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julie12155 08-27-2007 06:31 PM

Help Wanted: Endometriosis
I am 47 years old. I have a husband of 26 years and two adult children. I am a family daycare provider. I am also a part-time student earning my degree in early childhood education.

In May, my gynecologist told me that I might have endometriosis. He prescribed low-dose birth control pills. I took them for two months and experienced more pain during my periods than before I began using the pills.

I went back to the gynecologist in July, with my husband. We asked the doctor if I might benefit from using Lupron. He seemed cynical about the effectiveness of Lupron. He also commented on how expensive Lupron is and he doubted that our insurance plan would cover the cost (it doesn't). The doctor said he wanted to try stopping my periods completely to see if my symptoms improve. He prescribed an injection of Depo Provera. He also scheduled a diagnostic laparoscopy for August 16th.

After my laparoscopy, my gynecologist spoke to my daughter by phone, while I was in the recovery room. He told her that the band that supports my uterus was perforated and that my uterus was tipped backwards. He also said that I had a couple of small fibroid tumors that may cause bleeding. He told her that I had multiple areas of endometriosis within my pelvic cavity. Finally, he told her that he would be on vacation for the next two weeks.

When I scheduled my post-operative appointment, I was told that my doctor likes to wait four to six weeks before seeing his surgical patients. That appointment was scheduled for September 25th.

Back in May, my gynecologist told me that the only "cures" for endometriosis were menopause or removal of the ovaries. He estimated that I wouldn't reach menopause for several more years, because of my healthy lifestyle. I would like to avoid losing my ovaries, if at all possible.

I am feeling frustrated, anxious, and confused. At times, I feel like I'm a victim of my own body. I would really appreciate any advice, opinions, and support that anyone can offer me. Thank you for taking the time to read my posting.

DQGal 08-27-2007 07:09 PM

Re: Help Wanted: Endometriosis
Welcome Julie12155! I am sorry to hear about your pain and frustration. I am glad you had a lap done. As a fellow endo sufferer, I was glad to have that surgery done and endo confirmed so I could progress to the next step in taking care of myself and living with this disease.
I would wait to see what more your Dr. has to tell you before you worry about a hysterectomy! There are no "cures" even with hysterectomy, so the main thing is to keep it under control the best you can. There are several things you could do, ask your Dr. more about how you can achieve that.
Good luck with your post-op recovery and I hope the surgery helped with the pain! Keep us posted.

snoopy63 08-27-2007 07:27 PM

Re: Help Wanted: Endometriosis
I am sorry for what you are going through...I can totally relate to you...
I have been dealing with endometriosis for over 18 years...I have had 4 surgeries directly related to endometriosis..including last week when I had a hysterectomy... I am 43 soon to be 44 years old....

in 1989 I had a laparotomy to diagnose the endo...I had 3 huge cysts removed... 2 of them completely surrounded my ovaries and one was behind my uterus...all about fist sized... I went on Synarel to stop my cycle for about 6 months can only do that one time... all the while wondering if I would ever have kids... by some miracle I did have my daughter in 1992...
in 1996 I had a laparscopy to remove my gall bladder AND to clean out endometriosis... then last year I started to develop fibroids as well as I had a polyp.... I had a D&C and they removed and tested the polyp...luckily cancer has never been a threat... but the 4 fibroids of last year became 6 this year AND growing...PLUS the endo... I am no where near menopause which would be my only hope of natural relief at this point so I decided that was it...I have had enough....I had a hysterectomy with one ovary removed last Wednesday...this has actually been the easiest of all the surgeries I have been through..the least painful... I am pretty mobile...just cant do too much yet...but fully expect to return to work the 4th...
for was the best decision I could make... I was done having children..not sure if I could have had another one anyway...
I certainly understand about feeling held captive by your body....this is what I chose to do and whay my dr felt was the best may or may not be the best decision for you.... but just wanted you to know there are others out there dealing with all of these female problems/issues and we "get" it

Good luck to you and I hope that it all works out for to another doctor and get another opinion if you feel you arent getting the right help from your current one...

I wish you well!

phillyeagle5 08-28-2007 03:01 AM

Re: Help Wanted: Endometriosis
Hello Julie12155...I tried Dep when it first came out...I bleed for 6 months straight...when I went back to the ob/gyn to get new b/c she said if I took another shot I might not have a period at all...I didn't want to take the chance...My sister had the shot a couple of years ago...she bleed continuously and had major migraines for 6 months...personally, I have enough pain as it is...Also, I wouldn't put something in my body that I couldn't remove immediately if the side effects were too severe...logically, I can't believe your dr. would even recommend Dep when there are so many "safer" b/c's out...I would want to have one that I could switch if the s/effects became too strong...take care...I.

jrmcdaniel201 08-28-2007 09:29 AM

Re: Help Wanted: Endometriosis
Hi everyone, Hi Julie I am 26 and have an appointment scheduled with my ob tomorrow I am guessing that he is going to put me in for the laparoscopy to diagnose me with endometriosis. I have always had problems with my period and I tell you what it has been awful, I also bled for 6 months one time after the depo shot and have always had trouble with b/c. I am on no b/c right now because they are just trying to figure out what exactly is wrong with me. My guess is that it is endo after reading about it. My mother has fibroids and her problems stopped after menopause. She was never exactly diagnosed with endometriosis but I am almost sure that is what she has too. I however can't wait that long, I have bleeding after intercourse, and for the last week and a half I have been on 650 mg of darvocet and 800 mg of motrin for pain, I have been in the emergency room 3 times doubled over in pain and they can't see anything wrong because they have yet to do the laparoscopy and see that way. I guess what I am trying to say is I feel your pain. Just reading and seeing that I am not the only person in the world that is having problems has helped me, my husband, God love him, is clueless. I too feel like a victim of my own body and there is nothing I can do about it, except pray. Good luck and I will keep all of you in my prayers.

KIDINSANITY 08-31-2007 09:06 AM

Re: Help Wanted: Endometriosis
Hi...I've been where you are, and ended up having a hysterectomy in the end. However, it wasn't for the endo reason. That was found during the hysterectomy. Has your doctor mentioned an endometrial ablation? It's an outpatient procedure that cauterizes the lining of the uterus, thus stopping or seriously slowing down the periods. If your endo and fibroids are in the uterine cavity and not in the fibers of the uterus muscle itself, you may benefit from this. I had one done a year and a half ago, and no period all that time. It was done to hold off on a hysterectomy that was done a month ago.
If you wait till menopause to see what happens, then don't you risk the chance of both endo and fibroids growing/multiplying? If you take out your ovaries, that may stop new stuff from forming, but I didn't think it'll take care of the stuff that's already there. Have you thought about a 2nd opinion? I would think there is at least another option or two out there for you.
Good Luck!

julie12155 08-31-2007 06:51 PM

Re: Help Wanted: Endometriosis
Thank you for your quick response! I'd have written sooner, but it's been a really busy week for me. Additionally, I got my period this week and my cramps have been making it difficult to sleep.

I'm so sorry for all of the pain and suffering that you are experiencing. Reading your story makes me feel less sorry for myself. It also helps me to realize that I'm not alone in this.

My daughter is 22 and I'm worried that she might develop endometriosis, like my sister and I have. My sister had a hysterectomy (because of fibroids and excessive bleeding) and one ovary removed. She still has a small amount of endometriosis but her pain is minimal. I wonder what the odds are that my daughter will have endometriosis.

Thank you for being there for me. Best wishes and good luck to you.

julie12155 08-31-2007 06:57 PM

Re: Help Wanted: Endometriosis
The depo provera shot gave me a nasty headache too. I don't intend to have another dose. I didn't take the depo provera as a form of birth control. My husband had a vasectomy 18 years ago. My doctor thought that stopping my periods would relieve my endometriosis symptoms. The depo provera stopped my first period; however, I've been having my second period this week and my cramps are awful. Maybe they're worse because my laparoscopy was only two weeks ago???

julie12155 08-31-2007 07:05 PM

Re: Help Wanted: Endometriosis
Synarel sounds a bit like Lupron. Did the Synarel relieve your symptoms or cause you side effects? I think I may end up having a hysterectomy and an ovary removed. Will the procedure significantly reduce the growth of endometriosis even if one ovary is left behind? Thanks for sharing your story with me and offering me some emotional support!

julie12155 08-31-2007 07:09 PM

Re: Help Wanted: Endometriosis
What steps have you taken to live with endometriosis and to control the progression of the disease? I'd really appreciate any suggestions that you can offer. I'd rather not have a hysterectomy and ovary removed if it isn't absolutely necessary. Thanks for your quick response and for your emotional support.

julie12155 08-31-2007 07:17 PM

Re: Help Wanted: Endometriosis
I will ask my gynecologist about endometrial ablation at the post-surgical appointment on 9/25. My husband and I have a long list of questions to ask him. Actually, this was my second opinion -- the first gynecologist told me that there was absolutely nothing wrong with me. There is a third gynecologist available to me; however she has a waiting list of six months. We'll see what answers we receive on 9/25. Maybe it would be worth the wait. Thanks for writing.

snoopy63 08-31-2007 09:11 PM

Re: Help Wanted: Endometriosis
[QUOTE=julie12155;3186640]Synarel sounds a bit like Lupron. Did the Synarel relieve your symptoms or cause you side effects? I think I may end up having a hysterectomy and an ovary removed. Will the procedure significantly reduce the growth of endometriosis even if one ovary is left behind? Thanks for sharing your story with me and offering me some emotional support![/QUOTE]

What Synarel does is put your body in a causes you to stop having your gives your system a chance to rest...just like a pregnancy would....
as far as the hysterectomy goes...that should be the end of the endo... what endo is is when the uterine lining starts growing outside the uterus...
they would more than likely take your uterus and "clean out" any remaining endo in your body...then, if the uterus isnt there...there wouldnt be a way for the endo to come back....

I am wondering why your Dr said there was nothing wrong with you? did they do an ultrasound? this should be able to pick up and endo or fibroids??

unfortunately there is definitely a higher chance of your daughter developing it... my mother had it and had a complete hysterectomy pretty early in life...this was when the drs didnt take this too seriously...she had 3 tell her it was in her head...the 4th one did surgery and she lost everything..and part of her bladder it was so bad and so far advanced... by the time I got it about 18 yrs ago, it was a bit more commonly checked on... my daughter is almost 15 and she started her periods early (11) I fully expect that she may be dealing with this at some point.... sadly....

julie12155 09-01-2007 02:33 PM

Re: Help Wanted: Endometriosis
My first gynecologist did a pelvic exam, an ultrasound, and an endometrial biopsy. He said the ultrasound showed no fibroids (my second gynecologist said I had two small ones). My first gynecologist told me that I couldn't be in that much pain if I was still able to function!!! He pressured me to go on hormone therapy for my premenopausal symptoms. I never went to his office again.

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