To all Endo sufferers~ PLEASE READ

First of all, I am not a doctor, scientist, chemical researcher or anything of that nature. I can only share my experience and the information I have obtained about this disease.

I have been reading so many posts from women with Endo and I feel obligated to share an important fact with you.

Because I myself have battled Endometriosis for over 6 years, I have tried many of the same treatments as you. From birth control pills ( 16 different pills over 4 years ), Depo Provera injections ( went from having 3 periods a month to 1-2 but did nothing for my pain and other symptoms ), Lupron injections ( total of 12 injections in 1 1/2 yrs. ) also had "Add Back Therapy" ( Norithendrone ) to help with the bone deterioration and menopause symptoms from Lupron. Laporoscopy w/ Hysteroscopy and D & C procedure twice in 2 yrs. The list goes on and on...

When my DR and I had exhausted all other options, we knew the only thing to do was a hysterectomy. I took it upon myself to seek out 2nd and 3rd opinions just to make sure there wasn't something else I could try. Being as young as I am ( 26 ) and having only 1 child and wanting more, I needed to know that I had truly tried everything. I had.

That's when I began to search for information on hysterectomies and endometriosis. I talked to DR's, friends, family, read books, magazine articles, searched the internet, absolutely anything I could get my hands on. Basically I educated myself on endometriosis and hysterectomies and what kind of an impact the surgery would have on the disease and me.

HERE IS THE IMPORTANT PART: Estrogen feeds Endometriosis. Even with a hysterectomy, if the ovaries are left there is a GREAT chance of recurrent endometriosis. Also, even with a complete hysterectomy, the use of HRT with estrogen holds the same risk. There have been successful cases where the patient used HRT with a combination of estrogen and progesterone. Unfortunately, the number of successful cases that used a combination of hormones is infinitely small compared to the number of successful cases that avoided estrogen for at least 6 months after a hysterectomy.

There are many, many chemicals that mimic estrogen also. There are still tests being done and research to determine if these chemicals attribute to the growth of Endo. Some of the suspected culprits are: The lining of canned goods, plastic containers that are heated, tooth fillings ~ these things all have the chemical Bisphenol-A, which mimics estrogen in our bodies. Dairy products are often obtained from pregnant cows and contain high levels of estrogen. And there's plenty more still in question.

Some women absolutely need a hyst. Some of the women that did have their hyst ended up back in surgery later to remove their ovaries. Some women respond well to hormonal treatments. Everyone is different and what works for some doesn't always work for others.
Like I said, I'm not a doctor or a scientist. These are just some of the things I've learned along the way that helped me determine what was right for me. I just felt that it was something every woman should be aware of. Please talk to your DR's, ask questions, do your research.

I appreciate your battle and your voice. I too at 31 have battled endo for 3 yrs now, although we have no children and are not planning any. I was scared of the research that had been done on the chance that the endo could come back if your taking HRT. My Dr is removing everything so that there is little to no chance. The chance of endo coming back from estrogen like substance is chance I as willing to take. When I am in pain from my endo I want to reach up and ripe them out myself.

I second your statement that women have to do the research and get second opinions. It took me 1 yr after my research to finaly decide what to do.

Good luck to all

Hi Jadehog!

As you well know, endo is pretty bad stuff. Evil in my opinion.

This disease has caused me years of pain, frustration and missed time with my loved ones.

Today is day 7 since my hyst and I couldn't be happier. ( well I could if these hot flashes, night sweats and crying binges would go away!)

I'm glad you took the time to do your own research. The more informed people are, the easier it is to make a decision. Good luck to you!

cncwillborn-
I am sorry to hear of your crying spells, night sweats and hot flashes. I am scheduling my LAVH/BSO tomorrow for sometime in the next few weeks. My biggest fear is the depression I might experience. I have had bouts of depression over the years and I am afraid that this decision will send me into serious depression. I am ready to have a normal life again, so nothing will stop me at this point, but I am terrified. Any suggestions on what can help avoid those symptoms you are experiencing?

Hi Sharon

	Quote:
I have had bouts of depression over the years and I am afraid that this decision will send me into serious depression.

I have experienced "bouts of depression over the years", as well. And although I was concerned depression would be a factor, I was more focused on feeling better physically. For me, I realized that my health, pain, etc was the cause of my lowest points. So I had it in my head that my hyst was only going to improve my quality of life. That doesn't mean it was an easy decision, I still felt some what lost and helpless. But knowing my physical issues would soon be better helped me emotionally.

	Quote:
Any suggestions on what can help avoid those symptoms you are experiencing?

As far as the hot flashes, night sweats and crying spells? That's something I'm still working on! Your DR would be able to look at your history and determine whether or not HRT is right for you. Seeing as how you're also having your ovaries removed, it would have to be a decision you and your DR make based on personal and family history and other factors. Some women only experience minor symptoms if any. I truly feel it is a case by case matter. Right now I'm managing the best I can, taking it one day at a time.

The best advise I can give on both issues is talk to your DR. And when you do, be as open as you comfortably can to fill him/her in on your past, present and future concerns. The more questions you ask the more you learn. And knowledge is power. Hopefully this helps at least a little. Feel free to pm or email me anytime. I may not have the answers, but I have pretty good ears.
Here's a to get you started.

I too am an endo survivor or at least I hope so. Since my surgery I have felt so much better. More energy and require a lot less sleep than ever before. Adhesive disease was giving me debilitating pain and I was unable to lead a quality life. I was on Aygestin for 6 months post op which seemed to help with the menopausal symptoms. At six months I went on the Vivelle patch and I feel almost human again. I had a healthy ovary but my Dr insisted it be removed due to the high incidence of reoccurrence of endo with ovaries. I would have bartered for them but now I am happy they are gone. I gave away all my hygiene stuff and found a tampon stashed away the other day. It finally dawned on me...no more Aunt Flo. Yippee! A CT showed some post surgical changes but so far no debilitating pain from reoccuring adhesive disease. My belly was all cemented together inside. Although my recovery took longer to heal from with the extensive surgery, I got my life back. Best wishes to all who suffer from this terrible disease. Endo is truly a beast!

I am 3 weeks post-op (TAH/BSO) and my dr does not want to put me on any type of estrogen for a while due to the endo.
The only menopausal symptom I've had so far are the night sweats. My dr also put me on Aygestin. I've only been taking it one week.......I hope it starts to work soon.