progestins along with the estrogen because they don't have to worry about uterine cancer. However, natural progesterone can still be useful to these women, not only to help them decrease the need for estrogen, but to preserve their bones. Unlike synthetic progestins, it (natural progesterone) may also reduce breast cancer risk."

With hysterectomy, Evidence is mounting that there is a higher incidence of cardiovascular disorders, osteoporosis, and Alzheimer's disease. Hormone replacement therapy is prescribed routinely following surgery, and in the opinion of Dr. Betty Kamen, synthetic estrogens and progestins are potentially dangerous as they are strongly linked to breast cancer and cardiovascular disease.

On the other hand natural progesterone is safe and effective. Dr. John Lee recommends a 4 to 6 month program using natural progesterone. He suggests applying 50 - 60 ml of progesterone per day (1/4 tsp. in the morning and 1/2 tsp. in the evening ) for 26 consecutive days and then a five day rest. As we are all so unique the dosage may be adjusted accordingly.

Hope this helps

Hi everyone,

I read Dr. John Lee's books several years ago, when I was first diagnosed with adenomyosis which is endo inside the uterus. I tried the natural progesterone cream and didn't have much luck with it unfortunately. I am due to have a hyst on the 13th of Feb 2006 and decided to ask my doc for Prometrium as BCP's completely stopped working and I figured what the heck, nothing else has worked. Since using Prometrium I feel as if my life has been given back to me. I have only used it since Jan 1st so it may be too early to tell, but I have not bled since the first week I was on it. In fact the first week seemed just like a placebo and I was a bit disappointed. Now though i have not bled, have not had flooding. As a bonus my fibrocystic breasts are no more, I have my energy back, I'm working out again without flooding and pain. It is truly amazing. I will let you know more, but for now this is a wonder. Since Sept. I have not gone more than one week without bleeding, spotting or flooding and now since Jan 5th nothing at all, nothing. I am seriously considering cancelling my surgery or at least downgrading it to an ablation. This is such a miracle. I'm telling everyone I know as my skin is beautiful again, my hair is getting shiny and I have tons of energy. I'm not lying on the couch every couple of hours with exhaustion. If you haven't tried it, try it. Be prepared the first week seems like it is not working and then WOW!! Do not take too much. My doc first gave me 200mg a night and I was really dizzy, then went down to 100mg a night and that was much better. She said if I started flooding to take two pills, but I never did after that first week. HOORAY!!

Tara

Hello Tara and everyone else also Hooray, Halleluia and Praise God for if not the cure for this, but at least some relief Please let us know how it goes for you in the next few months also Tara as there have not been too many that have tried Prometrium-which is another natural progesterone.

Did your Dr suggest it or did you pust your Dr. to this?

Jill here has tried prometrium too. Hopefully she will see this post...

How exciting!!! You know I once asked my naturopath about the cream and she mentioned that for those who the cream does not work for-the oral progesterone to try instead. Did you also know that there is a natural progesterone suppository? Boy these things should really be offered more often from our Drs.

Prayers that this will help further,
Lori

Hi... has been a while for me on this. So far now almost a month----no headaches or migraines----I found out that the migraine meds and especially the over=the-counter (aspirin, excedrin, ibuprofen, etc.) were all giving me daily REBOUND HEADACHES.... the migraines and all so far...gone bye bye.. I have good news... before Christmas the latest ultrasound.. has found endometrioma cyst shrunk more (down to golf ball size) and I not sure just how big this ovarian remnant on left side is that I have.....but now am getting a few hot flashes at night (to brief you all again == Docs had me go COLD TURKEY off HRT December of 2004 as the ESTROGEN was fueling not only my endo but this endometrioma cyst on left near the remnant). I have missed last two periods...just a wee bit of PMS. BUT am feeling better than before original surgery in 2003. Have not felt this good since 2003. Doc's nurse talk to me today and said...no periods?? She might want to do something about that. (I was bit scared...but then thought no I am not scared...IF they suggest any drug or procedure and I am feeling ok and they can not justify it===I am just saying NO!) So anyway... not sure but so far so good. Other folks complain of pain with ovarian remnant but I must be blessed cuz I am ok. I hope GOD continues blessing me... as I feel like been thru the mill last 3 years. Thanks. NAN

Hello Nan,

Halleluiah. I am so glad that you are feeling better!!

Give thanks to the Lord, call on his name; make known among the nations what he has done.
1 Chronicles 16:8

Keep us updated ok,
Lori

Lori (or anyone else)
* I have apt for followup in April at my newest Gyn. However, does it seem normal (given that I had BSO (bilateral salpingo oophrectomy) in June 2003....and after Doc's realized huge cyst on left with piece of ovary (ORS Ovarian Remnant Syndrom) they had me go cold turkey off HRT in Dec2005--- and cyst has shrunk down to golf ball size...... I have skipped last two periods now.... . (have only slight hot flash/flushes in face at night...but occasionally -- as today (Saturday Morning at 3am...when could slept in today....My mid portion of my back...just ached like crazy... it made me get up...after being up it is better----but lay back down try to catch shuteye and NO it won't let me. ??? ] I just wondering if anything I can do.....to prevent that. I thank GOD for giving me the hinds feet to climb the high places and rocks I have overcome....still am amazed looking back........(I have 6 Prescription MIGRIANE meds they gave me to help me thru cold turkey off HRT). If I can stop eating JUNK food now...guess I will be feel better too..and les of a swelly belly too. **Just that back ache thing...bothers me. Anyone having suggestions...would love to hear it. (tried sleeping with 3pillows proping me up...still can't sleep..back screams out till I am forced to get up---must be payment for never haveing children. Dear Hubby is sleeping as I type this. It is now 5:40am on a Saturday morn...day off I couldv'e slept in. I feel is silly.........as I have had much worse ailments on HRT with migraines and UTIs. Thanks if anyone has any easy advice for this. Praising God in good times as well as for the past as I know in our tough times is where we learn and it enables us to help others.
*My other thing is I told Nurse(who My Sister says Might not know as much as Doctor---I told Nurse about missing 2 periods now&she said...OH we might have to do something about that!--and fact that I have Endo--HRT pritnear ruined me with leg-blood clots, horible migraines and awful UTIs--there is nothing that would convince me to do that to myself again.. Sis said See what Doc says and she thinks...all this is normal as I was Cheated out of Sudden Menopause--by Doctor placing me RIGHT away on HRT after 2003 Surgery).. I tend to agree. *I will be 48 this year---so guess in way I got that goin for me. BLessings and Favor of GOD to you all. Nan[

Nan,
I am sorry you are going through this now. It sounds like you are having a tough time of it.
It sounds like menopause since you were still having periods the remnant of the one ovary was working fine along with the added estrogen in the hrt. But now that you are off the hrt and the ovary remnant is shrinking you are finally going through menopause.
The achiness and the sleeplessness are symptoms. W/O ovaries you should have had no more periods. So the fact that you were still having them is more odd than not having them now.
Did your Dr. discuss doing a lap to remove the ovarian tissue and cyst? I have read that many women have to do this to remove the remaining tissue.
I wish I could give you a big hug right now, I pray you will find an answer and relief.

Bev

*Reply to Bev's note from NAn...
Bev,
only problem with doing another lap is that the Expert Oncologist Gyn & Surgeon at Chicago's Rush told me......... that is not an option---as I have been sliced/diced too much and he doesn't give much hope in finding this remnant----as it would be too difficult---and it would have to be LAPOROTOMY -- I am chalk full of adhesions---Doc said he is against further surgeries---especially when he is 70% sure he can't guarantee finding it in dense adhesions. He said...everytime I've been cut---they've made a mess of me. So...guess will try to just eat right, drink ton water, exercise and BEST thing Pray. Thanks == just that Surgery isn't option for me. j **Hangin on to promise---Rom 8;28 That God will work good out of all this. My motto is...if you can't feel fine....fake it till ya make it. so Forced smile here... **Today not feeling too bad though. Thanks to GOD for that and for Jesus who suffered for us. thanks. nan

Hi Nan
Sorry to hear about your ovarian remnant syndrome. My wife had that after her hysterectomy last April, 2005. She had surgery with Dr. Sinervo at the CEC in Atlanta last October. (You can read a little about it in the forum post on post-hysterectomy question by Missy - something like that). Dr. Sinervo and Dr. Albee apparently have done laps on about 72 women with ovarian remnants. When my wife was diagnosed with ORS, her gyn wanted her to go to an oncologist/gyneocologist. The problem with their specialty - as you are finding out - is they haven't the skill to do the operation through a laparoscope. They also aren't experienced in treating endometriosis (my wife had endometriosis still after the hyst). I don't know what your options are, but you may want to check out the CEC in Atlanta. My wife has improved tremendously since her October surgery. Her only setbacks have been nerve pain in her laparotomy scar from the hyst (the hyst was her 4th laparotomy) and IBS problems brought about because her bowel was completely adhesed to her pelvic wall. I hope this info gives you some options to think about. Praying for you all.
Greg

Greg... Thank you for your info. *I am just sorta flyin along here for now.........on a Wing and A Prayer so to speak... (mainly prayers of others--of which I thank all on this message board) I have to agree..........regular Gyn Doc's just Do not Get IT when it comes to Endo. My 2nd GynDoc was smart enough to refer me downtown Chgo to Rush Medical--and the Oncologist/Surgeon Gyn Doc was great *He did understand Endo too...... My last visit with him was April 2005---he told me since I am 47yr old..that Time will hopefully be on my side & menopause will be my friend in this case---but that I will have to "RIDE out the STORM". I guess that is his way of saying.......you are out of the ice bergs...but batton down the hatches......still not home yet and few more waves to get thru. *I deeply appreciate your information on the Atlanta Doctors. *Is there a link?
**Then again...I will have go back and re=read your note....short term memory struck and maybe I just over looked it. *If not---please post link to it for me. It is nice to have more info than what Doctors & (few Books in past) have given on Endo, etc. I got this in 1994 and all could find was "Coping with Endo" and others......that made it sound hopeless. I think this is one of the blessings of internet. Thanks again. I will pray for your Wife also. God Bless you both, nan

Their web site is www.centerforendo.com.

All the best
Greg