Support? Help?? Questions??

To whom it may concern,

Hello, my name is Brandi Valentine. I am 21 years old and have suffered with "endo" since puberty hit at age 14. I wasn't given a proper diagnosis until I was 15 (I think). Before diagnosis I underwent numerous diagnosis'. Including appendicitis and then undergoing an appendectomy. Plus numerous other diagnosis, needless surgeries, and hospitalization. When I finally did find out the true cause of what was going on I underwent an immediate laparoscopy. My doctor found that at 15 I was already at stage 4. Since then I have gone through all types of treatments. From Lupron to massage therapy. But I was lucky enough to have a baby on August 21 1999. My daughter is now eight months old and my pain has suddenly reappeared. The reoccurrence wasn't gradual at all. One night 2 months ago I was awakened with the familiar pain. Since then I have gone from being so much better to being worse.
The other horrible thing that is happening along with this is that I also have Fibromyalgia and MPS, and IBS, and suffer from severe migraines. So I have endured all of these things combined for over 5 years now. I see a pain management doctor now plus a reproductive endocrinologist. Both have seemed to give up on me. I am currently taking MS Contin three times a day, 100 mg of Zoloft every morning, Levelen 28 (BCP) once a day, and 2.5 mg of Valium at night to sleep. But sadly I still feel my pain all the time. I am to a point I don't know what to do any more. I have gone through all the surgeries, BCP treatments, Lupron, pregnancy, and several types of drug therapy. Nothing has made it go away or even seem to keep it at bay for very long. This past six months has been the longest I have gone without a reoccurrence.
Anyway now that I have told you my history I have a lot questions. The first being that as of now my doctors are telling me there is nothing I can do anymore because I have exhausted my options, so do you all know of anything I haven't tried that I should? The second question is about hysterrectomies. I have been considering the option lately, but recently told that many women still suffer ever after having their uterus' and ovaries removed. Why is there still endometriosis pain after removing all the causes? Okay third question: I believe that the "endo" has attacked my bowel. I have done some research and found tests that have shown that that may be the cause of the lingering pain after hysterectomy. If that is true why isn't that taken care of also? I think this next question is my last one. Since before my first laparoscopy I have had severe adhesions and scar tissue. The doctors have told me that could be one of the reasons I am always suffering. How is that treated or actually how should that be treated? I thought of another question. How come my "endo" pain is not only cyclic but all the time?
Today I went to the doctor and told him I could no longer handle this pain and suffering. I do not want my daughter to see me like this and I don't my husband to have go through this again. Plus my body is beginning to give out on me. Since I am dealing with so many things I cannot handle going through the whole endometriosis cycles again. I believe I am ready to get a hysterectomy. In my heart of hearts I believe it is going to help. He readily agreed with me. But then when I spoke to my mom and to another endo sufferer I am questioning my decisions. I believe this is my last option and my last ray of hope. But my mom and friend think I shouldn't do it. I was lucky enough to have a beautiful perfect happy daughter and I am happy with just one child. Plus I it is hard enough for me with all of the different types of pain I have to take care of one. My husband and I had previously decided if we want another baby down the line we want to adopt. I just don't understand why I am getting such negative reactions to the decision I have made, so therefore I am questioning them. I need some objective help to help me sort through this all. I tried the chat room thing on your site but it wouldn't let me type and I saw no other discussions. I hope that you can be of some help.
Sorry to bombard you with questions, but I searched books and the web for answers to questions and have gotten no where. Thank you in advance to reading my email and responding quickly. Also thank you for being here for all the sufferers of this disease.

Sincerely,
Brandi Valentine

First let me welcome you to Hystersisters! There are lots of wonderful and supportive women here to help you. I did not have my surgery for endo but I have some links for you that might help and give you some other options.

http://www.adhesions.org./forums/index.htm

http://www.endometriosisassn.org/

http://www.endometriosis.org/

http://www.scmc.org/endo/html/question9.html

http://www.infoendo.homestead.com/files/endo.htm

I think some people get negative because this is a no-turning back surgery, Brandy. It is a life altering decision and ends our fertility. You are quite young and perhaps folks around you just want to make sure you have exhausted all other options first.

I certainly think you have suffered with this alot. My heart goes out to you. Pain at such a tender age...14...makes one older than one`s years. It sounds like you have exhausted all options if that is what your Dr. is saying, but you might want to research and/or get other opinions before making that final decision.

Where ever your journey leads you, know that we will help and support you in any way we can.

I am so glad you were able to have a little kidlet! It sounds like you have a very supportive spouse and that will go a long way toward helping you through this.

{{{{{{{{hugs}}}}}}}}}}}}

kaatie

Glad you found us. Before I attempt to answer your questions, let me give you my story in a nutshell. I'm 34, I've had endo since age 14, and I had my tah/bso at 32. I've had a total of 10 surgeries, been on bcp's, danocrine, zoladex, synaryl, lupron, depo-provera, provera pills, progesterone only and post hyst am on estrogen, testosterone, and progesterone...along with other stuff.

I have 3 children...so I'm lucky in that department. I, too, had dibilitating pain (no longer able to function) for 20 years. At times my pain was almost constant, at other times could be pinpointed to a particular time of the month (mid cycle and menstruation). You can read the whole thing by clicking under my name.

These are some great questions!

	Quote:
[. I have gone through all the surgeries, BCP treatments, Lupron, pregnancy, and several types of drug therapy. Nothing has made it go away or even seem to keep it at bay for very long. This past six months has been the longest I have gone without a reoccurrence. ........The first being that as of now my doctors are telling me there is nothing I can do anymore because I have exhausted my options, so do you all know of anything I haven't tried that I should?

What type of surgeries did you have? They can laser the endo off (various methods), excise it, they can also to a pre-sacral-neurectomy which consists of severing the nerves 2/3 or complete the way thru. This gave me tremendous relief for a few years. Excision is touted as the best treatmen option by many of the endo "experts". Whether or not it is best I have no way of knowing. But I will list some links here so you can read and decide for yourself:
www.drcook.com <---read the archives

http://www.infoendo.homestead.com/files/endo.htm <--lots of links here

	Quote:
The second question is about hysterrectomies. I have been considering the option lately, but recently told that many women still suffer ever after having their uterus' and ovaries removed. Why is there still endometriosis pain after removing all the causes?

The reason behind this lies within the theories used to justify certain treatment options. This is all very confusing, so I'll try to break it down as much as possible for you. Here's a link that explains it perfectly:
http://www.centerforendo.com/QandA.htm

Please read the whole thread above to gain a good understanding of what's going on in the medical community re: endometriosis and the selection of treatment options.

What causes endometriosis?
The simple answer is, we don't know for sure. However, there are several theories:

Sampson's Theory
The oldest and most widely taught theory is that menstrual blood sometimes flows backwards into the pelvis. That is, instead of draining out of the body through the vagina, the theory holds that the menstrual fluid backs up the fallopian tubes and drips into the pelvis, where it attaches to any surface and establishes a blood supply. If Sampson's theory is correct, endometriosis is not possible until a girl's first period occurs.

Metaplasia Theory
In the embryo, cells with the potential to mature multiple ways develop in the wrong way in the wrong location. These misplaced cells are present at birth.

Congenital Theory
In the embryo, cells that are intended to form the uterus get left out when the uterus closes before they arrive. The leftover cells are generally found along the coelomic ridge, and are present at birth.

Vascular Theory
This theory holds that the lining of the uterus (the endometrium) moves through the body via blood vessels. It reaches various tissues and then implants and survives.

Donna Laux who works for the centerforendo has had endometriosis for years and still has all her organs intact, but had the endometriosis removed. She says she has no pain now. You can email her thru the link above if you want more a personal account of excision.

The theories behind the treatment options (what causes endo??) determines what you're doctor decides to use for your treatment. (what does he/she believe?)

None of this is very scientific....and pretty scary. Are there women who WERE helped by hysterectomy alone? Sure. If it helped NO women, I'd certainly hope they'd cut this procedure out all together. Which leaves us with the question why did this happen?

They think it's because either:

1) They removed the ovaries and thus stopped the cycles of hormones that may trigger endometriosis episodes (progesterone makes it breakdown, estrogen builds it up) and also hit upon the recipe for hormones (hrt) that kept the hormone levels and check and therefor eliminated the endometriosis episodes

2) Removed the uterus and the woman had adenomyosis (which cannot be detected unless it's sent for pathology after hysterectomy) resulting in a great deal of pain relief (adenomyosis is endometriosis invading the walls of the uterus).

Many of the endo "experts" believe that if you EXCISE (keyword) the endometriosis while performing hysterectomy you will get the best long term results. This opinion definately varies. Be careful, many practitioners feel that removing the endo is not necessary at all and only remove you organs. Some feel that lasering it off is good enough. Who's right? I'm not sure...and neither are they. In my mind, it makes sense to remove the disease and not the healthy organs (where possible). Many woman have endo in exotic locations (diaphragm, lung, aorta) and it cannot be removed easily. Which leads me to your next question...

	Quote:
Okay third question: I believe that the "endo" has attacked my bowel. I have done some research and found tests that have shown that that may be the cause of the lingering pain after hysterectomy. If that is true why isn't that taken care of also?

Because it is so very difficult. They don't want to puncture your bowel, nor do they want to severe your ureter (think colostomy and neurectomy). They opt for the less invasive approach and pray it works. There are centers who handle this type of endo and have teams of surgeons who WILL excise it and do bowel and ureter resections where needed. This is not to be taken lightly and you should choose your surgeon VERY carefully. Check them out with the AMA, state certifications and from first person accounts. Ask them how many of these procedures they've done, how often and where they got thier training...then double check that information with the hopsitals and training facilities. You do not want to be someone's experiment.

	Quote:
I think this next question is my last one. Since before my first laparoscopy I have had severe adhesions and scar tissue. The doctors have told me that could be one of the reasons I am always suffering. How is that treated or actually how should that be treated?

Sometimes it can be treated, and sometimes it can't. Adhesions occur in over 95% of patients who undergo abdominal surgeries. Not just women, but men as well. Not everyone suffers from pain. Some people they really hurt, and others it doesn't. What's the difference? How the person is "wired" (are they very sensitive in that area neurologically?) and where it is (is it wrapped around the intestines? On the bladder? displacing other organs?)

I'll list some links here for you, just know that sometimes it's treatable, and sometimes it's not. Check out www.drcook.com <---read the archives under adhesions

http://hystersisters.com/vb2/forumdi...hp?forumid=101

	Quote:
I thought of another question. How come my "endo" pain is not only cyclic but all the time? Today I went to the doctor and told him I could no longer handle this pain and suffering

The short answer is that it might not be endometriosis at all. It could be scar tissue from prior surgeries (nerves can get trapped in scar tissue and it can be excruciating). There are surgoens who will attempt to correct this as well...but not many. Or...it could be adhesions. They, too, can be terribly painful.

I've suffered from endo AND adhesions AND scar tissue. One leads to the other. Surgeries also cause adhesions and scar tissue independantly of endo.

You may know your body well enough to make that determination, but what you really need is a doctor who will work with you to find out what is causing your pain. Until you know that for sure, I wouldn approach surgery with caution.

Dr. Cook is working exclusively with endo patients now. I have not sought treatment with him, but there are others who treat only endo patients. After getting an accurate diagnosis this might be the best way to go for you. They're located all over the nation. If you want names, contact me and I'll send you what I have or the endometriosis association for a referral in your area.

Also, read the endometriosis source book from the endometriosis association. It's literally a life saver.

They're finding now that some endometriosis MAY produce it's own hormones. But that has not been proven conclusively. They're also discovering some interesting things about endometriosis sufferers. They share common diseases. They're getting close to labelling endometriosis as a "systemic" disease, meaning that it's a total body disease and not a disease of the reproductive system. They're finding that fibromyalgia, lupus, certain lymphomas, mps, tmj, ibs, and certain allergies occur much more frequently in endo sufferers than women as a whole. The oxgene study is still underway and if you want to participate in that you can find them on the links provided above.

Am I saying that you shouldn't have a hysterectomy? No. Am I saying you should? No. I'm saying that you have alot of research to do and that you must find someone who will work with you to find out what is causing your pain BEFORE you consent to any surgery. Approach this with caution and make sure it's the answer for YOU. How do you know? Listen to your body....find out what's causing your pain...do your research. This site is a wonderful resource - check out the hormone jungle and the road less traveled (not for the faint of heart)...read, read, read....then make your decision.

I don't think your mom and others are trying to scare you. Have they had a hysterectomy? I have a daughter, and if she encounters endo I will have her on the first flight out to an endo center for treatment. I will advise her to avoid hysterectomy for as long as possible. Why? Because my experience has been horrendous. Of course all of that has to be weighed with the amount of pain she is experiencing. I just couldn't consent to such a procedure without ruling out everything else. It does affect your life...all the way around. There can be sexual and mental consequences that they just don't talk about.

For others, this procedure (hsyterectomy/tah-bso) is a godsend...for others a sentence. I'm saying that YOU must decide where in all of this information your genetic makeup lies. It's not easy, but well worth the trouble. Attitude and information has everything to do with recovery.

Good luck!

Kaatie and Addrite thank you for the info and links you sent me. Thank you for caring enough to respond. Thank you for being out there. I have pretty much decided to go through with the hysterectomy. I just have to go over a whole bunch of stuff with my doctor before totally consenting. I mean I feel I have run out of options plus I feel in my heart of hearts that this is going to help me. Don't ask me why I just do. I have had a child, five laps, 2 runs on Lupron, one on Danazol, done the whole nutrition change, presacral neurectomy, continuous birth conrol, Provera shots once a weeks, everything has been done with no success. So through the support I have found here and the support my mom is now giving me and my husband I have found my answers. I am going through with the hysterectomy. And I am leaving it in God's hands after that!! Please lets keep in touch. As more things with me progress I will let you know. Thanks again for being out there. You will never know how much you all have helped me!

I am so glad you found us and have been comforted. We will be here for you!

Now that you have decided on your course, there are many resources here to help you prepare.

Please keep us posted and once you get your surgery date be sure to add it to our surgery calendar. We will be watching for your progress!

{{{{{{{{{{{hugs}}}}}}}}}}

kaatie

I hope it's the beginning of a wonderful new life for you!!

Brandi,
Here's an email group you can join: http://www.frii.com/~geomanda/endo/witsendo.html

I belonged to it for several years while I thought I had endo. After my hyst, turns out I didn't have endo but tons of fibroids.

Good luck to you!!

Sorry to hear that you have lived with the Endo so long and so bad. I do know what you are going through though. I have been a little bit more luck with my endo though. The pain had started when I was 20 years old and I am now 24. I had never had cramps with my periods and I kept going to doctor's and telling them that I was having pain and they never believed me. I had always been told that I would never have children but I proved them wrong and I have a beautiful 2 year old daughter who is the light of my life. One night after my husband and I came back from the Marine Corps Ball I was in extream pain and so we went to urgent care. When we were seen at urgent care they informed us that all I had was an STD which was impossible because I hadn't been with anyone else other then my husband and he wasn't with anyone else and my husband showed no signs of an STD at all. They put me on anti-biotics and told me to see my regular doctor in the morning. I did as they asked and then it was about a week later after I was feeling better the anti-Biotic's finished and I was back in extream pain again. They then sent me to an OB/GYN to see if he could figure it out. He did and exam and said that I most likely have Endo. After I got dressed I talked with the doctor and he had me go home and ask my mother(which I couldn't since she passed away 4 years ago) if she has her hysterectomy because of Endo. I went home and started prying into all my family members. I first started with my mother's sister. She didn't know if it was Endo or not but she thought that it was. I then called my father's sister which she informed me that both of her daughter's' now have endo and that she herself had sever endo at 28 years old and yet my grandmother had endo and her mother also had endo too that they all had there hysterectomey's because of Endo. I went back to my Gyn and he told me that I should be at cause for Endo if my dad's side fo the family has it. But I do take after my dad's side of the family by resembling them all there allergies and things like that. After he finally decided to do a Lap about 8 months later he found sever endo and gave the the option to live in pain for the rest of my life or have a hysterectomy. DH and I choose since we are not having anymore children to have the Hysterectomy. I then had to fight with the med insurance by going to like 5 psychiatrist so they could inform everyone that I understand what a hysterectomy is.
I will have my hysterectomy on December 17th and I can not wait for this pain to go away. I do know that it can always come back but we will face that if it ever does come.
Shondel

My fertility doc/ endo specialist completely put me on depot lupron for 6 mo. It stopped the endo pain but brought with it a chemical menepause (hot flashes the works). I ended up having a complete hysto due to adhesions from the endo scares, but the lupron was a good test drive to menepause w/o the finality of surgery. At the time of my hysto no visible endo spots and I was a stage 4. He also told me that lupron before surgery greatly decreases the likelyhood of endo to return after.....talk to your doc
designer2