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 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

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
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